14-6-2010 - Gluten allergy????NEED ADVICE

My mood while writing this blog: happy

Quick update on Logan, he is 17 months today. Since 12 months he has had lots of regression. but is currently walking and talking some. I have never connected his issues with his diet, until about 3 weeks ago. Logan was diagnosed with Dopa responsive Dystonia, a form of infantile parkisons. He had random movements of his arms and neck, seizures ruled out. He was also diagnoses with a chromsomal deletion, which through genetic testing we have discovered his father has the same deletion but with no heart, neuro, or developmental issues besides ADHD and some gastro issues. Logan had good days and bad days. My happy social 12 month old would wave hello, say hi, do patty cake. He listens and understands what I am saying. Over the past months I have noticed a difference, no talking, regression of skills (which he had physical regression due to the dystonia and hypotonia) Of course the FIRST thing I think of is Autism, which broke my heart. Some days he was happy and social, other days he was a terror. I mentioned my concern to his physical therapist whom we see at home once a week since October. She said absoluteltly no to Autism, and that it seems Logan literally does not feel well. So for MONTHS I have observing his behavior, trying to find a variable in which flips the switch. Like when he was younger some days he could stand, some days he couldnt. It took me threating to leave his Pediatrition and a 2 day PICU stay at Yale for the doctors to begin taking me seriously for my concerns, alas his chromosome disorder was diagnosed. SO, since I am a Google mom, I get online and begin searching spectrum tendencies, variables involved and such. And I come across Gluten free Caseine free diets and how they affect children with autism and g/c allergies. Out of all the DOZENS of diagnoses that doctors have given Logan, dozens of test and scans, no one ever mentioned that DIET could affect him. As a baby Logan was breast fed for a year, began solids at 6 months, table foods at 12 months. He is quite often constipated, and then has the runs the next day. I have mentioned this to the doctors and litterally shrugged it off myself. I even went as far as getting his Lead levels checked. So I told myself ONE more try to see if I can help my son. 2 weeks ago I cut gluten and dairy from his diet. There was NOTICEABLE change. After 2 days he used saying " more" consistantly for food and play(which we have been working on for MONTHS) He began doing pattycake again, waving, saying hello.HE WAS HAPPY. He was also pooing once a day, with out any issue! A few days later he woke up in another wonderful mood, smiles calling for mommy and such. I gave him a Fig Neuton which contained Gluten. And hour later he was miserable, no talking or eye contact. His balance was off. 12 hours later he passed a very hard stool, in which he had lots of trouble passing. So obviously he had some sensitivity to gluten. 2 days later I gave him a little sippy cup of milk and water. and hour later he was fine. All day he was fine, happy and content. Today, he is happy, smiley, talkative, mimicing. He says hello and currently stands up by himself without pushing off of anything! He has been gluten free every since, and I have had no concerns. I finally feel like i hit the hammer on the head. Has ANYONE every heard of this happening or have been in a similar situation?? As I said earlier on his father has some gastro issues and adhd. My brother has chrones disease and a cousin has colotis. Any imput would be very helpful! I know in my heart this cant all be a coinsedence!