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Re: Kaelyn's lab results

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Sorry I really can't help on the labs. But, you asked if any other child has mild symptoms and diagnosed with mito. My daughter fits that pretty well. However, before she was on her medicine she did have a lot more symptoms. Gracie is 21months old. She "looks" completely normal. She plays with other children, runs, jumps (not very well yet) and has a smile that turns heads. She has her issues but she is doing so well, we take the good with the bad. Her only noticeable problem is her speech. She really can't talk yet. She does have a few words Mommy, Da (daddy), and Hot (we don't know why she loves this word). She is presently learning sign language to help her communicate. This is working pretty good, but lately she is refusing to sign (power struggle).

As far as medically speaking she is doing much better. Her liver does have permanent damage done, due to mito (before meds). And she is completely dependent on medication. We know she will never be able to get off the meds. Although her asthma is pretty in control right now so we don't have to use those as much. I will give you a list of meds, just in case you want to compare. She has had a G tube placed for medication. This was only done because she was refusing to eat, because everything had medicine in it. Now we have no problems with medication, and actually have noticed them working better.

Carnitor

CoQ10

Actigal (liver med)

Clarinex

Poly Vi Sol

Cornstarch (for hypoglycemia)

Pulmicort

Albuteral

MCT Oil (when weight gain is slow)

Elidel

I hope this is some help for you. I know the meds are long, but if you saw her play you would understand how well she is.

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