Does this sound familiar?

[Guest guest]

Just weighing in with my $0.02. The symptoms you described were very similar to what my daughter showed as a newborn/infant: ptosis of the eyes, reflux, poor/no weight gain, low muscle tine, poor suck/swallow/breathe synchrony, etc. She didn't have the diarrhea issue, but the opposite with cyclical constipation (still fighting that to this day). She is now 7, and we are working on a diagnosis of PDH as well, although it;'s only been confirmed through blood tests, not thru the skin biopsy.

Hope this helps a little.

ruth

mom to Mitch (10) and Lexi (7), both mito affected and my treasures

[Guest guest]

Well,

My Paris, my 3 month old, is still having problems and we are still

waiting for tests and results. My 2 1/2 yr old has PDH, we suspect

Paris has it too. She has been hospitalized twice for apnea due to

RSV, pneumonia with a fever, and reflux that aspirates. She now has

had constant diarrhea with every feeding for 6 days. At first I

thought it was a milk allergy, but I switched her to Soy the first

day of it. She still is having apnea from the reflux from what I can

tell to. She has low muscle tone, half the time doesn't feed well as

far as sucking strength, and she hasn't gained an ounce for 2 weeks.

Her head circumfrance has skipped down a percentile, with my Ellie

her head was too BIG. Her eyelids are sagging too. It just seems

like she has never been well, even though I keep her isolated as

possible. She had an elevated lactic acid level in the hospital, we

took it Friday and it was normal, but still do not have the Pyruvate

level back yet. Ellie's levels are almost always normal no matter

how well she's doing, so it really doesn't put my mind at ease. Are

these things that are common in a mito baby, or could it all be

cooincidence? I guess I know the answer is yes to both, but would

appreciate any input.

Thank you,

[Guest guest]

Just out of curiousity, have they started treating the reflux? Leighann had

a lot of apneas

from the reflux, as soon as they got the reflux under control, the apneas

improved

a lot, it was almost like magic. The reflux does still come up at times,

but he'll adjust the

dosage on her zantac and it really seems to help. I can't really help with

the other

issues, we're still trying to figure out a lot of other things too. I wish

you the best of

luck, it's hard to deal with so much with our babies.

Lois

> [Original Message]

>

> To: <Mito >

> Date: 4/17/2005 11:33:00 AM

> Subject: Does this sound familiar?

>

>

>

> Well,

> My Paris, my 3 month old, is still having problems and we are still

> waiting for tests and results. My 2 1/2 yr old has PDH, we suspect

> Paris has it too. She has been hospitalized twice for apnea due to

> RSV, pneumonia with a fever, and reflux that aspirates. She now has

> had constant diarrhea with every feeding for 6 days. At first I

> thought it was a milk allergy, but I switched her to Soy the first

> day of it. She still is having apnea from the reflux from what I can

> tell to. She has low muscle tone, half the time doesn't feed well as

> far as sucking strength, and she hasn't gained an ounce for 2 weeks.

> Her head circumfrance has skipped down a percentile, with my Ellie

> her head was too BIG. Her eyelids are sagging too. It just seems

> like she has never been well, even though I keep her isolated as

> possible. She had an elevated lactic acid level in the hospital, we

> took it Friday and it was normal, but still do not have the Pyruvate

> level back yet. Ellie's levels are almost always normal no matter

> how well she's doing, so it really doesn't put my mind at ease. Are

> these things that are common in a mito baby, or could it all be

> cooincidence? I guess I know the answer is yes to both, but would

> appreciate any input.

> Thank you,

>

>

>

>

>

>

> Please contact mito-owner with any problems or questions.

>