New to the group and the diagnosis

February 17, 2004

Hello, I have been reading everything that has been posted but have

yet to post. I have two sons that have been diagnosised with

probable Mito by muscle byopsy but don't have a specific type. We

have been through four years of heck, but it sounds like everyone

goes through this. We live in the Kansas City area and have only one

doctor who really gives us any info about the Mito and really it is

all overwhelming to us. I have so many questions I don't even know

where to start to I will introduce my sons.

Gavin age four- Mito, PDD, Asthma, history of epilepsy which started

at 4 months and ended about 8 months ago and is nolonger on meds,

dosn't sweat, low tone, temerature intolerance, small head(can't

remember the long term) that is getting worse, developmental delays,

processing and motorplanning problems, and he has weird fatigue and

overall weakness with illness, weather changes, allergies, normal

play, and emotional stress. Gavin looks pretty normal and seems like

a healthy kid so we gat a lot of questions about his need for a

wheelchair or why we put limitations on his playtime. He does seem

to be responding a little to CoQ10.

Gage age 2(turning 3 this month)-Mito, EG(eosinaphilic

gastroenteritis) EE&EC, Lung disease with episodes of oxygen hunger,

was a floppy baby(didn't hold his head up till he was 5 months old,

Autism (doing great with speech but still has big isusses with

behaviors and social), Swallowing problems, Excessive sweating,

temperture intolerances, slightly abnormal ERG, abnormal EEG, 2

seizures, abnormal immune system(still going through testing), slight

kidney reflux, low tone, G-tube, milk-soy-seasonal-food coloring-corn-

and who knows allergies. Gage has had over 26 hospital stays for

feeding intolerance, asthma, common viruses or infection, FTT, and

reasons that never got figured out, he also seems just fine to most

he walks, talks, runs, but gets very sick and takes months to get

over th common cold. Taking COQ10 and not seeing any results, but he

has been sick for 3 months straight.

So I guess I am looking for a good Mito doctor who can lead us in the

right direction, answer questions, and not make me feel insane. We

are tired of doctors and hospitals even after we got the diagnosis

doctors still don't believe that is the answer they feel the kids are

doing too well and that they would not make any improvements and that

we would more then likely have seen regression. We are just so

tired!! Thank you for taking the time to read this it sounds like

everyone has their hands full! Crystal mommy to Gavin and Gage.

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