Momof3boys

I need some help. My 5 year old son was diagnosed with Celiac's at 4 and has been gluten-free for over a year now. His blood levels have been normal for the past 2 times (in November 2007 and 6 months before that). So we are doing well with the diet. My concern is that he has been diagnosed with Severe Sensory Integration problems and is in OT. He is a sensory seeker and constantly runs into walls, doors and picks up friends, hides under cushions, tables etc...... He is still leaking stool 2 times a day (small amounts because he witholds when he needs to go). We have on Miralax daily and take him to sit on the potty 4 times a day. He has seen a behavioralist for a year to help with the bowel training but he gets almost trained and then he has major regression. He has done 3 times this past year. His psychiatrist doesn't like that because "cycles" are signs of bipolar (and my sister is). They are also trying to decide if he is ADHD as well as the sensory integration problems. I don't know what he "has" I just know we are so frustrated and poor baby, I know he is too. We have been "potty training" for 3 years now and he has a 3 year old brother who is completely trained. My 5 year old will still once a week get so "hyper' focused he will pee in his pants too. He is in a pull up at night and it is full each morning. He is extremely bright and they are already testing him for gifted because he reads at a 3rd grade level. He is very immature socially and can get in trouble at school for being impulsive but OT seems to help. I just don't know what to do anymore. We are having his IEP this month and a nurse, ot, nutritionist, A level special ed teacher, pre=school teacher and kinder teacher are all coming. Does anyone have any children that have had similar experiences? I"m so worried for kinder and having bowel or urine accidents and him being ostracized. Thanks for letting me vent. I just feel so overwhelmed with him plus I have

I am a speech therapist in an elementary school. But I am also a mother of a 5 year old with OT and Celiac's. So at his IEP I am having a nutritionist, nurse and all of the other participants as well. I would contact the speech therapist or diagnostician who did the initial testing and as part of the IEP I would write in that your child can not have gluten and needs special permission to bring in own lunch. I would be sure to mention that they can't with hold a "Free and appropriate education" or "FAPE" from your child because of a disease. I would mention that that would be against federal law. I would push for your child's health and make them make the accomodations. Go to through the special education route and they can tell Headstart what to do! I would not let them push you around! You just have to educate yourself with the law and then let them know you are aware of your child's rights. I hope this helps! Tell them you would be glad to have a doctor's note if they wish.

I would just say to stick with it. My son started having diarrhea 6 times a day when he was 2. We finally got referred to a bad GI doctor and she said he was too big of a kid to have celiac's disease so she didn't test him (I thought she had). Welll a year later he was 3 and still not potty trained and having a combo of diarrhea and contstipation. So we took him to a different doctor and they did the blood test and biopsy and low and behold he did have. And now I have been diagnosed as well. So I would stick with it and trust your instincts even if he doesn't fit the "classic" case. My son didn't, and he definitely has it. And at age 4 we are still having problems with potty training and I think it is because he is old now and missed the "bet" time to potty train!

An interesting thing has occured in the NM group. My son was born with a club foot and my friend's son with Celiac's disease was born with a cleft lip. Are there any other people out there with kids with Celiac's disease and a birth defect as well?

I am a newbie and trying to still figure it all out. Are we supposed to have MSG? Or does it depend on how sensitive you are? TIA!