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Discussion Starter · #1 ·
Where do I start? Is there a site or book to help me understand enough to know if this is a path I truly need to investigate?

In short: ds was dx'd with profound delays around 8mo and we found that he responded significantly to the removal of gluten (which constipated him almost to the point of inpatient feeding therapy), dairy, soy and corn. Then again to fish oil (an omega 3-6-9 mix).

He's gone from suspicion of cerebral palsy with an atypical general epilepsy dx through the autism spectrum to where he is today: a feeble looking but exceptionally bright 5yo with some gifts and some issues (OT, auditory processing). Recently his OT eval noted a lot of gross motor issues and really, except for a half-hour swim lesson each week and a 1-2 hour playground visit once/week with a homeschool group, we're not a very physical bunch. He does still nap on occasion, but without his fish oil his sleep patterns are completely hosed (and he doesn't really sleep at ALL).

He actually eats really well and has overcome a lot of texture aversions. I just feel like something else is going on that I'm not seeing and I want to rule it all out. He seems to respond so significantly to what's ingested I just thought maybe this is the road I should look down.

Thoughts?
 

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You may have seen this link before but I put together a list of signs a child might have a metabolic condition. http://www.mothering.com/discussions...d.php?t=734501

If a child has signs and you decide to pursue it you would then see someone for testing. For general metabolic conditions the testing is relatively straight forward (this indicates that possibility and you find out if it's that with this test). When you get into the mitochondrial area it's not so simple and you really have to see someone who knows mito. And there aren't many. The same is likely true of other complex/rare disorders. But if there are signs anyone could run basic metabolic labs for you and see if they catch anything. Basic labs would be include the ones listed under metabolic screening in blood and urine on this site. http://www.umdf.org/site/c.dnJEKLNqF.../Diagnosis.htm They recommending fasting labs at both centers we saw.
Whether wise or not I wouldn't have put my kiddo through all that if he hadn't been declining.
 

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Discussion Starter · #3 ·
Okay... he's not declining except in gross motor. He does fall into that list with 3 areas affected. And he has incredibly low tone. In fact, one doctor used a medical term that when I looked it up it described my son as "wasting away". And he's incredibly pale (but I always blew this off to blond hair, blue eyes and generally "light").

I don't know. I'm kind of thinking: what would I be getting out of this if I do it? By the same token, he looks sickly and his gross motor skills aren't good (in addition to the other problems). I wonder if those would resolve.

Thanks. Maybe I'll just watch him a little more closely for a while.
 
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