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]

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)