Tonsils/Adenoids take 2 by Rachel

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

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

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

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

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

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

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

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

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

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!