Bipolar, Adhd, Sensory Integration?

[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

[Ursa Major]

Is your son still consuming dairy and/or soy? Dairy can cause behavioural problems and constipation, and could be a problem for him. He also sounds like he might have Asperger Syndrome (which could also be helped by taking casein out of his diet, as well as soy, on top of having eliminated gluten).

[Ridgewalker]

I'm not even sure you were finished editing your post, but I had to respond right away-- your post is sooooo familiar to me!!!

This is very interesting to me, because both of my sons have several of your son's symptoms... But they resolved/improved on going gluten-free, and return when they are glutened.

My son Lucas is 7 years old and still has poopy accidents when he is glutened. And yes, this has even happened at school (more on that in a minute, don't panic.) Most of the time it is the small amount of leakage, like you described. Sometimes it is a full blow-out, but that is rare these days. Potty training this child was a nightmare, and basically went on for nearly 4 years... and we still have to have "refresher courses."

My younger son, Ezra, has what our doctor terms "bipolar tendencies." These, too have improved but return with a vengeance when he's glutened.

They both are likely to wet the bed when glutened.

I'd encourage you to remember that blood tests, while helpful, aren't perfect indicators of whether gluten is being ingested. For example, there isn't a direct correlation between high positive blood test results, and severity of symptoms.

I could totally be wrong, but your son's symptoms sound so much like my kids' that I have to wonder if he could either still be getting glutened somehow, or if he might have another intolerance-- such as dairy or soy. Both of those foods can cause glutening-type symptoms in children who are intolerant to them.

One thing that stands out to me is the cyclical nature of your son's potty accidents. It can indicate more than just bipolarism. I can tell you absolutely that before going gluten-free, Lucas's accidents would ebb and flow... he would be ok for a few weeks, and then have accidents for a few weeks. We'd think we had this potty thing down, and then boom, weeks of misery.

My heart goes out to you, because I know what you're going through!!! The loads of stinky laundry, the worry and fear that your child is going to be picked on, or that you're not doing right by him. I can't tell you how many times I've wondered if I was a competent parent... because I couldn't even seem to potty-train my child. (((hugs)))

As for school, try not to stress too much. I know-- easier said than done. I sure did when Luke was about to go into kindergarten... But I had no one to talk to, and didn't even know he had any physiological problems causing his accidents. What I also didn't realize then is that it is NOT uncommon for kindergartners to have accidents now and then even in school. If your son does have an accident now and then, he will NOT be the only one. This, I promise you. Luke's kindergarten teacher (a 30-year veteran) had parents bring in an extra set of clothes for every single student, to keep there in the classroom.

Even in first grade, when Luke had a little accident, his teacher asked if I would send him a change of clothes to keep at school-- and said that she had a couple other students who had done that as well.

Have kids ever made smart comments to my son about it? As you can probably guess, the answer is Yes. A couple times. And it does wrench at my heart to hear about it, but you know what? My son hasn't been nearly as bothered by it as I have. Because the kids who make a comment are the kids who aren't very nice to begin with. It's only ever been 1 or 2 kids that have said anything here and there... and it's never been my son's special friends. And it hasn't been tormenting teasing... just a comment or two.

Instill in your son what is nice to say, and what is rude, and he will remember. You WILL get him through this, and the kids will NOT remember it forever... at that age, they don't remember much the next week.

My best advice to you on exploring options for his symptoms, is to look at everything he's eating. Don't rely on the blood tests to tell you if he's getting any gluten. Just last month, I had to do a complete scrub-down of my kitchen, in every little corner, and replace our gluten-free toaster again-- because my kids started showing reactions that I couldn't track down. 2 days after I did that, the symptoms began to go away again.

Even if you're sure of your kitchen, what about the pre-school? Babysitter's house, or grandma's house?

If you're sure he's not getting gluten anywhere, take a look at some other things, such as: dairy, soy, or food dyes. Any of these are strong possibilities. A food diary may help.

Now that I've written a darn book for you... sorry, I tend to get long-winded sometimes. Your son reminds me so much of my boys!

I hope some of this helps. Stick around and keep us updated!

[okgrace]

Hi Momof 3boy,

My dh has stuggled recently with the potty training thing. She was totally trained until we went on the diet and she was accidenlty glutened and we have had big time accident since then, it was about 3-4 +weeks before things have just begun to straighten out.

I am also an OT and all the things you describe sound common for what your son is going through. One theory is that when kids focus developmentally is in one area that other areas will not progress as quickly. So in typical devlopment a kid might start walking and stop talking as much for a few weeks and then it reverses. With a child as gifted as your son it sounds like he has been putting a lot of attention in one area so the social piece has suffered a bit. And when you have this phenomenal ability and a big gap in other areas you can expect some sensory pieces or at least behavioral pieces to arise because of the big gap. Is it hard for other people to understand or even you sometimes? You have a brilliant child who has not entered kindergarten but is reading on a third grade level but can't control his bladder? I have a good friend with this same issue, her child only reads at a second grade level thought . She has had success recently with potty training using a reward system. I have wondered about celiacs with him so it is interesting to read your post.

Also if he does have severe SI issues than self regulation and sensing his bodies signals can be a real challange, but I am sure you know this. Like I said, I don't have a lot to offer, but I am here and I can imagine how difficult the situation can be.

Good Luck and if I can be of any help let me know. Has the OT set up a sensory diet for you at home?