RE: Question about mito characteristics?

[Guest guest]

Have you looked at www.umdf.org?

[Guest guest]

Have you looked at www.umdf.org?

[Guest guest]

My daughter is 2 with mito. She also has had serious liver problems, wich eventually led to her mito diagnosis. Seizures are also very common with mito, however not all kids with mito have siezures (mine does not.) Also, many kids with mito are underweight, many are not. Grace did loose alot of weight until she started the cocktail and got under control. Now she is in about the 75th percentile for height and weight.

Best wishes

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[Guest guest]

My daughter is 2 with mito. She also has had serious liver problems, wich eventually led to her mito diagnosis. Seizures are also very common with mito, however not all kids with mito have siezures (mine does not.) Also, many kids with mito are underweight, many are not. Grace did loose alot of weight until she started the cocktail and got under control. Now she is in about the 75th percentile for height and weight.

Best wishes

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[Guest guest]

,

Your son's first seizure sounds so much like my daughter's first. She was 7

1/2 months, woke up from a nap completely limp.

By the time we got her to the hospital she was in respiratory failure. She

was fine before this, on target with developmental

issues, no warning signs, except with her she would always get sicker than

everone else, if there was a bug or cold going around

she got it. Her seizure activity comes from her right hemisphere also, only

she is very tiny for her age. The docs were stumped,

it took 1 1/2 years for a diognosis, even though the neuro at the time

started testing for mito way before that. They did the pyruvate/

lactic acid (not sure if spelled right) levels while she was healthy,

nothing showed up off enough to make sense. They finally did these

levels while she was in the hospital from another major seizure episode,

her body was still fighting off the strep that put her in trouble.

When they finally checked it during an infection they got the results they

were looking for! If they test her while she has an infection a

lot of her labs are off, but mostly the pyruvate/ lactic acid and the

ratio of them. I don't know if this helps, I hope so. I saw how your

son's seizure was and it sounded all too familiar, and that was what

really stumped them, it didn't fit into the " normal " seizure disorder,

they actually told us they were stumped, until the results came in while

she was sick. He even asked me if I was sure she was awake

and not sleeping with her eyes open! I was holding her when she went into

it, the limpness really threw him too.

Good luck!!

Lois

> [Original Message]

>

> To: <Mito >

> Date: 2/14/2005 3:42:32 PM

> Subject: Question about mito characteristics?

>

>

>

> I have three children. Two of which are 4 year old twins. These two

have been diagnosed with autism. I have one 16 mo old who has been

diagnosed with developmental delay and possible mitrochondrial disorder

from the neurologists. Otherwise appeared healthy, good weight gain, and

woke up one morning approx 2 months ago totally flacid, unresponsive.

After going to the hospital, we learned he had a seizure, affecting his

right hemisphere, and ox was 88 and +3 keytones in his urine. He had

elevelated ALT's in his liver. Since then, he has only had one minor

seizure and has started on anti-convulsants. His liver levels have stayed

elevated, however.

>

> I am getting confusing results from the doctors, they are saying some of

his charactistics are like that of mito, howevr, his 35+pounds of weight at

16mo. is not charactistic.

>

> What have you all experienced with this and is this charactistic of the

disorder? I am very new to all of this information!

>

> Thanks,

>

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

>