Do any Mito moms want to tell me more?

[mountainsunshine]

I read here once some info about Mito disease that somehow struck a chord with me. Here's whats running through my head:

I have 2 kiddos DX as on the autism spectrum- specifcally asperger's and Pdd-nos (althogh I wouldn't be suprised if shes an aspie also).

My aspie has some food intolerences and is on "The diet" - Gf/CF/SF chemical free. Shoot! i just make it all from scratch and sub all the ingredients lol.
My Pddd-nos DD has some bouts of constipation that can get bad and the diet also seemed to help that.

Baby girl is 2yo and is not DX. She has had a severe speech delay and sensory issues, bowel problems and food intolerences we can't seem to get a grip on. We put her on GF/CF/SF ect ect diet that dd is on and wham! in a matter of weeks she begins to talk and imitate ect ect. she is catching up quickly in some areas now. She is not at all following the usual pattern for learning to speak, but she's making progress. She had an endoscopy that showed damage and it is suggested she stay GF and also see an allergist. Meantime she is on Prilosec to help with her tummy troubles.

For some reason I keep coming back to that Mito post I read IDk how many years ago becuase I have more than 1 spectrum kiddo and becuase of all the tummy troubles in this house. Any Mito moms want to weigh in? any advise?

I hear there is a DR in Philly at CHOP that is doing studies on Mito kids and will do testing. Anyone have more info on that?
TIA
sarah

[Hopesmommy]

We are unsure if my son has Mito, or has mitochondrial dysfunction secondary to another disease. At any rate, it is imperative that if you suspect mito you should see a doc that specializes in it. Anyone else is a waste of time.

I have heard that CHOP does have mito specialists, but I know nothing about them. We are in TX and have a great doctor an hour away from us.

I can't tell you if your dc have mito or not, but if you think it's a possibility then you should definitely have it checked out.

[sbgrace]

Mito generally has three different body systems affected. Is this the thread you saw? I listed the affected areas. Are the kids low muscle tone? You are right that GI and brain are often affected. Autism dx. is common. I'm wondering though about the scope showing the damage--are they thinking EOS type disease or they saw celiac?

I agree that for mito you must go to someone who knows it well to get an accurate assessment.

[my3peanuts]

GI issues and autism are closely related and don't necessarily indicate mito. Of course they can but nothing is screaming mito to me. That doesn't mean it might not be either. Testing is not a simple process and is often lengthy and invasive so seeing a doctor that specializes in mito is a good idea.

[MotherWhimsey]

Yeh, those are common enough issues that they don't really scream mito. I mean, it could be, but nothing that makes my mito radar ping.

You could ask your ped if he'd be willing to do a series of metabolic labs. Do one well as a baseline, one fasting, and one sick (fever over 101.5). This is probably the easiest place to start, but then again, drawing labs isn't fun.