's intro

[Guest guest]

Hi, my name is Heidi and my daughter is 15 1/2 months old.

was a preemie due to a malformed placenta and things have

just gotten more interesting sice then. I'm not quite sure what to

write to tell you what's going on with . The VNA lady asked

me what her primary diagnosis was and I had no clue what to say. She

just had bloodwork and a skin biopsy for metabolic stuff and mito,

but no diagnosis yet. She has terrible GI problems and has a G-J

tube with the g tube to drainage and the j tube for tiny feeds of

neocate. She has a broviac and gets TPN 20 hours a day. She has

neuro involvement with seizures, dystonia, delays, and autonomic

disregulation. She has some kind of renal involvement, possibly

RTA. She has lung issues and is on a monitor at night. So, what's

the main problem? I guess it's that 's body just doesn't work

the way she wants it to. She is a bright, happy, wonderful toddler

who wants to get into things and explore like other kids her age.

I've gotten over the fact that may not ever be 'typical' but

I just want to keep her feeling good. The TPN has worked wonders.

She's trying to move around by wiggling and scooting, and I wouldn't

dare leave her on the bed now. She used to be so wiped out by any

movement that she had to take a nap after laughing and playing peek-a-

boo. Now, it's a 40 minute nap maybe twice a day!

I'm looking forward to talking to folks who have the same

experiences. We've met up with some great families at the hospital,

and it was nice to talk to people with similar issues at home. Nice

change from the typical playgroup scene where I have to spend too

much time explaining everything and not have anything really current

to talk about.

Thanks!

Heidi, 's mom

[Guest guest]

First of all welcome to the group. This is a wonderful place to come to "chat" with people with similar situations. Everybody here is full of great information, and support. I have to admit, almost everything I have learned about mito comes from this group. Your daughter sounds alot like many children in this group. If your child does test positive, that will explain why she has so many different problems. Mito affects your entire body. With my daughter Grace, 19 months, her liver, lungs, GI system are all affected. We are awaiting her appt with her Neuro to confirm seizures. We also did the Neocate, don't you love it, ha ha. I think we could have went on vacation from the cost of it. Does your daughter have a mito doctor yet? If so who? Most of the people here go to either the Mayo Clinic or Cleveland Clinic. My daughter sees Dr. Cohen at the Cleveland Clinic. Please feel free to ask any questions you have. I can almost guarantee someone will have some advise, if not an answer.