J's Story - the basics..by Rachel

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.