ASD Moms Rock

Tonsils/Adenoids take 2 by Rachel

2009-08-07T15:07:00.001-07:00

So, they are gone! Surgery was successful on Monday - the doctor followed everything we asked him to do (No NO2, no inhalants, did bloodwork, no lactate ringers in the IV). JG is feeling bad but that was to be expected day 3-5. I hope the weekend brings him some relief. But I am so happy it is over.

More Summer 2009 by Rachel

2009-07-11T08:22:00.000-07:00

Well it's been a busy summer for us so far. We did not go to my parents for July 4th weekend and in turn did not start SCD. We have decided to wait until after JG's surgery on August 3rd since he will not be eating for a few days while he heals.

He has been doing really well in camp this summer which we are so relieved about. We just never know how a new routine is going to go. It is at his same preschool though which made the transition 100% easier. I am going to start driving him to his new school (public Kindergarten) in the next few weeks to get him use to it. Not sure how to handle it exactly since I am not sure he will understand that he is not going back to preschool.

I also need to take him to the hospital for a walk through to prep him for his tonsillectomy.

We also figured out that he has a bad reaction to chlorine in the pools. So, we are not swimming much in pools right now. Our friend has a salt water pool so that is a life saver. He is taking swimming lessons there during the week which is great.

That's all for now!

DAN! Visit By Rachel

2009-06-12T08:36:00.000-07:00

Well we had a good visit with this new doctor. Her name is Dr. Elizabeth Mumper and she is great. She is a pediatrician and use to be the head of peds at VA Medical Center.

www.rimlandcenter.com

Basically after speaking with her and doing a full physical of J. She believes J has a high level of yeast in is GI tract. There have been tests we have done in the past to confirm them. We have tried getting rid of the yeast but when we do J has a bad reaction to it (called yeast die off) and regresses (he gets very frustrated and rigid). We usually stop whatever type of anti-fungal protocol we are doing (we have tried a holistic approach to getting rid of yeast but Grapefruit Seed Extract and also a prescription of Diflucan - both with the same die-off). Dr. Mumper wants us to do what is called an "anti-fungal parade") for 2 weeks we do Grapefruit Sees Extract the next step is to add in Enhansa (which is a more potent herb with curry in it) and then we will do 4 different meds for 2 weeks each. During each of these weeks we will essentially "mop up" all the die off yeast with activated charcoal supplements. With the hopes this helps limit J's negative behaviors.

The big part is that in addition to the anti-fungal parade we need to change J diet. The GFCF diet is ok but mostly it is carbs/startches and rice products. Yeast feeds off of all of this. So, we need to get rid of the yeast and not put more into his system. The diet is call the Specific Carb Diet b/c it's only monosacchrine foods. Basically only, proteins (meats, chicken and turkey - and obviously from reliable farms who only use very good cuts of everything), nuts, veggies and fruits (though there are some better then others). So, no french fries, chicken, pizza, ketschup etc.

I am going to go on this with J b/c I am sure it can only be better for me then what I am eating anyways. It means that we will have to bring what he can eat everywhere we go. No eating out for awhile.

The book that is the SCD Bible is "Breaking the Vicious Cycle" by Elaine Gottschall B.A.,M.Sc that I am waiting to come in the mail to read. Here is a good website though to look at more information on the diet:

www.pecanbread.com
http://www.breakingtheviciouscycle.org

I am planning on implementing it when we get back from our visit to my parents for July 4th weekend. It will gives us a month under our belt before J gets his tonsils out and then starts school.

So we are going to have a crazy few months with the new diet, supplements and the tonsillectomy (not to mention Kindergarten in Sept) will be a little trying for everyone. I know once we get everything in place - it will make a HUGE difference in how J feels.

Dr. Mumper DAN! doctor by Rachel

2009-06-07T09:40:00.000-07:00

We are getting ready to leave tomorrow for Lynchburg, VA to go to The Rimland Center to go see Dr. Liz Mumper. I am really looking forward to seeing her since we have been without a "big wig" DAN! since October (when we left Dr. Levinson). Really we have just been floating along with basically the same supplements as before. I did get a new Cod Liver Oil (Dr. Ron's), butter oil and Coq10 b/c I copied what Kirsten's been using.

We also started Floortime and I really think that it is going to help J increase his social skills and speech.

I will write when we get back.

Memorial Day Weekend 2009 By Rachel

2009-05-24T13:48:00.001-07:00

We have had an awesome weekend. Honestly, J has had the best few days in a row in a long time. He just was so good with the usual things that put him over into tantrum land (i.e. doing anything he doesn't want to do, leaving places he is having fun at, not getting something he wants etc.)

I have started to really tell him the "plan" each time we are going somewhere and what the "rules" are (which is really what I expect of him and what is acceptable and unacceptable behavoir). It seems to work and he can repeat most of it back to me when I ask him to "repeat what I said" so I know it has sunk in.

I can't even articulate the relief I feel right now...

But as usual I wonder why - is it the supplements which we have been back on pretty steadily the last week (fish oil with coq10, 2 methyaids, probiotic - twice a day, enzyme at each meal, acetyl l-carnitine, l-carnitine). Plus, the mb12 shots every 3 days. Or is it the new behavior plan. Also, he is taking claritin for allergies for a week and a 1/2. Who knows?

This week we are going to meet with a floortime therapist on Friday. Floortime is a therapy that starts with the child playing and the therapist builds off of what the child is doing. It's something that J hasn't done yet - it's like the complete opposite for ABA therapy which we have done for 2 years. It's time to switch it up some.

June 9th is our meeting with Dr. Mumper in VA - a new DAN! dr. I am looking forward to that.

Off I go to enjoy the rest of a great weekend!!

JG's 5th Birthday by Rachel

2009-05-13T17:14:00.000-07:00

I can't believe my little guy is turning 5 this weekend! It makes me so happy to see how far he has come and in the same breathe I thought he would be recovered by 5. As always with autism every milestone brings a mixed bag of emotions with it.

But I am really excited about this birthday b/c he is really into it this year. He loves toys! Specifically he loves knights, pirates and princes (really anything that can duel with swords). So it has been fun picking out his toys. I just wrapped them all and I cannot wait to see his face when he opens in them on Saturday. He is not going to know what to do with himself!

He doesn't really understand that the party is this weekend and asks every morning if it's his party today :) My sweet 5 year old boy.

Summer Challenges by Rachel

2009-04-20T03:22:00.000-07:00

I am trying to decide what we should tackle this summer. I would like to teach JG to swallow pills since that would make taking his supplements 100% easier. I also would like to implement the SCD (specific carb diet) to see if that helps his yeast.

I am not even sure how to get him to take pills since he has such a strong gag reflex. It is so hard to explain to him that if he took pills he wouldn't have to drink all his supplements.

The SCD is extremely limiting and he would not be able to have his beloved french fries :) Which is good since they are not good for him.

Decisions, decisions....

Tonsils/Adnoids by Rachel

2009-04-01T03:42:00.000-07:00

J has had 2 double ear infections this winter. Last winter he had 3 cases of strep throat (he and I passed it back and forth all winter). Before that he had an ear infection and sore throat here and there but nothing chronic.

His Ped suggested we go see an ENT (ear, nose and throat) doctor to get their opinion on whether or not he needs ear tubes or his tonsils out. Well the doctor said that J has a level 3 (on a scale of 1-4) size tonsils (and that is without him being sick). A level 4 size is when the tonsils actually touch. Also, J is a mouth breather and snores at night which affects his teeth and allows a lot of germs in (your nose has nose hairs to filter out the germs when you breathe). With all that said the dr has suggested we take out his tonsils and adenoids.

I have always had strep throat and large tonsils too and I wish they would have taken mine out as a child. So, I was 100% behind this idea. I am worried about the anesthesia.

I posted on a message board about it and got a response that was very disturbing about a NT child who was fine before the surgery and after the surgery went crazy. So, now I am freaking out about it.

We are going to talk to his Ped on Sat. and talk with the ENT again. I am also going to call another ENT for a second opinion.

I don't want to ever put J in harms way but what if this really helps him?

J Update by Rachel

2009-02-28T03:08:00.000-08:00

Well we are finally coming off of a 3 week family cold fest. J started off with a double ear infection and a sore throat. Then JL and I got something with congestion, cough and fever. We are finally all on the mend!

J didn't have any supplements for at least a week. It made for a rough few weeks with him just feeling awful from being sick and not having any supplements. Plus, he was on a antibiotics (I did give him probiotics to counteract it but that was it).

We made an appt with a new DAN! Dr. Mumper in Lynchburg, VA. I cancelled the appt with Dr. Compain in NY b/c of weather 3 times. Obviously, it was just not meant to be. I need a DAN! on our team though. I just don't have the knowledge or confidence to do this on my own.

We go on March 10th for a meeting about public Kindergarten next year. We didn't get into the school I really wanted for private K for him (they are filled). There are 2 that I need to follow-up with (TFT and COA) and see if they are a fit. The good news is that his preschool might be having a camp this summer - which would be great so I could work. Also, he wouldn't have to go somewhere he didn't know for camp. This would be their first time holding a camp so they are still working out the kinks.

Kindergarten right now is a priority since I need to have that ironed out. If he goes to K from 9-3 I can take on a new position at work. I am not sure how we feel about sending him to public K vs. private K. Private K is expensive but it will be full day plus he then can start public school in either Kindergarten again or 1st grade. Most importantly, Private K will mean he will get the same therapies through the county for an extra year. Public K means he will not get the services he gets now and there are no backsies with public K (he could repeat it but I would rather him not).

5 years old is right around the corner for J. I can't believe he such a big boy. It makes me sad. First of all, I thought we would have recovered him by now when he got his dx at 3. Secondly, I thought we would have another child - a sibling for J. Plus, the developmental difference between a NT 5 yr old and J is pretty visible now. At 3 and even 4 there is such a wide range of developments that you could squeak by without really noticing. Now, the kids are getting older and it's more obvious to their peers that there is a difference.

I heard this quote the other day:

"For good or bad everything is always changing".

So true.

Turning 5 is stressing me out! by Kirsten

2009-02-06T09:40:00.000-08:00

So, JC will be turning 5 in a few months. I can't believe it! I feel like he is still my baby. My husband told me (in a nice way) this morning that I need to stop babying him, but I can't! I think that is just how I am...I will probably be one of those moms cutting up food for my kids when they are 20:)

With turning 5 comes some schooling decisions. Here is the potential dilemma. We want him to stay in his current school (which is a typical preschool/daycare). They have a full-time private K program. Ideally, he would go to their K program & then we would possibly send him to K again the following year. We really do think that he needs that 'growth' year in there. Of course with the hopes that one more year will get him closer to his peers socially.

The problems are:
1. He is extremely 'smart' - not that this is a problem in itself, but he already knows all of the academics for K (and for 1st & 2nd grade, for that matter).

2. It is still up in the air about whether the IU will be providing private K services next year. Apparently this is a new proposal (to stop the IU from providing) & it is not decided yet. I think that this is a state thing.

3. We can't really afford it.

We took JC for the private speech eval. I haven't gotten the written report yet, but it appears that he does NOT have any speech delay. For some areas he tested older than his age & others he was on target. And this was with him purposely giving wrong answers or saying "I don't know" when he really did know (this is one of his 'things' that he does). However, the SLP did suggest she thought he had major focus and attending issues. ADHD here we come???

She also suggested the growth year for JC & made a great point that academics can always be supplemented, but a social skills deficit is harder to handle. She said that it starts to become more apparent from 3rd-5th grade than it would earlier. Giving him that extra year would at least give him a fighting chance.

Otherwise, the updates aren't huge here....just plugging away. I am looking into some new supps & more tests. Got on the waiting list for the GI doc in Boston. He is my greatest hope in the constipation battle right now!

I agree!

2009-02-06T09:36:00.000-08:00

I have to make a separate post here instead of ditto-ing Rachel in a comment:) Sue DOES Rock!!! Can I be her when I grow up? Sue, you are one of the smartest, strongest, most amazing women I have ever known. I so admire your dedication to your kids & your drive to heal them. I just know you will. I feel that in my bones. My one wish for you is to make sure you take care of YOU also. I know that it total Oprah-style goofy talk, but it's true. You are amazing...now go get a pedicure:):):) Love ya!

Sue Rocks!

2009-02-03T07:43:00.000-08:00

Sue gave a presentation on Nutrition and Leaky Gut last night for a local Autism Support group we all belong too. It was awesome! She is a true example of what a motivated mother/woman can do to change the hand she is dealt with in life. I am so proud to know her and to have her as my friend. I felt like she was a rockstar up there last night and I was a groupie :)

Way to represent the mother-warriors!

Food by Rachel

2009-01-28T03:58:00.000-08:00

J did feeding therapy and has done AWESOME with eating. We are stuck in a rut right now with eating the samethings over and over. Also, I have let J have Ian's ABC french fries at least with one meal a day. He also would like to have a cereal bar and bananas for breakfast. I would say 5 out of 7 days I allow this. I need to get back on track with making new foods and not allowing him to get into a routine with certains foods.

Also, I feel like we should try the SCD (specific carb diet) which is eating only simple carbs. Sue has seen big gains with her son since implementing it and I have heard other parents say the same thing. My probably with this is that there will be no potatoes, cereal bars, tings, gummie bears, pasta, pizza, ketschup, sauce, bananas, cookies/cakes, peanut butter, butter etc. All this stuff is bad for him anyway but what am I going give him for snacks at school? What about his treat for taking his supplements? Basically all he will be able to eat is nuts, certain fruits and veggies, meats, chicken, fish. It is so restrictive.

It is just so overwhelming for me to think about implementing a new diet for him. Then I feel awful b/c am I holding him back from recovering b/c I don't want to try a new diet? The GFCF diet is already limiting a lot of food for him. J just had a meltdown b/c he couldn't have a grilled cheese sandwich the other night which breaks my heart to see. He does have an allergy to gluten and caesin (IGG allergy that we found out through a blood test) so he can't have that which makes me feel less guilty to withold those foods from him - since I know they make him physically sick.

Should I wait until the summer to try the SCD diet so he will be out of school? Will it make any difference at all? I just don't know.

Feeling the Love by Rachel

2009-01-22T13:23:00.000-08:00

Today has been a great day! J was falling asleep for a much needed nap and I was looking at him and got choked up. The immense love I feel for him is so overwhelming sometimes. He means everything to both JL and I. Here are some of the best things about J:
- He is so funny - he really has a quick wit and sometimes just says things that are hysterical. Example (not appropriate but whatever): He calls my breasts "boots" and one day I was laying down on the floor and he said "Mommy where did your boots go"
- He is beautiful - with his dark hair and eyes and the longest eyelashes ever.
- He has the best hands,feet, belly and bum. I could eat them up.
- He is sweet and compassionate. He always asks if we are ok and wants to give us a spiderman bandaid.
- He is strong and athletic. Loves to run, climb, jump and swim.
- He is truly happy. He has this his awesome belly laugh that just makes you smile.
- He surprises me all the time. Just when I think I know how he is going to react to something he surpises me.
- He loves other people and seeks them out.
- His whole face lights up when he is excited. His eyes actually sparkle.

Even if we don't recover J - he still is a happy little guy and he is loved by so many people. Don't think I am still not going to fight autism until my last breath but I have to remember J is happy and that is what matters most.

Basic Vent by Rachel

2009-01-19T04:03:00.001-08:00

The older J gets the more obvious his developmental delay is. I almost don't want to respond when parents ask how old J is. When he was 3 it was ok that his speech wasn't that great but now that he is almost 5 there is a huge gap between him and a NT (neurotypical) child.

In my eyes, speech is J's biggest problem developmentally. He is still not using pronouns correctly, his receptive speech (when you ask him a question) is at a 2 yr 11 month child's level, conversational speech is lacking, his still jargons and he scripts (mostly from movies). If we can get a handle on his speech I think he will fit in more with is peers - he is a social kid by nature so if he has the speech he can interact appropriately. He is getting private speech now in addition to the speech therapy the IU gives him.

Biomedically, I think J's biggest problems are yeast, high levels of tin, stimming (not that this is biomedical but I think there are things we can do for this), some of his quirky things (smelling, itching his skin), focusing, vitamin defiencies and tantrums. I feel like there is some supplement or protocol out there that can fix these things. I do believe that the yeast, tin and food allergies make J feel like crap so he can't learn at the same rate as a NT child does.

Somedays just suck! J has been so fresh lately. It really bothers me. He can't be a fresh/rude child. It's one thing to be autistic and a whole other thing to be fresh. He can't be both. I don't know if it's a phase and all 4.5 yr olds are like this or if he is becoming a...brat (I hate to use this word but if the shoe fits). JL says I should just ignore it but I can't. It makes me angry when he says "Shoo - get away from me" or hits me or says "don't touch me". We give him time outs, tell him it isn't nice and get angry at him. Nothing seems to work. It is so frustrating for me. He doesn't do it much to others but mostly to me, JL and sometimes his grandparents. But it's not acceptable.

Please let it be a phase.

Update by Kirsten

2009-01-16T12:36:00.000-08:00

OK, so I am a blogging slacker!!!!!! I promise I will get better (don't quote me on that:)). I will give a little update on where things stand with JC and our lovely ASD world:)

1. We had a parent/teacher (preschool) conference a couple of days ago. The good news is that it was all good news! Yay!!! I had feared that we would go through school never having a positive conference. Since my husband and I both work in public schools, we know the drill. Well, according to the teacher, JC has made a huge social leap in the past month or 2. When he started the school year, the other kids were basically pieces of furniture in the room to him. He would occasionally acknowledge them (when it suited his purposes), but was content to do his own thing. Now, only 5 months later, he has
1. run to greet kids when they come into the room
2. asked a friend to pretend with him (granted, it was some really bizarre game about making a goat colony, but who's complaining?;))
3. made silly jokes with friends
4. been asked on a playdate!
5. looked around & shown interest in what other kids are doing
6. joined kids who are playing something at a table

These may seem like small things to a parent of an NT (neurotypical) kid, but for us, this is HUGE!!!!

2. We decided to go back to our local DAN doctor for a check-in & to order more testing. We just don't have the $$$ right now to go to the big-wig DAN that we saw in July. He said he thinks that JC is going great. We are going to test some levels & do the dreaded poop test (it's soooooo gross!!!). We have poop issues too, and it really sucks! JC has been potty trained for a while, but he still goes 5-7 days between poops sometimes. I really think poop rules our world sometimes. He is a different kid when he is constipated. It sucks. So, we'll do more testing & then figure out where to go from there.

3. We are starting private OT again. We had done this in the past, but our insurance ran out. Now we switched insurance & we have unlimited sessions! Yay! We are going to the same person as Rachel and Jen (shocker!). She is awesome & hopefully this will help. Our main OT issue is self-help skills. If we can get this kid to put on his own clothes, socks & shoes, life will be great:)

4. Speech - we scheduled a private eval. It is expensive, but she is supposed to be great! We have no idea where he stands & that is what we need to know.

I will update again soon!

Drowning in Poop by Sue

2009-01-13T11:22:00.000-08:00

Now that CJ6 is eating more fibrous and healthy foods, he is having more frequent stools. This would be great if it occurred on the potty, but he seems to be scared of it. We had potty trained CJ6 for urination over a year ago, but we have not been successful with pooping. During the summer, he was very infrequent (6-14 days without a poop). We realized that this was a medical issue that we needed to address first and that we could not address the behaviors until there was some consistency and or predictability.
Fortunately for school, he seems to poop every afternoon. I think he is holding it until he gets home from school, but somethings he comes home with a slightly soiled underwear (we call this a "dirty fart"). As soon as he gets home from school, I have him pee on the toilet. I have also been having him sit on the potty for 10 minutes (using a timer). I have found that right before he poops, he runs around doing a dance to try and hold it in. Whenever I catch him doing the dance, I whisk him to the toilet, but he runs away saying no. If I catch him before soiling and put him on the potty, it seems that his urge conviently disappears. After 20 minutes, I put him in pull ups. In his entire life, I have only ever gotten him to poop in the potty 3 times (and they were all within 5 minutes of having given him an enema). I believe that he is deathly afraid of the potty.......sort of lik e how he was with eating.
Here is an example of last week........
Wednesday:
After sitting him on the potty for 10 minutes, he proceeded to poop in his underwear. I threw out that underwear and he then pooped 4 more times in pull ups. Again, he sat for another 10 minutes and nothing, so when the 6th one arrived, I could not handle it and told Jim I had gone on strike!!!
Thursday
Of course, we had the same problem, but this time we were at CJ6's gym class!!! I was mortified as I needed to take him into the bathroom, throw out his underwear, and then retrieve a turd that had rolled out of his pants! I just wanted to sit in a corner and cry, but I had to gain my composure because I needed to be a parent to TR2.
Friday
When Cj6 came home, he had stool in his underwear. CJ6's behaviorist worked with him for the next 3 hours. We had him sit on the potty the entire time, with a couple of quick breaks to jump on the trampoline.
Saturday
While at a party, he soiled his underwear, and left a trail of feces on the floor.
Sunday
Had a dirty fart. Put him in a pull up and he stayed up late.......
Monday
CJ6 woke up with poop in his overnight pullup (I think he was retaining until he had privacy)
When he arrived home from school, he had another dirty fart and then 2 more large stools.
I feel totally overwhelmed with poop (especially since I have 2 boys with gi issues in diapers).

Feeding, Pooping and Imaginative Play by Sue

2009-01-08T06:26:00.000-08:00

Feeding is going very well. CJ6 is taking larger portions and more variety. I find that if I cut the food into larger chunks, he takes more volume, but I have to be careful not to make the chunks too large. As for variety, he ate homemade pear gelatin last week and honeydew melon this week. There is nothing besides celery that he truly does not like. I am soooo proud of him!! Also, when we went up to Vermont for Christmas week with friends, he immediately ate the food placed in front of him without prompts or protocol. I would turn around and see it being inhaled! Of course, we are back to protocol this week, but I was very impressed and view that as a positive sign.
All I seem to be doing is shopping for organic foods and cooking!!! I cooked carrots, caulifour, chicken, pearsauce, brussel sprouts and yogurt yesterday. I used the blender so much yesterday that I actually burned out the rotating device on my Kitchenaid blender and had to got out and buy a new blender at 10pm last night. Making my own SCD legal almond yogurt is actually very easy.
Now that we have the eating down, we need to work on the pooping thing. Of course, now that CJ6 is eating so many healthy foods with wonderful fiber, we are having multiple poops each day. It would be great if CJ6 were not afraid of the toilet!!!! Yesterday I sat himon the potty for 20 minutes, only to have him get off and poop. I threw out that pair of underwear only to have him poop 4 more times. I was totally pissed by 8pm!!!!
On another note, we are seeing huge cognitive burst and CJ6 has just started imaginative play. This is not something that can be taught by a therapist. It is a developmental milestone and that is amazing that he has finally started doing this. I t could be because his brain and mitochondria are finally getting glucose or it could be because of the chlorella and cilantro combo. We only started to do that 4 weeks ago and began seeing imaginative play 2 weeks ago.....hmmm.

Utter meltdown by Rachel

2009-01-06T05:03:00.001-08:00

I just got back from dropping J off at school. He usually runs into school and is so happy to be there. Today he had a complete meltdown/tantrum b/c he wanted to go into another classroom then the one the kids start out in. He was crying, throwing himself on the floor, hitting me and yelling. After about 15 minutes I calmed him down enough for the teacher to distract him so I could leave.

Obviously, I need to give him the supplements today. I think this is the longest he has gone w/o them unless he has been sick (then I usually don't give them to him or I only give him a few). It's only been 3 days (Saturday he threw them up) without them.

What an awful way to start off the day - for both of us.

Random 2009 Items by Rachel

2009-01-06T02:33:00.000-08:00

We will be taking J to see a new DAN! dr in NY on Jan. 12th. I am looking forward to this b/c we haven't been happy with our other DAN! dr in FL. I hope this new dr will shed some light on somethings for us.

Here are a few things I want to discuss:

1. Amount/consistency of J's urine - I know gross but true. He pees a ton and it's very clear. Sue brought up that red blood cells are what color the urine yellow and J has low hemoglobin so is that a problem? Also, B vitamins will color pee so is he getting enough B vitamins? He gets the MB12 shot and B6 from fish oil.

2. Do we need to switch up his supplements? Right now he takes:
1 capsule Taurine
2 capsules Probiotics
1 capsule Acetyl L-Carnitine
1 capsule L-Carnitine
2 caps. Methylaids
3/4 tsp fish oil
1 1/2 caps. Coq10 (this also has Vit. C in it)
1 Minerall
1/2 tsp Glutithione
1 cap. Vit E gamma-tocopherol
MB12 shots
Authia Cram
Epsom Salt Baths

Actually I have not given him any supp. in 3 days since we had an early appt with this new DAN! dr but had to change it due to pending weather. So, I really should start again today since the appt is now in 2 weeks.

3. Address his stimming. He really has been doing it more lately without the supp.

4. Speech is a huge issue - we are starting private speech lessons next week. I am really hoping this helps J but is there another supp that might help more then just the Methyaid which has the TMG in it.

5. Yeast - we can't seem to get a handle on this b/c as soon as we start a yeast protocol he starts regressing (tantrums, fussy, frustrated). We have tried GSE and diflucan - both affected him the same.

6. GFCF - should we stay on this diet or switch to SCD or another diet? Would it help his yeast issue?

In addition to this appt. I need to settle J's school situation.

We really need to figure out what we are going to do with J this summer and next year. Since I am working now I need to figure out a camp situation for J. I so want him to go to the same place Kirsten sends her kids b/c
1. It's a great place (as I am told by everyone) 2. They have a summer program so I would kill 2 birds with 1 stone. We have been on their waiting list for 2 years now. I call every few weeks to check and see if there is an opening but there never has been. The school said that by March they should know if they have any openings. There are 2 other private schools that I have as a back up plan. I really want to get the school situation settled asap so I don't have to worry about it any longer. It weighs on me.

Beach Day by Rachel

2008-12-29T03:07:00.000-08:00

We are in FL visiting my sister and went to the beach yesterday. A little boy befriended J and they played together so nicely! They shared a snack, played in the ocean and played in a big hole in the sand. It is so nice to see J in that situation.

A Walk in My Shoes

2008-12-18T04:11:00.000-08:00

by: C. Waeltermann, 2007

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.

"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent.."
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions….

But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity

He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!

He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!

Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you…

That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned.

Thankful by Rachel

2008-12-17T15:07:00.000-08:00

I just got back from taking J to Occupational Therapy. I saw two boys who were using walkers, visibly disabled and hard of hearing . As hard as our situation is with J there are always people worse off (I hate to say that those children are worse off b/c I have no idea what their situation is). But at first glance, we don't have to deal with wheelchairs/walkers, oxygen tanks or not being to speak or hear.

I have to remember to savor the little things. I can see J smile when he is happy and cry when he is sad. He can run, jump and sing. He loves to give JL and I hugs and kisses. He pretends I am Princess Mommy and he is Prince Charming and kisses me to wake up! He is our sweet boy.

I heard these mothers talking about going holiday shopping while pushing a wheelchair and their shopping carts at the sametime. Can you imagine? They were laughing about it but I am sure somedays they are not laughing.

Tonight, I feel thankful for my family, our health and happiness.

Update on CJ6 and TR2- by Sue

2008-12-15T11:03:00.000-08:00

CJ6 is doing very well! Between the sucraid, ultrase 18, Pentasa, and gastrocrome his gut is feeling much better! With this medical situation being remedied, he is much more receptive to learning. We have also seen huge expressive language bursts and CJ6 is actually coming up with his own sponanteous novel sentences rather than echolalia. Feeding therapy is also going well. He is eating shrimp, flounder, carrots, pears, broccoli, spinach, blueberries,etc.. All the foods are SCD legal.
Last week, we sprinted up to Boston for a 5 hour visit with a mito doctor at Tufts. The doctor does not feel that CJ6 has a primary mito disorder. Although I am happy to hear this, I still plan to go out to Cleveland because I always like to have a couple of opinions. I don't put much faith in the Boston doctor's opinion because although he is a mito doc, he does not see a lot of autism patients. A lot of doctors view the mitochondrial inefficiency as a secondary mito issue associated with autism. It might be that it is related to malaborption of coenzymes (vitamins) that are essential to the transport of electrons. In Charlie's case, it might be that lead is bound to one of proteins along Complex 1 (of the electron transport chain). It seems that the concept of mito PDD-NOS is very contraversial amoungst the top mito doctors. Basically, we are using this doctor to do some more bloodwork before we go out to Cleveland in June.

I acutally have to switch my attention to the other son, TR2. Within the last serval weeks, his amino acids came back extremely low , despite having been an an elemental formula for the last 19 months. Our doctor said "we see this frequently with children on the spectrum." What? TR2 is not on the spectrum as of yet!!!! He has great eye contact and joint attention. His organic acids also came back suggesting ketosis. These tests suggest malabsorption, but why and what do we do about this? He is already on Pentasa. Perhaps he is not getting it out of the bottle or it is not being activated because his gut is too basic.
TR2 has been requesting chicken all the time, even waking up at 4 am and screaming for it. It is ridiculous that he is requesting it all the time. He is also very cranky and whiny. This could be because he is deficient in many amino acids and knows that chicken is a good source of protein. It can't feel good to be going through ketosis. Then, another thought occurred to me......perhaps he does have eosinophilic esophagitis, a diagnosis that we have not totally ruled out. Then, the probable malabsorption might be related to inflammation from eating complex proteins, such as the chicken and broccoli that we reintroduced back in October. I need to go back up to Boston and see Dr Buie again. Perhaps it is related to a lack of l- glutamine or a vitamin A deficiency. I am going to take Timmy for a bloodwork tomorrow to check his vit a and d levels. After the blood draw, I will start doing Cod Liver Oil on a more religious basis. Thank God that he is not allergic to codfish!!! On another note, TR2 had a totally white poop yesterday and I know that is not good!!!!

I hate worrying about the boys and having to switch from one child to the next. I never seem to get a break from the sense of panick. It just seems to oscillate between the 2 boys.

Autism in the Media - by Sue

2008-12-15T10:59:00.000-08:00

I was watching Good Morning America on Sat morning, and they were doing a section about holiday messages. All words were written on flashcards and then flipped over. There was music playing in the background. Some messages were about soldiers in Irag and some were from children with cancer, etc... The very last portion had a little boy that flipped up his card. It read "Autism is Treatable". Then, he flipped over the card, and it read "I am proof!" I burst into tears, because it was the first time that the news media was acknowledging that there is hope. Maybe we are entering a new age for autism.

Life is BUSY!!! by Kirsten

2008-12-12T19:31:00.000-08:00

First off, I am sorry I have not written in forever! Things have been crazy both on and off of the ASD front. I work 4 days a week in a pretty stressful job & this is my busy time of year. In fact, it is 10:30 on a Friday night & I JUST decided to call it quits for the night. I have been working now since 8am. I was working at home tonight, but it was still exhausting!

Things have been going well with JC this week (knock on wood!). Since you just never know, I will take it when I get it. A big issue for JC is constipation & it really effects his mood and behaviors. This week, the poops have been happening almost daily (AMAZING!!!!), so things are good:) I ordered this nasty stuff called Fruit-Eze online. I do believe that it is used in nursing homes for old people with constipation. Whatever works...I will try it! We have been giving J some *tasty* peanut butter and fruit-eze (basically a prune spread) sandwiches everyday. YUM! He's been in a great mood, so life is good.

Last week was a different story. He wasn't pooping & he had gotten a cold. That is the ASD kiss of death for us. Just like Rachel wrote, colds = regression for us here. It totally SUCKS when that happens. I feel like I lose him & I hate it. Thankfully, he comes back to me when he feels better. But it is really scary and sad to see some of his forgotten ASD symptoms return when he gets sick.

I can't wait to see the 3 of you & your husbands tomorrow night! Jen is having a party & we will all be there:-) WITHOUT the kids...even better:):):)

Colds suck by Rachel

2008-12-06T13:08:00.000-08:00

J has been fighting this cough/cold thing for a month now. I brought him to his Ped. twice and he was given amoxicillan for a sinus infection. We are done with the dose but he still has this hacking smokers cough. It keeps him up at night and in turn keeps JL and I up. I wonder if it is a new cold that he caught on the tailend of his sinus infection or was it not an infection at all? I guess I will have to bring him back to his ped. this week which stinks b/c he will either have to miss school or therapies to do this.

Also, with sicknesses comes regression. I notice with J that has had more tantrums then ever this last month, gets frustrated much more easily and perseverates (repeating) things more then ever. It is so upsetting to watch b/c I am always so afraid that it's not just the cold but a permanent setback. These regressions aren't all the time in fact, today is a good day, but you just never know. I know he is tired and doesn't feel well but it is hard to watch the regressions with the constant fear he is getting worse not better.

Anyway, I hope he feels better before the holiday festivities begin. Since we all know how busy this time of year is for everyone.

Happy Holidays!

Kindergarten...should we stay or should we go...by Rachel

2008-11-25T02:09:00.000-08:00

We are beginning to think about what to do for J for Kindergarten next year. He will be 5 in May so age-wise he could go to public schools. We have a great elementary school that he is districted to go to so that is not a worry for us. Here is our pros/cons list:

1. Once he is in public schools then all his therapies come from the school. J gets great therapies right now from the IU (Intermediate Unit - county). I am not saying that he will not get great therapies from the school but we know it won't be the one-on-one therapies he gets right now.

2. Private Kindergarten will allow him to continue services through the IU for one more year.

3. If he excels in a private Kindergarten then he could go to 1st grade the following year when he is 6 or go into Kindergarten again. You are only allowed to repeat a grade once so if he goes to public school for K then isn't ready to move to 1st grade he will repeat Kindergarten.

5. At 6 he will have to go to public schools.

6. Private K or a Pre-K enrichment programs are wicked expensive.

I visited a Montesorri school that I loved but I am not sure if it is a fit for J. We will take him to visit a few times before we make our decision. We would like him to go to where Kirsten is sending her kids but it is so hard to get into their program. We have been on a waiting list for 2 years there and I call 3x a month to see if they have any openings. There are 2 more schools that we are thinking about in the area also. One we have visited the other we haven't.

We made an appointment with elementary school for December to start the registration process and we have a transition meeting through the IU also. We were told we should go through the process of putting him into elementary school and have the evaluations done to see what type of classroom he should be in.

Jen Sucks

2008-11-21T19:16:00.000-08:00

Okay, so I haven't been blogging. Rachel is sure to let me know about this. I have been going back and forth on the IEP and that's my excuse. It's lousy, but there it is. I hate the IEP process at the preschool level. It seems pointless. I feel as if no matter what the paper says, the class will be the same either way, with the exception of maybe an extra 30 minutes of ST here or there. It is what it is. Here's how I feel about school. It's better than stimulation than I could offer on a full-week basis, but ultimately, it's not going to be the ticket. It does make me feel inadequate though. (Autism will generally reduce you to your lowest level of incompetency.) No really, it's THAT awesome. I feel like I should be all over his school program, reviewing goals, tracking progress, observing, etc. More or less, school is just a place to go where he may learn something, but at least I'll have some time to try and figure what to do next. So, what are we trying next? We'll doing a few staple biomed supps like CLO, MB-12, zinc, probiotics, enzymes, P5P, E. I'm hot on trying GABA since we have such a lack of calmness and focus (unless it involves the alphabet.) I'm currently re-thinking the GF/CF diet b/c I'm not sure if he's a responder. I have no evidence of sensitivity to either and behavioral changes aren't apparent. I hate it throw in the towel on it, but I also don't want to waste time on things that are NOT HELPING. Got a bunch of blood work back and have a few markers suggestive of mito dysfunction, so we'll need to test for the MTHFR gene mutation so I can join Rachel's wicked happy club. We've also began work with a homeopath whom I really like and we've done two sessions so far with a cranial osteopath. Something's got to give. For Christmas, we are asking the grandparents for a child-tracking device b/c he's such a flight risk and he's so goddamned fast. Awesome.

HAPPY BIRTHDAY to Sue. At least I'm not so ridiculously old in comparison anymore. Because OLD and BITTER is such an attractive combo :)

This week by Rachel

2008-11-21T13:00:00.000-08:00

Let's see...we had a good appointment with J on Monday with a new developmental ped who took our insurance. Her name was Dr. Beth Parrish at St. Chris Hospital in Abington. J scored at a 4 1/2 yr old cognitively (yipee) and about a 3 yr old language wise. So, we definetely have to increase his speech therapy - which has been on my mind to do recently anyway. I made an appt with a speech therapist who was recommended to me - he will have an assessment done in December. I asked Dr. Parrish if she thought J would be MR (mentally retarded) and she said she did not think so at this point. They can't test for this until he can get an IQ test. JL and I were happy with her and with the overall appt.

Then I got some bloodwork back and J is positive for the MTHFR gene mutation. This made me wicked sad. I don't completely understand this but I had the test done b/c I have been reading on message boards that if you have this and go under anesthesia then he could regress b/c of the nitrite oxide. JL read that 60% of the population have this mutation. It still makes me sad that JL and I gave this to J. I don't believe that the MTHFR gene mutation has anything to really do with his autism but it means he is inoxidative stress. Dr. Miller (J's ped) said that we are already doing everything to help him with the oxidative stress: Mb12 shots and glutathione. Also, having this mutation increases his risk for vascular disease later in life.

I do think we should do some more genetic testing so see what else is going on.

Feeding Therapy - Day 2 - Sue

2008-11-18T19:12:00.000-08:00

I expected the worst day in my life, since CJ6 began feeding therapy today. On the contrary, CJ6 was awesome and ate 30 bites of blueberries, broccoli, and carrots!!!!!! I am flabergasted and ecstatic!!!
And then, he ate dehydrated apple chips at his social skills class. Say what?????? Are you serious? Is this the same ASD kid that I have been trying to force feed for the past 4 years?

More of CJ6's history and Mito? -Sue

2008-11-18T18:49:00.000-08:00

CJ6's feeding issues stem back to his first birthday. He would refuse food, gagging and throwing up on both of us. At first, I thought CJ6 did not want to get messy or that it was sensory based. At our 2 year well visit, I asked if his selective eating could be metabolic or due to allergies. I was told that he was growing and I should not worry. At age 3, I came back to the pediatrician with a child that had 5 foods he would eat without puking (all carbohydrates), and oh yeah......autism. At that point, I was told about early intervention. Fine, but what about a metabolic issue? Again, I was told "don't worry". Once we saw the dev pediatrician, he suggested a local metabolic geneticist. We started to rule out Fragile X, subtelomere microdeletions, FISH, etc... We did find that CJ6 was deficient in many amino acids (especially the branched chain and carnitine) ; He did the standard workup, but I never felt that we were getting anywhere with him. We still see this doctor because he has been monitoring CJ6's amino acids and prealbumin levels.
Not thinking there was a mitochondrial issue, we began working with a nutritionist. We tried to implement the Specific Carbohydrate Diet, however, CJ6 refused to eat...... for 7 days!!!!!! At this point, I knew that we needed a behavioral feeding therapist on board. 3 months later, we found Dr Dawson, who had been on the Kennedy Krieger intensive feeding team for years. She had just moved to Westchester University. We started the intake procedure and she said that we needed to run allergy panels first. Of course, up popped IgE egg and peanut allergies. Once this came back positive, she wanted us to do a thorough gi workup.
At the same time, I began talking to another mother whose daughter was diagnosed at 2 1/2 with autism. She had her daughter scoped at age 3 by both Dr Soriano at St Christopher's and Dr Krigsman. Both doctors found lymphnoid hyerplasia, significant inflammation and ulcerations in her daughter. Both docs agreed that her daughter should be put on sulphasalazine. Her daughter was scoped a year later, and the inflammation had disappeared. Her daughter is now 9 years old, has lost her diagnosis, is in mainstream classes, takes hip hop dance classes and had a spa birthday party! This woman's story became my dream and so I pursued the gi angle.
Before we moved to PA, the original dev ped had suggested that we see a ped gi doc that had put CJ6 on Elecare for low protein intake. It was only one appt. At this point, Dr Soriano had moved back to Chili and Dr Krigsman was not accepting insurance (which was out of the question). With this limited workup, we made an appt at a local hospital by default. After waiting 6 months to get in, I presented the doc with 25 gi related symptoms and then told him CJ6 had autism. The doctor scratched his head and asked me why I was not at the Autism Resource Center. I waited 6 months for this!!! I knew that I needed to go elsewhere! I needed to go to a doctor that specialized in scoping kids on the spectrum. This doctor would not have known what to look for and we certainly would have missed CJ6's sucrase-isomaltase deficiency. A month later, I spoke to another warrior dad that told me about Dr Buie up at Harvard Medical School. I called and got my name on his waiting list ASAP!
After talking to yet another warrior mother, I took that boys to Dr Jyonouchi, a research immunologist at UMDNJ. She is highly respected and has been recruited by NIH for years, but will not leave her lab facilities. (BTW, her son is a resident at CHOP working under Dr Orange. He often calls his mother to run workups on their patients.) Well, she ran cytokine profiles for both boys. The interesting part of this is that when she exposed CJ6's blood to milk, and soy, he made very high levels of interferon gamma. Wow! I am glad that we had already gone GFCFSF!!!!
I also spoke to another mother that told me that she thought her son had mito, and told me that CJ6 had red flags! I did some research on the UMDF's website and realized that we had already been doing a lot of the mito cocktail, but just added in CoQ10 and Vit E. What I found very interesting was that both CJ6 and TR2 made huge gains when we put them on Acetyl Carnitine!
We finally got to see Dr Buie in April, and we scheduled CJ6'S scope for July 31st. (He is one busy man!!!!) Leading up the scope, we stopped all supplements 2 weeks in advance, and CJ6 began throwing up. It was not until we were in the car to Boston, that I realized he had not pooped in 2 weeks. Nothing can go in if nothing is coming out! We began the 2 day bowel prep with castor oil, magnesium citrate, ducolax, and miralax. At 8pm the night before the scope, I called the gi on staff and he said to do more ducolax, miralax and a saline enema. We got a little bit of feces out, but when Dr Buie went in, CJ6 was impacted through the descending, transverse, ascending colon and the cecum!!! He immediately prescribed Carnitor, which I immediately told him that we had stopped the acetyl Carnitine 2 weeks before when the pseudo-obstruction had begun. When we got the scope back, we found out that CJ6 did not have inflammation which Dr Buie claimed was because we had done lots of "steps to rescue him"(CFSF, elecare, gastrocrome, singulair). However, we did find out that CJ6 was infected with aeromonas hydrophila (a bacteria found in fish and only found in people that are immunosuppressed). We treated with two weeks of flagella. The biggest revelation is that CJ6 is deficient in lactase, sucrase and isomaltase!!!! Wow! He was already not ingesting lactose because of our CF diet. In August, we started giving him Sucraid and Kirkman's CarbDigest for the Isomaltase. In the last several weeks, we have seen huge bursts!!! So....then I wonder......if CJ6 could not digest the carbohydrates that he loved to eat, what were they doing......they were putrifying and serving as a good food source for yeast and bacteria.....which were undergoing fermentation.....which produce lactic acid, carbon dioxide, acetylaldehyde (so he was basically his own little distillery). Crazy, huh?
During our 6 month gi wait at the local hospital , our pediatric immunologist (who also happens to be a DAN doctor) had run the ammonia, lactic acid and pyruvate. I finally got my act together and showed them to the metabolic geneticist this past May. Of course, we ran the tests again in a hospital setting with his nurse that immediately put the blood on ice (for ammonia) and performed the lactic acid (without a tourniquette). When they came back high a second time, he discounted it, saying that CJ6 must have struggled during the blood draw, accounting for the high lactic acid levels. CJ6 did not struggle.
Dr Buie did not think that the results were insignificant and told us to pursue the mitochondrial angle. Back in July, we made an appointment for Dr Marvin Natowitc at the Cleveland Clinic for June of 2009!!!! Dr Buie told us to get some workup done before the Cleveland Clinic visit with Dr Marc Korson of Tufts University. We had to apply to this doctor and we have been accepted, so we will be up in Boston for that 5 hour visit on Dec 9th.
In April, I also applied to be a patient of Dr Zimmerman's since we had never had a neurologist on board. I knew that he was highly respected and interested in immunology. I figured that we should just rule out silent seizures that might be happening during sleep. We were accepted but waited until October for an appt. It just so happens that Dr Zimmerman showed CJ6's labs to a leading diagnostician!
I understand that mitochondrial disorders are a spectrum. Even having been told that the problem may lie in Complex I, I also know that there are over 36 different proteins that are responsible for transferring electrons from NADH to Complex II. The ineffiency might be genetic, but I am wondering if CJ6's lack of efficiency might have more to do with his heavy metal uptake. .........
Well, CJ6 has persistantly had low hemacrit, hemoglobin, and high coproporphyrins. The porphyrin profile indicates lead uptake, but our immunologist wrote a grant and paid to have CJ6 undergo a cadnium gamma x-ray fluorescence of his tibia at Mt Sinai in NY. His bone is loaded with lead (comparable to someone who has been stripping paint off bridges their entire life). Yes, we have had CJ6's blood serum checked repeatedly for lead and it was always <3 ug/dL.
So, his mitochondrial inefficiency might be simply related to his heavy metal uptake rather than a true primary genetic disorder. At least that is what I want to believe until I am told otherwise......

Happy Anniversary by Rachel

2008-11-17T03:08:00.000-08:00

Happy Anniversary to us! We have been married for 7 years today and together 11 years total. This last few years have been very trying on our marriage, our life and our sanity but we are still here...together.

JL is a great husband, dad, provider and person. I am so lucky to have him in my life (in fact, everyone who knows him is lucky-he is definetely the person you want in your corner). Most of all he makes me laugh. And let me tell you when you have a child with ASD...a sense of humor is sometimes is the only thing that gets you up in the morning.

Do you want to know how we are spending our anniversary? We are going to another neurodevelopment pediatrician for a second opinion :) Not by choice, but after waiting 14 months for an appointment with a doctor who takes our insurance this was the day we got.

I love JL more today then I did when I married him. I am not sure I always tell him or show him this but it's true. Sometimes when you are pushed and pulled a 100 different directions you forget how important it is to reconnect with the people you love.

So on that note I am off to give my sweet husband a big hug!

A feel-good moment:) by Kirsten

2008-11-10T17:20:00.001-08:00

I had a great moment today that I have to share! I was picking J up at school/daycare today & when I walked in they were sitting in a circle on the carpet & the teacher was reading a story. J immediately got up & walked over to me, but then realized that he wanted to hear the story! He said "I'll be right back" & sat back down with the group. Not at the edge or in the back, but right in the middle between 2 other kids. He had his eyes on the teacher & the book with a HUGE smile on his face the whole time. The teacher asked lots of questions during the story & J answered each one! He started cracking up at the silly ending of the book too! Just standing there watching him in the group of NT (Neurotypical...ie 'normal'...ugh) kids, I don't think that anyone would ever have picked him out in the crowd. In fact, he might have looked like the MOST engaged, happy, excited kid in the class! It really made me so happy. There were a couple of other moms standing there waiting for the story to be over & I just thought "there is no way that they are looking at their kids with the amazement and joy that I am feeling right now". That is a definite silver lining to the whole ASD thing...small things that seem insignificant or ordinary to parents of NT kids can be huge accomplishments for us. I even find myself marvelling over things that my NT daughter does as well. They are little things that J did not do at her age (like asking another kid to play).
Thank God for moments like this one...they keep me going & sane on the harder days.

J's supplements...by Rachel

2008-11-10T05:28:00.001-08:00

So here is a look at J's supplement schedule to date:

Morning (this is all mixed in a shot glass):
1 tsp of fish oil with Coq10
1 capsule Taurine
1 capsule Acetyl L-Carnitine
1 capsule L-Carnitine
1 capsule Vit. E (Gamma E 500 Tocooherol)
2 capsule Methylaid
1 capsule Minerall
1/2 tsp essential GSH oral liposomal Glutathione
starting today 2 drops of GSE for 3 weeks

Afternoon (in his water with lunch):
1 capsule Probiotic
1/2 tsp Vit. C

Evening (in his water with dinner):
1 capsule Probiotic
1/4 tsp Vit. C

MB12 shots every 3 days
Authia Cream twice a day

And when I can I try and get in 2 more Methylaids and 1 capsule Taurine (though recently this hasn't been happening often).

Randomly he will throw this all up. Like this morning. Nothing like a little fish oil in the carpet to make it smell like the ocean!! He doesn't throw up immediately (like you would think) but within an hour after taking it all. Not sure what is doing it though? He has had a cold so maybe it's just a combination of post nasal drip and a disgusting mix of fish oil and such.

His ped. suggested taking it at night so I tried this yesterday but the problem with this is that I have to spread out the GSE (grapefruit seed extract for yeast) and the probiotic by at least 2 hours (if you don't spread it out they cancel each other out). Also, probiotics should be taken at night. It's just not enough hours in the day to get this all in.

I am just happy he is taken it at all - he went on strike a month ago and would not take anything. It sucked! It literally put me in a panic b/c I know how much the supplements help him.

I also have been awful about giving the MB12 shot. I have not been able to stay up late enough to make sure he is completely asleep to give it. I have to do it tonight! Last night he had on PJ's that zipper up (he calls it his "wolf suit" from Where the Wild Things Are) and there was no way I was going to be able to unzip it and give him a shot without waking him up.

It's a ROLLERCOASTER! by Kirsten

2008-11-05T07:38:00.001-08:00

Reading the post from Rachel made me think of the rollercoaster analogy. I always think of ASD as a rollercoaster & I imagine what part of the rollercoaster we are on. Are we at the top? If so, does that mean we are going to plunge down at any moment? Are we headed DOWN (there have been plenty of those days too)??? My favorite days are the ones that feel like we are climbing steadily upward in that comfortable space without the fear of dropping! Did I mention that I HATE rollercoasters? :)

Some days for us can feel completely 'normal'. We are fortunate that JC has made so much progress over the last year that there are days no one would ever know that he was on the spectrum at all. Then there are the DOWN rollercoaster days and times. Those are the ones when it really hits us & they pretty much suck. I wish I could say that the ups & downs make me appreciate the ups - mostly I have to keep reminding myself that things will get better. I try really hard to appreciate and be grateful for the good stuff. I really believe it is so important to do that - I just need to make an effort to do it.

Bad Night by Rachel

2008-11-05T05:10:00.000-08:00

Last night when I got home from work J was having a full blown tantrum like he hasn't had in a year. He was screaming, crying, kicking and only wanted my husband. When I came in the door he screamed at me "get out now" and didn't want me near him (which is unusual). He couldn't calm down - finally after about 45 minutes of this we finally got him into his PJ's and into our bed but he still was hiccuping and crying some. We haven't seen him do this in at least 8-12 months. He use to have these types of tantrums 3-4 times a week where he would be inconsolable. I have no idea what set him off - was it he was just tired or he is coming down with something or did he have an infraction to the diet. I have no idea.

My husband said what started it was he was in the bathroom for his bath and saw the Motrin bottle and said he wanted "white medicine". I had given him some earlier in the day b/c I thought he felt hot. My husband, JG, said no - then J started freaking out. Do you think he might not have felt well and wanted the Motrin to feel better? I don't know. We did end up giving to him a dose though.

I am taking him to the drs today to talk about diabetes testing (he drinks a ton of water), zinc + selenium testing and I will have him check his ears and throat to make sure he isn't sick.

I hated seeing him so upset last night - it brought back so many bad nights from before we started this biomedical journey.

Election Day 2008 by Sue

2008-11-04T06:20:00.000-08:00

On election day, it was a struggle to get out the door with the 2 kids and I dreaded bringing them to the polls with me but I had no other option. When I arrived at the local elementary school, I was relieved to see small lines. TR2 went into a stroller and CJ6 was told to hold the handles of the stroller. Finally, I arrived at the front of the line, and the lady checked my id, as I signed my name. I walked over to the voting machine, and told CJ6 to follow me. He was more preoccupied with the signs that indicated "This way ----->". He was closing one eye and lining his finger up with the arrow on the sign. As I arrived at the curtain, the volunteer told me to press the green "vote" button when I was finished selecting my candidates. His words must of permeated CJ6's brain because CJ6 slyly slide past me and into the booth. Within a flash, he had pressed the green "vote" button. What the f*@# just happened! I asked the volunteer if I could do it again, and I was told that I lost my opportunity. I was pissed!!!!!!!!!!! It is an hour later and I am still fuming!!!! Just because I have a child with autism, I am denied my democratic say!!! This was the straw that broke the camel's back! I am sure that I will look back on this years from now and laugh, but right now I am pissed, angry and crying as I type! Slowly and gradually, I feel as if I am losing my own identity!
This was just the event that summed up exactly how I have felt for the past year..... which is that I have lost any resemblance of my former life!!! I used to have the opportunity to read the newspaper, or go water skiing, skiing, etc.. Fun is no longer had. It has been put on the back burner for the sheer fact that my kids need my immediate assistance. I firmly agree that my children's health and well being is the top priority, but today's events just reminded me that I have lost "me" during this time.
It actually goes deeper than just foregoing the fun parts of my former life. Keep in mind, that I gave up my teaching job and this incidence reminded me that I miss that. I used to have adult conversations with my colleagues and stimulating discussion with my high school students. I also used to have 30 minutes of peace and serenity during my drive to work and back. I could listen to the radio or make phone calls. This was "my time" and I don't get this anymore. I used to dress up everyday, whereas I now wear the same cotton shirt and sweats. I know I will go back to teaching someday, and I will feel the same sense of fulfillment that I used to get, but I miss the kids and my former life.

The story of CJ6 and TR2 by Sue

2008-11-03T16:21:00.000-08:00

It was 20months ago that CJ6 received an official diagnosis of autism from the developmental pediatrician. He was 3 1/2 years old at the time, but we had suspected something was just not right a year before the diagnosis. CJ6 is now 5 years old and we are seeing gradual improvements due to aggressive biomedical interventions, and ABA therapy. My mantra is that in the race of life, CJ6 is the turtle rather than the hare. Of course, we all know who wins the race in the end! Putting my son's autism in this perspective allows me to hold onto hope because I don't expect miracles everyday. When the miracles do occur, I appreciate every little milestone!

I also have a 2 year old son, TR2. CJ6's younger brother has great joint attention and social skills for now, but has many worrisome red flags. TR2 has a complex medical history and his lab results suggest that he should be on the spectrum, but we are doing our utmost to prevent that from happening!

I will begin my story back in August of 2003, when CJ6 was born. We were anxiously awaiting the birth of our firstborn son. The pregnancy was uneventful, even though I had gained 56 lbs. A few days before the due date, the obstetrician measured my belly and was concerned that the child might be 11 lbs. Despite having been a 10lb 9 oz baby myself, I was horrified by the prospect of delivering a football player. The OB suggested that we do an induction the day before the actual due date. At that point in the pregnancy, I was sooooo uncomfortable that I was totally psyched to have it end! When I arrived at the hospital at the scheduled time, I was already having mild contractions and I was dilated 4cm. Theoretically, I could have waited a little longer, but they began me on a pitocin drip at 6am. Since this was my first child, I had no reference, but I thought that the contractions were very strong and asked for an epidural at 7:45am. Epidural can slow down labor, but I did not care because the pitocin was speeding it up. At some point, the fetal heart monitor began to drop, and the nurses rushed into the room. They turned me on my side and rocked me violently. CJ6's heartrate jumped backup. I was stunned and inquired about the incident. I was told that the baby sometimes grabs the umbilical cord. What? Are you serious! There is something inherently wrong if the child is choking themselves in utero. Survival of the fittest came to mind and I thought that if a child is grabbing their own lifeline, then maybe they were never intended to survive. At noon, I was fully dilated and began pushing. The contractions were happening so quickly that it did not give Cj6's head a chance to turn, so he presented "sunnyside up". By 12:45pm, CJ6 had arrived into this world. He scored a 9-9 on his apgar test and after he was swaddled, he immediately latched on. Both my husband and I were amazed that the delivery went so smoothly since our childbirth class informed us of so many horror stories. 30minutes after CJ6 was born, his face turned blue. I panicked, since we had a family history of heart defects. Once we unwrapped him from the swaddle, we realized that the rest of his body was pink therefore his heart was fine. His face turned blue because it had been bruised by my pelvis during the strong pitocin contractions. For the next 2 weeks, his face remained swollen and we could not see his eyes.

I exclusively breastfed CJ6 but at 2 weeks old, I gave him a bottle of Similac. My milk production did not seem to be keeping up with his demands. Occasionally, I would give a supplemental bottle, but it became more frequent around 4 weeks of age, when he broke out in a rash. I was told it was eczema and to treat it with Dove soap. There was no mention that eczema might be related to food allergies. At 6 weeks of age, he had such a severe case of cradle cap that we were sent to the dermatologist because CJ6's eyes were shut closed for 2 days. The dermatologist did mention that cradle cap is caused by the body's hyper response to yeast. This information was somewhat interesting since I was a biology teacher, but in reality, I only cared that my son was getting better when we used the topical steroid oil! For the next 2 months, CJ6 was colicky. The pediatrician placated me, a first time mom, and claimed that 3-4 hours of ear curling screams was typical. Only in retrospect did I figure out that it was occurring during the supplemental feedings. We tried all brands and types of formulas. I tried eliminating gassy vegetables such as broccoli and cauliflower from my diet. We even tried gas drops, but nothing seemed to help. After Halloween, CJ6 broke out in bumps. The pediatrician thought that it might be from eating the chocolate and to eliminate it from my diet. Recently, we discovered that CJ6 is IgE allergic to peanuts. Thinking back to that Halloween, I realized that I ate a lot of the coveted Reese's peanut butter cups.

At first glance, all developmental milestones seemed to be met. CJ6 sat and rolled over at the right times. He started to sleep through the night at 4 months old. He began army man crawling at 7 months, but never achieved the hand over hand method before he began to walk at 10 months. By 11 months, he was running and he never looked back. Crawling was so inefficient, and I didn't dwell on it because I was doing my earnest to keep pace with his running.

It was at this same time, that we moved to NY state. I needed to find a new pediatrician as well as a daycare provider because I needed to go back to work for financial reasons. I was terrified to leave my child with a person I did not know well, and focused on interviewing childcare personnel. Since I quickly needed to make a 12 month well visit, I randomly picked a pediatrician from a large practice because they offered late night and weekend hours. I had obtained a copy of CJ6's medical records from the previous pediatrician and I brought them with me to the 12 month well visit (2 days after his first birthday). I took a picture of him eating cake at his birthday party, but after this well visit we started to see feeding issues arise. Only now, have I realized that the new pediatrician gave CJ6 an extra 4th dose of Hep B which he should never have gotten. Another interesting point to make is that CJ6 does not make Hep B antibodies even after the extra shot. During my pregnancy, the OB checked my titers, and I don't make antibodies to Hep B either. I had a series of 3 Hep B shots when I was in college. Even TR2 does not make Hep B antibodies after having had 3 booster shots.

At 14 months, I recorded that CJ6 said his first word. It was "tickle". We used to tickle him into fits of giggles, holding back until he said the word. Now, I know that this is actually an ABA technique. Individual words followed, and at the 18month well baby visit, I was asked if he knew 50 words. Of course he knew 50 words, he could count to 20 , so that was at least 20 words right there and he could state every letter of the alphabet, so that was another 26 words. I was not asked if he was using words in a meaningful purposeful way. I was not asked if he pointed or would drag me to an interesting object. I was not asked if he would spontaneous hug me. I was not asked the right questions !! I was also back at work, and by moving, we had lost contact with other children that were the same age as CJ6. I was isolated in my own little world with no one to compare CJ6 against. This existence was short lived bliss. No one had applied the word "autism" to our family.

CJ6's feeding issues were not little issues in my mind. He would not feed himself, but was fine with me scooping up baby food. He would only pick up certain dry foods. He would forcibly gag and puke on both of us if he did not want to eat. Feeding would end with both of us taking baths! At first, I thought that this child was stubborn and I had met my match. Then I began to think of metabolic reasons for not eating certain foods. As a biology teacher, I was constantly lecturing about metabolic and genetic diseases such as PKU and fragile X. At the 2 year well visit, we met with another pediatrician in the same practice, and I mentioned my concerns. I was afraid that we missed a metabolic disease in the newborn screen when we moved states. PA only required 10 tests and NY had just mandated a new law with 41 different tests. I also suggested the possibility of food allergies, but was told that he was growing so I should not be concerned about the picky eating habits.

6 months later, my mother was watching television, and an excerpt about autism came on. My mother listened and started to say, wow CJ6 does this and CJ6 does that. She mentioned it to me, and I quickly slammed down the phone. How could she think that there was something wrong with my perfect beautiful baby boy!? On another day, and another phone conversation, my mother claimed that she could not make eye contact with CJ6. I retorted back that she needed to get down on the ground and play with him. Of course, my mother was 74 at the time and had severe back issues. Getting down on the ground was out of the question. Little did I know that I had been doing Floortime technique with CJ6. I was now becoming angry and hurt. I agreed that CJ6 had feeding issues and was able to accept the idea of a sensory processing issue. My mother suggested that I have Early Intervention check him out and let them decide if he had a delay or not. I agreed since the evaluations were free of charge.
Since we lived in NY, Early Intervention only runs up to age 3 and after age 3, the school district is responsible for the evaluations. Since CJ6 was 4 months shy of 3, a representative from early intervention told me to wait until he turned 3 and have the district evaluate him since they would be doing all their own evaluations anyways. Can you believe that!!! This women wanted me to wait during the child's most critical window of recovery!!!
I also needed CJ6 to have a doctor's referral. Since he was not yet 3 and had not been sick, we did not have a reason to see the doctor. I was told that I would need to pay $300 to have my son's paperwork filled out. This was incredulous! Persistence is the name of the game, so I called back, and got a different secretary, who very nicely filled out the paperwork free of charge. This is was the beginning of being a squeaky wheel!
In the meantime, as the 6 month window of Early Intervention evaluations took place, my mother talked to a friend who happened to be an OT and she suggested that I read "The Out-of-Sync Child" by Carol Kranowitz. This book made sense to me. Charlie had oral hypersensitivity, as well as tactile sensitivities. I had never realized that when he tripped at the beach or on the playground or at the Easter egg hunt, that his skydiving posture of immobilization was due to a hyperprocessing of tactile sensations. Wow, this lady made sense, so I googled her and found out that she was presenting in NY. I immediately signed up for the conference. I still did not believe that were dealing with autism. Sensory processing was a much nicer way to ease into it!

I need to take my sons on another medical roadtrip tomorrow, so I will continue my sons' history later in the week.

Halloween 2008 by Rachel

2008-11-01T04:27:00.001-07:00

Happy Halloween!

We had a pretty good Halloween this year. I wasn't sure if J would want to wear the costume and since he can't eat the candy it's a bummer. His preschool dressed up on Thursday, 10/30 but J was home sick from school. Friday, he wanted to go over our neighbors so I said let's get dressed in our costume and he did (it was a skeleton costume w/ bones on a black sweatsuit so it's about as comfortable as it gets). We wore it over to the neighbors that he loves - and trick or treated there. Then we went to one other neighbor and J did not want to interact with them at all - which is fine - he doesn't really know them.

Then we came home and passed out candy and he loved that! Everytime the doorbell rang he ran to it and wanted to pass out the candy. I think he finally put it all together that you dress up, go to other people's houses, say trick or treat and get candy in your bag.

This morning he woke up and said "put our costumes on and go trick or treating". I said "no, we have to wait until next year". Luckily, Kirsten is have her annual Halloween party today so J can wear his costume again today.

C's story by Jen

2008-10-29T21:25:00.001-07:00

It's a story that has been told before, uniquely his, and yet so similar to the rest of these children of autism. He was born healthy with 10 fingers and 10 toes at 8 lbs and 2 oz and I thought we were solid. He came home with us, slept in the little bassinet, nursed well, slept well and developed right along the continuum just like his older brother. He flipped over even earlier than his completely neurotypical and perfect 2.5 yr old brother and he was sleeping though the night by 10 weeks. At six months, he was cooing da-da and ba-ba and watching brother play. At the six-month well check he looked like a perfect little dream. Yes, doctor, yes, he's doing ALL of that! But, that's where the baby book entries just stop. There was no more talking, there was no crawling, the sleeping through the night was a thing of the past.

A week after he was so perfect at his 6-month check-up, he got croup and then we spiraled down. The croup came and went, but odd stomach bugs followed and very restless nights. We didn't hear the da-da and ba-ba anymore and we were told that he was too focused on motor development for now, but the speech would come after the crawling got underway. When the crawling didn't come by 9 months, one pediatrician started to suggest the possibility of early intervention by 12 months. I called early and got him evaluated thinking of they could help him with crawling then, why not? He was very frustrated by it. To my shock, he tested within normal range for gross motor, but delayed for SPEECH? Huh- at 10 months?? So, we proceeded with a PT to help with crawling (which was supposed to indirectly help speech by getting the motor skills underway??) Then, by 11-12 months, the crawling finally came, followed by walking and climbing. By 15 months, we were discharged from PT to speech, but then referred to a behaviorist and OT by 18 months b/c the speech therapist could make any headway when there wasn't any engagement.

So, there we were, by 15-18 months we definitely had a child with autism that was visible to the experienced person. Both the OT and behaviorist knew it, but knew that I didn't know and honestly, didn't WANT to know it. I kept hanging my hat on all of those "my son didn't talk until he was 5 and now he's [fill in success story]" anecdotes. The lacking of pointing and name response? I didn't see it. I had another child and I STILL didn't see it. We ultimately got him diagnosed at 24 months at our local Children's Hospital. They did about a 4 hour team evaluation and we were to return a week later for the findings. I didn't get it and I wasn't ready. Autism, to me, was some kid sitting in a corner, rocking and banging his head on hard surfaces. This wasn't my kid, it had to be something else. Some weird speech delay that would go away once words came.

He was so young that I almost didn't take it seriously. I pretended that an ASD diagnosis wasn't REAL autism- it just shared symptoms. I would find that thing that would work for him and by three, he'd be all better. I immediately met another mom with a similar aged son who tried GF/CF and the kid got remarkably better within months. Tons on therapy too, but I met this kid and he was FINE before age three even rolled around. Then, I met another mom through my OT and her kid's ticket out was the B-12 shots. He just "came out of it". I heard this from both his mom and MY OT. So, I went to find their magic. I got a DAN and did the diet and tried the supplements. I did the diet for a year and tried the supps, but I became very frustrated with how to get this 2 yr old to take this stuff. I left the DAN without any real satisfaction and tried this other program for brain injured children. They supported the diet, so we kept up, but we let the supps slide b/c it wasn't part of their program and we wanted to really put our full efforts into this program. That program didn't end up being a great match for us after a few months, we we had to begin again.

Now, my year between diagnosis at two and the third birthday was nearing and I hadn't gotten very far. We've had some words, but not close to age-appropriate and we didn't engage much at all. Early intervention was ending and we were moving to a new state and we had to make the school decision. So, I take on a private ABA program for the summer before the move, right after he turns three and I explore auditory therapy. We move and I enroll him in an autism support class (and I hate every minute of it b/c this is where I have now failed to get him OFF the GD spectrum.) It is at some point here that I wake the f--- up and realize that I'm going to have to ramp up my efforts and get this kid recovered, b/c NO ONE is going to do it for me. Modern pediatrics has NOTHING to offer me, teachers will only get him so far and no one else is this boy's mother. So, I end up meeting these other three moms through a yahoo support group and we all end up at the DAN conference. By birthday four, I am reinvigorated on biomedical and anything else I can get my hands on, I have three very awesome friends who can say "I know how you feel" and they're totally serious b/c they too deal with a son with autism and I've quit my job so I can focus on beating the shit out of autism. I have a husband too and he's one of the good ones. He's been right there, all the way and is immensely popular with our son. He supports everything that I want to try and has his own notions about what may help. I think he's more into acceptance than I am, which is good, because he helps me there. But, right now, I'm not about acceptance. I HATE autism, I don't embrace it. I don't want to accommodate it. I want to get rid of it. Believe me, I understand that my son HAS it. I deal with it at every turn, in every parking lot, in every grocery store, at every birthday party, at parks, at restaurants, at family events. I SO get it. Here's what I don't accept- that it's here to STAY and that it's an innate part of his person. It's NOT who he is- it's a barrier to who he is. He is the little boy smiling at me, running gleefully through the woods, eating chocolate chip cookies (GFCF) and swimming in the pool, but HE IS NOT AUTISM. I love my son desperately, but I hate the autism that's got him and I want to kick its ASS.

"Your kid has Autism...Good luck with that"...by Kirsten

2008-10-27T06:38:00.000-07:00

Well, I *thought* my pregnancy with JC was "normal", but looking back on it in hindsight I guess there are some things that were not. First and foremost, my father passed away when I was 6 months pregnant. It was a horrible, stressful, grief-filled time in my life. My pregnancy helped to keep me going and as upbeat as possible, but I am sure that my body was releasing a ton of stress hormones. I also got a flu shot and the Rhogam shot:( Knowing what I now know, I NEVER would have done that to myself or my baby, but I can't blame myself for that now (or I can at least TRY not to, right?). I also had high blood pressure toward the end of my pregnancy & I was bloated like a beached whale!

JC was an almost 9 pound, healthy baby who was born right on time. He seemed to be developing well, but (just like Rachel wrote) we struggled with projectile vomiting. We took him to the ER at around 7 weeks & he was diagnosed with reflux & put on Zantac. At the time I was breastfeeding & did try removing some things from my diet. I was not very knowledgeable at the time about all things biomedical, so I gave up & just figured that if the DOCTORS said that JC had reflux, then it must just be reflux. UGH!

JC was a very early developer in all ways. He rolled over at 2 months, crawled at 5, walked at 8.5 and I swear he said "hi" when he was 4 months old! He first "real" words started coming at around 7 months & he was saying things like "octopus" at 10 months! I was convinced (and still am actually!) that we had a little genius on our hands.

I can't really pinpoint a time when he regressed or when I thought that something was definitely 'wrong'....was it after his 12 month shots? Maybe. I do remember clearly that he was speaking and interacting well before that point. The summer after he turned 1, we started to notice his obsession with concrete things like letters, numbers, colors & shapes. He LOVED Baby Einstein videos. They were like baby crack for him. He probably could have watched them 24 hours a day if I let him! The first time he counted to 10 was the day before he turned 15 months old & I remember being so proud:) Little did I know at the time that my budding genius would be diagnosed with Autism 2 years later.

Right before he turned 2, he started reading. We could not believe it! It was completely self-taught & amazing to witness. We told our pediatrician about it, but he didn't really say much. Years later, while looking through medical records that I had gotten when CHANGING docs, I saw that he had written "hyperlexia". If only he had said that word to me at the time, I could have been researching and intervening at an early age. But since we can't rewind time, I try not to dwell on the past & just look toward the future. I am convinced that it will be a good one, but more on that another time.

We started Early Intervention around the age of 2.5. We noticed that JC was not interacting with other kids & we were nervous. He didn't lose language, but in hindsight we realized that he had gradually lost joint attention (no more pointing to things & looking at us to see if we had noticed...no more bringing us things just to show us...). He also wasn't responding to his name without a lot of prompting & hardly noticed that his baby sister was born. Even though my husband and myself both work in the education field (often with kids on the spectrum), we still didn't think he had Autism. I mean, he talked & had a huge vocabulary, he liked hugs and kisses, he didn't 'stim' like other ASD kids. Believe me, it was a HUGE learning experience for us. It is so true that "when you meet one kid with autism, you meet ONE kid with autism"...all of these people are so different from one another!

We finally got in to a developmental ped after JC turned 3 and got the dreaded "mild/moderate autism" diagnosis. Although we were told that he was probably very intelligent & that he could probably make progress, we weren't even given the hope of recovery at that point. We were told not to let him sit in a corner by himself, but to do SOMETHING. We were told ABA wasn't appropriate for him because he was "too verbal and too good at learning"...huh? We were also told that the GFCF diet was a load of crap & not to even bother trying it because it is too hard to implement. It was all along the lines of "your kids has autism....good luck with that".

So guess what I did??? I got a book (by Dr. Bock) and started trying the GFCF diet! I made an appointment with a local DAN! doc (who is also a general practitioner) & got some testing done. We started some therapies, school, social skills classes, OT...

Did we see results? YES! We have now been doing GFCF for 13 months. We have been to a few DAN! doctors and have tried many different supplements. About 9 months after the diagnosis, we brought JC back to the original Developmental ped & she looked at him, looked at his chart (back and forth a couple of times - I felt like it was a scene from a movie!) & said that they must have misdiagnosed him! He was "upgraded" to Aspergers Syndrome & we were told (and this is written on his paperwork) to get him tested early for gifted education.

We still have some ways to go, but I am happy with our progress so far. We just had JC's parent/teacher conference (he is in a typical preschool program/daycare 4 full days a week with 15 hours of PCA support, 1 hour of speech, 45 mins of OT)...the teacher said that he has made so much progress since last year & that his progress has been rapid these first 2 months of school. She expects it to continue this way & we agree (insert *positive thinking* here:)).

Our current & recurring issues are:
Intermittent Constipation
Low frustration tolerance
Anxiety
Obsessiveness (numbers)
Rigidity (usually related to things being in 'order')
Social interactions with peers

Our current biomed treatments are:
GFCF diet with goal toward removing SOY
MB12 nasal spray
Glutathione transdermal
Magnesium Vit C
Cod Liver Oil
CoQ10
Carnitor
MethylAid (B vits, TMG, folinic)
Biotin
P5P
Calcium
rotated Yeast tx (Ketoconazole, Diflucan, Biocidin, GSE)
Probiotics
Zinc

I agree with Rachel that this would be so much harder (and more lonely) without my ASD Moms Rock friends. I have learned so much from each of you & your little guys. I want them healed as much as I want it for my own guy. I know we can get there together.

J's Story - the basics..by Rachel

2008-10-26T04:16:00.000-07:00

My pregnancy and J's birth was normal (though my preg. was 42 weeks and I was ready to give myself a c-section) .

J has had all his vaccines up to 3 years and I had the flu shot and Rhogam shot when I was preg. with J. I wish I had known then what I know now about vaccines. I do believe the kids need to be vaccinated against certain diseases (think polio) but the vaccines need to be cleaned up and they need to be spread out. This weekend I heard 2 doctors say vax shouldn't be given at all to kids until they are 2 and then every 6 weeks or so. I would have never gotten my flu shot or the rhogam shot had I know they it was going straight into my bloodstream and then into the fetus. Ugh - hindsight is always 20/20.

J did have acid reflux and it wasn't dx'd until 4 months. So, he sounded like darth vader b/c the formula would gurgle in his throat and not actually come out. We took him to the drs for it a few times and to the emergency room once and no one dx'd it until 4 months. He slept in his car seat b/c he couldn't lay down flat on his back. He did not sleep a solid 5 hours until he was 4 months. Finally, I went to his ped and saw a nurse who finally said "I think it's acid reflux" and gave us a perscription for Zantac. This seemed to work for him and he was on it until he was 1. J had eczema. J also use to wake up in the middle of the night screaming - he was maybe 9 months when this started - he couldn't be soothed. It was awful to watch b/c he was still somewhat asleep and would thrash and scream - he had really hard stools though (we gave him Miralax to soften them and this helped) and I think this is what hurt him.

He had a wicked hard time transitioning and trantrumed a lot. I was the mom you see walking out from the store with her child kicking, hitting and screaming at her. I remember walking out of a local amusement park with him screaming and crying so loud that one woman said "what an awful way to end the day" (hey, thanks lady that's what I wanted to hear). He always had language but he couldn't request what he needed or wanted. He never pointed at things, never took my hand and brought me over to something he was interested in, never followed an airplane or brought me toys/books he loved. All things that I know now are normal developmental milestones for kids. He also stims - but it's when he is excited so if we tell him something we are going to do that he loves he jumps around and flaps but we just thought he was really excited about it. Also, he loved/loves looking at himself in mirrors (or door knobs, sunglasses anything that give him a reflection). He smells everything - literally everything.

He did develop normally - spoke, sat-up, crawled, walked all on time. We went to his old ped (who I loved) at 18m for a cold and she said "how many words does he have" and it was like 15 and it was suppose to be 18 (not sure what the correct numbers were) so she said if he doesn't have 3 more words in 3 months then I think you should call Early Intervention. So, J didn't have those extra words by then and I called and he was evaluated and received speech therapy. At 2.5 we went into his ped. for a cold or something and she stated throwing around "J might have Aspergers" and I was like "what!" - I had no idea what she was talking about and we didn't think anything was wrong with J. I mean we thought "ok, maybe he has a speech delay and some attention focusing issue but nothing more then that". Plus, we had everyone in our life saying "oh, boys speak later" or "kids all have tantrums like that" or "he is a late bloomer" so my husband and I didn't think anything of it.

At J's 3 year well check up my husband and I went together. His ped said "I think you should have him checked by a neurodevelopmental ped." So, we made an appt with a dr she recommended. Got an appt on July 27, 2007 and were told that he had mild/mod autism.

Honestly, that day was the worst in our lives. I remember at the end of the eval the dr is calmly explaining everything he saw that day during the eval and I said "what is the bottom line" and he said "J has autism" - after that I pretty much blacked out and don't remember the rest of the meeting, the drive home and pretty much the next month of my life. I went through the motions but I don't really think I was living. I can't remember one thing about the month of August 2007. We were on vacation at my parents in New England and I knew in September I had to do something - since the IU was off for the summer and I had J enrolled in a typical preschool starting after Labor Day. So, I pretty much took a mental vacation the month of August. I didn't tell anything (close friends/family) but we just let it marinate that this was our life now. All the things we saw in J that we thought were "just J" had a name called "autism".

My friend, Kirsten, who will be blogging also and I met at a My Gym class when the boys were 1. They were the only 2 kids in the class who did not want to sit for the songs but just wanted to run around the gym. And we bonded over this. We exchanged contact info but nothing came of it after the 10 week session was over. Then a year later when the boys were 2 - she randomly emailed me after having her 2nd baby - and was home again on maternity leave and thought we could get the boys together. So, we had played dates with the boys and got reacquainted. The summer of 2007 her son was dx'd with Asperger's. Have you heard the saying "friends come into your life for a reason or a season" - Kirsten definitely is in my life for a reason.

When J was dx'd like a month after her son - I sat down with her and another friend of hers who has another child on the spectrum and literally took notes about what I should say to get the right therapies for my son through the IU (Intermediate Unit - county support for ages 3-21). ThHe neurodevelopmental ped who gave J the dx had given me a list of therapies that he thought J should have. Then I went to the IU with that list and what awesome verbage the ladies gave me to get what I needed.

So...J is in a typical preschool with a itinerant teacher 2x a week for 45 minutes (this gives J and the teachers support). He gets speech therapy for 45 minutes/week, OT 45 minutes/week, ABA therapy for 15 hours/week and we supplement this with a social skills class once a week for an hour. He does great in school - no one knows he has ASD and he is progressing. At his 6 month eval. (though it was actually 8 months from our last appt it was 6 months of therapies) with the same neurodev. ped who gave him the dx he was "upgraded" to PDD-NOS.

Biomedical...again Kirsten was a life saver here too...she had heard about the GFCF diet before I even knew what she was talking about. She looked up a DAN! in the area and we both went to see him in the Fall of 2007. He did some tested and we started the boys on GFCF and some basic supplements (probiotics, fish oil, vit. c). J had huge feeding issues (very picky) so the diet was hard - literally at first he only ate cereal bars, pizza with this homemade "fake tomato sauce" made of beets/carrots/spices that I made for him. Well, then he went on strike at Christmas that year and would not take his supplements. So, we went off the diet and off the supplements.

We started feeding therapy in March 2008-July 2008 and this was a miracle for us. In March of 2008 J ate:
Gram Crackers
Grilled Cheese and French Fries (only out at restaurants)
French Fries at home
Red Popsicles

We went to an autism resource program who had out patient feeding therapy. At the initial intake the Dr. said to me "with the limited foods he is eating he sounds like he should be in an in patient program but we can give out patient a try". I didn't want him in an in-patient program since it was a waiting list so who knew when they would call us to come, he would miss school and his other essential therapies and it was like a 3 month program where you had to sleep at a hospital. So, we did out-patient and it sucked - it was intense and J was hysterical and I was hysterical watching him BUT he ate. This program was behaviorally based and very ABA structured. It was tough but I can now say that he eats pretty much everything. A small list to compare to the pathetic one up further...
Broccoli
Sweet potatoes
peas
carrots
beef stew
chili
chicken
apples
pears
bananas
kiwi
watermelon
hot dogs
etc., etc.

We went to a DAN! conference in Cherry Hill, NJ in April 2008 - my husband and I - and it was awesome. It gave us so much hope and for my husband he really got on board. He was very skeptical about the biomedical portion. It was hard for him to buy into. But after hearing the drs and scientist speak so knowledgeably and hearing first hand the parents stories of recovery you have to believe there is a link between ours kids physical ailments and their behaviors.

So, we made an appt with a DAN! dr we heard speak there for May 2008 in FL. And he started us again on our GFCF diet and took a ton of labs. Here is an overview: J has high tin and mod. levels of lead, yeast/bacteria in his intestines, he is allergic to gluten and dairy products (IGG). So, we started him on supp. again. Here is his list:
Pure Fish Oil with CoQ10
Methylaid
Mb12 shots
Vit C
Vit E
Calcium
Minerall
Probiotic
Taurine
Acetyl L-Carnitine
L-Carnitine
Diflucan for 10 days (regressed slightly - by this I mean more tantrums, frustrated)

Authia Cream
Epsom Salt Baths

I just added Glutithoine liquid this weekend.

The fish oil, methylaid and Mb12 shots have been something we have seen a huge improvement with. The Fish oil reduced his tantrum to barely anything and he transitions 100% better, the methylaid and mb12 shots increased his quantity of speech and the mb12 shots the quality of his conversational speech, also the shots helped with his eye contact. Also, the acetyl l-carntine has helped with him with his fine motor skills.

Also during this time, I met two other AWESOME mom's of kids on the spectrum Jen and Sue - who will also post on here. We met at another My Gym playdate that the local autism support group put together for kids on the spectrum. I really don't know what I would if these women weren't in our lives. These friends mean the world to my family (especially to me) since they are my life support. I don't really even have words to explain how much these women mean to me since they truly understand the struggles and triumphs there are with J. I can't thank them enough for letting me into their worlds.

We still have a lot to work on and every time I go to a new conference or hear of something that helped another child recover - I think "oh no, I have to go to that dr or get that supp." We are thinking about switching DAN! drs b/c I think I need someone who isn't as gung-ho about chelation (we did try a oral DMPS but Jake got yeasty). So, that is where we are now.

We just got back from a conference this weekend and there is a list of things I think I need to add Zinc, Selenium, NO SOY, Glutithione. I need to organize what I have had for tests and see what I need to test.

So...with all that said - my husband and I are trying to get rid of this frickin autism and get J feeling better. His new Ped (who is the first DAN! we went to see) said that even the low levels of yeast that J has makes him feel like he is walking around with a low-grade flu/fever all the time. Who wants to feel like that?

We love J- obviously - and just want him to feel better - if once he feels better and doesn't have a leaky gut or inflammation or anything else and he still has some of his quirky things (smelling, stims) then we will be happy with J as he is knowing he is "physically" ok. But how can you as a parent not do everything in your power to make your child feel better?

Off to start our day :) Thanks for reading.

ASD Moms Rock - Rachel

2008-10-24T17:51:00.000-07:00

Hi - We are starting this blog for the original ASD Moms Rock group can each post our autism adventures. We will all try and journal about our everyday life as moms with kids on the spectrum. There are four of us who have very different children but very similar struggles and triumphs. Since we all have very different personalities I think we can all bring a different perspective to what a day is really like in our shoes. I truly hope you enjoy this. I think it will be therapeutic to us too.