What do you see in Infant with Mito?

[Guest guest]

Since we have been seeing quite a few issues with Zipporrah that are concerning us, I was wondering if you could tell me what issues you have seen in your infants other than abnormal blood work. What were they like and what did they deal with as infants? Darla: mommy to Asenath and the gangGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

darla,

with jess all we had in the beginning was intractable seizures, so she was on many meds and at high levels. developmental delay and feeding problems,not sleeping at all, ever, no speech either.at three she had her first function go, her swallow, then her bowels stopped working, her bladder, then her lungs, and so on. sorry i couldn't be of more help.

Michele mom to , 10 yrs old, mito- DNA deletion, intractable seizures, dysautonomia, MR., pdd, g-j tube, 02 dependent, BI-pap, ketogenic diet since 3/01, perm. foley cath for bladder dysfunction, heart rhythm drops during sleep. oh and lover of anything barbie, power puff girls, and loves to sing even if you can't understand the words.....lol

[Guest guest]

had a lot of problems after she was born about a month and half after she was born ... she showed colic symptoms she cried for 18 hours out of the day and she would arch her head back and her back was arched ...then she started not to eat at all.... she even stoped crying i almost lost her then but we took her to the uk hospital and they did all kinds of tests on her she 8.9 % of lactic acid in her body they say your only suppost to have 1% also she was haveing sezures with this but they was like a jerk like some one had scared her ... so they checked her for spinal merinjidice she did not have it so they keep checking for alot of things then they did a MRI on her body and found spots in her brain the deep part of her brian .. that told us she had swellin in the steam of her brain .. cutting off her ox... s disease moved rapildy on her she didnt even get a chance to try and fight it ...every thing just got worse on her ... her organs started shutting down and she passed six monthes after she we found out ... BUT LIKE I SAID EVERY ONE IS DIFFERANT WITH THIS CRAZY DISEASE.. good luck to you and i will be praying for you and your family ... stick togeather and cherish the time you have ... your friend shannon

Leighs disease

Nov. 07 2002

May 15, 2003

[Guest guest]

Hi Darla:

With Leah nothing started to show up until after an illness. She

was born a couple of weeks early; but I associated that with her being

in the breech position and me being small not much room to turn around

and so she decided to come early. All that showed up with her was

a partial cleft palate issue. But a couple of things that have come

up from memory is that she didn't like to lay on her stomach and hold her

head up. So she had low tone then; but I didn't know what low muscle

tone was at that time having two healthy average boys. Plus she was

having trouble with her eyes tracking. That is sort of what got the

ball rolling on things so to speak. But at that time the eye doctor

wanted to rule out a tumor causing her eyes not to track right and also

have us see a ped. neurologist. But it was our wonderful doctor who

was on top of things and when Leah became ill with a fever and seem to

be in pain after a couple of days of Leah not being comfortable is when

he ordered blood tests. So our signs were soft and sutle and we never

heard of mito. It's when do you think it isn't delayed development

in a child and when do you become concerned that "something" is going on.

I guess you need to trust your instincts on what is normal development

and what sends little shivers down your back as this isn't normal.

I know we look at our children more closely when we have a child affected

by mito because in reality I look at this disease as a sneaky disease because

it can show up at any point in a persons life. That is why we are

being cautious with our older sons issues. We aren't jumping the

gun and wanting to order all the tests; but we are taking it one step at

a time and ruling out certain things and taking it one day at a time.

If Dr. Whiteman wants to see your daughter that says a lot to me about

a doctor. That he trusts your instincts. Each child is different

with this disease and you are on top of the issues with all your children

and that is wonderful. With Leah we are still trying to figure out

stuff with her. Good luck and let us know how things are continuing

with your busy household.

Nerenhausen

mom to Leah

Darla Klein wrote:

Since we have been

seeing quite a few issues with Zipporrah that are concerning us, I was

wondering if you could tell me what issues you have seen in your infants

other than abnormal blood work. What were they like and what did

they deal with as infants? Darla: mommy to Asenath and the gang

Please contact mito-owner with any problems or questions.

[Guest guest]

Porrah (Pour-ah; her nickname) or Pooh-ah as the three young ones call her, is usually pretty happy when held but fusses easily when not held and hates being on her tummy as it makes her gag. She sleeps in my arms well but not well on her own. She seems to need lots of touching, which I don't mind as I love to cuddle too and there are plenty of us around to cuddle when I am unable to. Darla: mommy to Asenath and all the bunch Re: What do you see in Infant with Mito? Darla, Chelsea was very complacent and never cried. Because she was so happy, I never thopught anything of it. I recently have gotten Chelsea's medical file from her noe former neuro. Her ped WAS concerned about this when she was just a few months, but did not think it significant until she had weight loss and noticable hypotonia at 7 mos. She had a very subtle onset. e, Chelsea's mom (nonspecific mito)Please contact mito-owner with any problems or questions.