[Mahre]

I am so excited to find this forum!!!
I have spent many hours reading the special needs forum on MDC, but just found this one! Yippee!! Praise the Lord! I need so much advice, guidance, and help!!

My DS has several challenges... He is 48 months old.
-Apraxia / dyspraxia
-Complete speech regression at 20-22 months. Silent accept crying and eEEEE for about 6-9 months. Slowly speech has returned.
-Sensory Processing Disorder
-Low Muscle Tone
-Benign Rolandic Epilepsy
-Reflux
-Secondary Carnitine Deficiency - Energy, activity regression, solved with carnitine supplementation.
-Soy Intolerance
-Failure to Thrive

I read the article about Apraxia, Allergy, and Malabsorption Syndrome awhile ago. I love that article!!!

Now I don't know what to do next. I know he has food intollerances, but the only one I have tracked down is soy. I don't know how to figure out what other foods he is intolerant to and what to do about it.
What kind of doctor can help us? We live in Michigan. Where would I take him? Who can educate me?

-Low Muscle Tone at birth - floppy
-In the first few weeks after birth his skin peeled 2-3 times. He peeled more than any doctor said they had seen before. Like a lizard or snake (sorry DS, it is true).
-He was born with marks/scrapes from scratching himself in-utero.
-Watery stools at birth. Poop water/diahrea into diaper cover. Hard to tell urine from poop. The watery stools only occurred for a few weeks, when he was 3-4 months old and I have not seen them since.
-Undigested food in stool. Off and on diahrea. Sometimes he can eat a raising and it comes out rehydrated, like a grape.
-Always itchy tummy, no visual rash on belly.
-Pees in his sleep without waking up.
-swollen dark "bags" under his eyes"
-Picks at self, nails, cheeks, lips, nose, compulsively till he sometimes bleeds and keeps picking.
-Ring around anus from time to time.
-Rosy rash on cheeks often lately.
-Red swollen finger tips, from hang nails, but even when not picking at them they are still abnormally red.
-Dots around his mouth that come after meals, disappear at night and then return after a meal.
-28-29 lbs at 48 months
-Soy products of any kind cause varying severity and varied symptoms including, yeast infections, dots around mouth, severe diaper rashes.
-Gags/vomits fairly often during meals - food intolerance/SPD/Reflux - no idea

We are sure he has other food intolerances, but are not sure what they are. We tried skin testing when he was 2, but nothing showed up. We know soy is a problem, but no hives and nothing anaphylactic. We have read that skin testing is a poor diagnostic tool.

I believe that if I can get him on the right supplements, figure out his food intolerances and eliminate those foods that he will become an active, strong, happy child. I believe that his challenges are treatable. Much easier said than done!

Please guide me in the right direction. We have eliminated most dairy most of the time. I don't think I notice wheat/gluten being an issue. I question some fruit and beans being an issues, but not sure. How can I figure this out for sure.

An elimination diet on a skinny 4 year old scares me. How do I do it right? I really would like a dietitians help, but can't seem to find anyone to believe in my theory of food intolerances being the problem.
I think I have told you enough of the long story.

Thank you so much!

 

[mamafish9]

Welcome!

Quite a few of your son's issues could be a sensitivity to salicylates, a naturally occurring chemical in food (fruits are highest, you can see a list here http://www.salicylatesensitivity.com/food-guide). With my son, that caused lots of belly scratching, poor sleep, red cheeks.

To test this, remove ALL things on the food guide that are not on the low sals list for a week - you should start to see improvement if that is one of his issues. If it is, supplementing magnesium, molybdenum, and B6 will help build his tolerance - and reducing the amount of sals he consumes will probably be necessary long term.

The other thing I'd look at for undigested foods and tummy issues is low zinc. The classic test around here is to eat beets - and then watch for pink pee/poop. But undigested food generally means low stomach acid, and the most likely cause of that is low zinc.

So I'd start by trying to add some nutrients via supps, minerals (trace minerals + magnesium), and some B vitamins. At a bare minimum, zinc and mag - your list of symptoms matches very strongly with both zinc and magnesium deficiency. And I'd try a low sals diet for a week. And see where that gets you.

I'll also say that he'd be a very unusual kid if he has serious digestive issues and dairy and gluten aren't a problem for him. My son is autistic, and a year ago, started showing lots of digestive problems. I couldn't trace any particular reactions to casein or gluten, but we removed them both on an elimination diet. When we trialed them, they were both clear problems - GI issues initially, then behavioral (they made his autistic symptoms worse). After 8 months of gut healing and addressing nutrient deficiencies, we have successfully reintroduced both, so it's not necessarily a long term thing, but I'd definitely consider at least a 4 week trial diary and gluten free - not necessarily as your first step, but worth doing unless adding vitamins and minerals magically fixes everything! Failure to thrive is a big red flag for gluten intolerance, for example...

Oh, and one other thing you might consider is a hair test to look for metals toxicity. My son was toxic in antimony from his bed mattress and PJs - it's not just mercury that can cause issues for our more fragile kids.

 

[kjbrown92]

Also keep a food journal. The rash around the mouth if it appears after some meals but not others could be tracked down. As well as the red rosy cheeks (which can be from salicylates or from food intolerance). The food journal should be a master list: all ingredients in all foods eaten on that particular day and all symptoms (sleep, poop, skin, itchiness, mood, etc.). If he is on meds/supps, include all those as well.

The most common food intolerances are dairy, gluten, soy, and corn. If nothing showed up on skin prick tests/scratch tests, then it is likely that it is intolerances, as opposed to allergies. Often if you take out the foods that are bothering them, their appetite increases and they eat more once they realize that eating doesn't cause discomfort. Also, if sleep is affected, then once they start sleeping, they often start growing (my kids had huge growth spurts after going off their trigger foods.

We did elimination diets, and we did ALCAT testing (www.alcat.com, it was not covered by insurance and I think it was about $400 per child when we did it, 150 foods).

Zinc jumped out at me as well (with the picking, etc.).

 

[tanyalynn]

I'll say up-front, a lot of what you wrote is beyond me, so I'll share my thoughts and you can fit them in as seems appropriate.

A lot of the symptoms you mentioned do seem like food intolerances to me. Have you ever read much about gluten? It really does strange things to even healthy digestive tracts, I tend to think that anyone with significant digestive issues or long-standing health issues that aren't resolving by other means should seriously consider cutting out gluten. Dairy and soy are fairly cross-reactive and in some people casein and gluten do funky, similar things. You may be able to identify other things more clearly after gluten and dairy are out of his system.

In terms of exploring toxic metals, take a look at the 2nd post on this page.

http://mothering.com/discussions/sho...lating&page=30

My kids and are in this forum because of the mercury in my amalgam fillings. It's not everyone's issue, but since it's treatable, I think it's worth exploring. Plus other metals--lead, arsenic, people who are having atypical health issues should consider that they somehow encountered something that other people didn't, sometimes they can't figure out the original source, but if it's long-gone, who cares.

Have you considered cranial-sacral therapy? I've read of it helping with reflux and gag reflexes in babies/toddlers, it seems worth exploring in your situation. I think it's good for general health support regardless, but that comes down to finding a HCP and finding the funds.

If you just cut out gluten and dairy, I'd focus on fatty foods and calcium sources. We do a mix of foods and supplements.

I have found that it's much easier to understand our situation if I combine my health and my kids' symptoms. Their health issues are manifestations of our common problem. My nutrient deficiencies are theirs.

You asked about probiotics in your other thread. We're just doing foods, I make kimchee that's really tasty. It's cheap and easy, but it's not enough for everyone.