written in September 2010 by a parent:
Like her older brother, my daughter was a terrible eater. At 11 months she only ate really thin oatmeal cereal and YoBaby yogurts. I did a swallow study at 12 months which revelead nothing. After that she started speech therapy and began to eat more solid foods (bananas, rice and ground beef, pancakes) so I thought everything would be okay. Just before 16 months I realized that her eye contact was waning, she had poor imitation skills and wasn’t picking up any language from the speech therapist. I was told by everyone, including my pediatrician and ST, that everything was okay. My gut told me something was wrong, so I took it upon myself to schedule an autism screening through Early Intervention (which she passed), and a hearing test – which she failed completely the very next day. In the next 18 days, I scheduled sedated hearing test (ABR) which proved she could hear, an appointment with the Developmental Pediatrician who told me that she was severely autistic, and was less than 1% for every measure (cognitive, speech, fine motor) at 17 months of age.
I then did a LOT of research and contacted several rescue angels because I knew nothing about autism. Withing 24 hours my daughter and I (since I was nursing) switched cold turkey to a GFCF diet. Within the next 2 weeks, I got her into an intensive ABA program, scheduled private speech therapy and aqua therapy on top of what EI provided. I also went to see a DAN doctor Dr. Compain in Rhinebeck, NY). Before completing the bloodwork, she started B12 injections, probiotics, Transfer Factor, Calcium, Nystatin and Valtrax. I was told to phase everything in slowly, but true to my personality type, I just started everything at once. Within a month her eye contact was re-established and all her stimming behaviours (head banging, hand-flapping, spinning) were all gone.
Over the next few months, I added more supplements (e.g. Vit A to E, Zinc, CoQ10, gluthatione, NAC). She continued to improve in all areas except for eating. By her second birthday all she ate was Stage 1 rice cereal and goat yogurt (she stopped eating the coconut milk yogurt so I had to switch). Even though she attended an autism program, her therapist could also not get her to eat and chew. At this point, even with the yogurt and supplements she would still throw up 4 times a day. I even tried prevacid but that did nothing.
I contacted CARD (http://www.centerforautism.com/) and they sent me a feeding specialist to my home just after she turned 26 months. She spent all day Saturday, Sunday and Monday at my house teaching my daughter how to eat solids using ABA principals. She worked with her on Saturday and by Sunday, I joined in and practiced the technique with her. By Sunday night, she was eating chicken, strawberries, bananas, fish sticks, chicken nuggets etc! It was truly amazing to see. On Monday she shared the technique with her therapists so there would be consistency.
For the first time in my life, I’m able to sit down at the kitchen table and have a meal with all my kids, instead of carting food up to my bedroom, plonking them in front of the tv, and poking cheeks! YAY! I highly recommend CARD’s service. It’s very pricey (app. $3500) but if you know someone who can afford it, it’s well worth it! It’s been 3 months since the feeding intervention and she’s still eating with relatively no problems.
In addition to all the supplements I’ve been going to my DAN doctor for weekly IVs (gluthathione). The IVs feel like magic to me. At first I did them once a month and would always notice something amazing happen afterwards (e.g. she recognized her father again after many months, started to read books instead of page turning, said “Mama” etc.) Now that I am going for IVs (“PK Flush”) weekly, I’ve witnessed a dramatic improvement in her behaviour and speech. Just this past week, 10 months after receiving her initial diagnosis, she had another ADOS test. The Developmental Pediatriation told me that your daughter “no longer meets any criteria that would place her on the Autism Spectrum.” I was thrilled!!! Nonetheless, I am still strictly continuing with the diet, the supplements and the weekly IVs.
She still has speech delay and hypotonia, but at least now I have hope that she will be able to interact with her family, siblings and in society as she gets older. I hope another parent finds this information helpful towards helping their child recover.
michelle@allergysense.com - Thank you for this informative post! My son went through something similar and I happy to say he well on his way to recovering.
Currently we administering gluthathione orally. Did you ever try it orally or did you go straight to IV? (Just trying to avoid IVs whenever possible)
Also, I have had great success with chelation via DMSA. Is that or something like it part of your routine?
gfcfmom - I will try to find out from the parent who wrote the post. I have no experience with glutatione–but I am glad to hear it working for you. Thanks for sharing that the oral glutathione works for you and that you can avoid the IV's. That is nice for kids. We never used chelation, although we did have great success with the Biofilm Protocol which removes metals and bacteria from the gut. I do know many people who have seen benefits from chelation. Here is a list of Top 10 Things That Have Helped My Kids