New here, baby boy just diagnosed Complex I

[Guest guest]

Hi,

After batteries of tests since his birth, my 6 month old finally got

a diagnosis of mitochondrial disorder, deficient in Complex I. He

was born with hypotonia, poor feeding, GI reflux, and a high

respiratory rate. He had a G-tube placed at 4 months for failure to

thrive (he takes about 20% of his food by mouth, the rest through the

tube). He seemed to really improve after the G-tube and began

holding his head up and his lethargy decreased.

When they placed the G-tube they did a muscle biopsy. I was told

Friday that the tests showed he was deficient in Complex I. The test

was run twice to confirm the deficiency. My son's neurologist thinks

he doesn't fit the profile of a mitochondrial disorder and that it

might be a secondary symptom of something else. Obviously, we don't

want him to have ANYTHING, but I was at least glad to have a

diagnosis.

Also, has improved a lot since his G-tube, and has better head

control (still not 100%) and is very responsive. He has never had

high lactate or pyruvate levels. He does not roll or sit up, and he

is 6.5 months old. Does anyone have a child diagnosed with Complex I

who is doing (knock on wood) well? Everyone seems pleased with his

progress and surprised about the mitochondrial test results because

he is not losing ground or degenerating. Others say that there just

isn't enough knowledge out there to chart the course of mitochondrial

disease. Will he get worse one day? Is it possible this is the

wrong diagnosis? I would love to hear from you! We are trying to

get our footing in this strange new world....

[Guest guest]

Kass,

Thank you for your kind welcome and encouraging words. I take to

heart many of the things you said regarding the early diagnosis and

the fact that we can help now. When was your Madison

diagnosed? How is she doing now? Can I ask what her symptoms were as

an infant? is developmentally delayed, but he isn't too far

behind. If he hadn't had the high respiratory rate and the failure

to thrive, I don't think our pediatrician would have been as

concerned. Am thrilled to hear the supplements made such a

difference for your little one--

Thanks,

Whitney

>

> > Hi,

> > After batteries of tests since his birth, my 6 month old finally

got

> > a diagnosis of mitochondrial disorder, deficient in Complex I. He

> > was born with hypotonia, poor feeding, GI reflux, and a high

> > respiratory rate. He had a G-tube placed at 4 months for failure

to

> > thrive (he takes about 20% of his food by mouth, the rest through

the

> > tube). He seemed to really improve after the G-tube and began

> > holding his head up and his lethargy decreased.

> >

> > When they placed the G-tube they did a muscle biopsy. I was told

> > Friday that the tests showed he was deficient in Complex I. The

test

> > was run twice to confirm the deficiency. My son's neurologist

thinks

> > he doesn't fit the profile of a mitochondrial disorder and that it

> > might be a secondary symptom of something else. Obviously, we

don't

> > want him to have ANYTHING, but I was at least glad to have a

> > diagnosis.

> >

> > Also, has improved a lot since his G-tube, and has better

head

> > control (still not 100%) and is very responsive. He has never had

> > high lactate or pyruvate levels. He does not roll or sit up, and

he

> > is 6.5 months old. Does anyone have a child diagnosed with

Complex I

> > who is doing (knock on wood) well? Everyone seems pleased with

his

> > progress and surprised about the mitochondrial test results

because

> > he is not losing ground or degenerating. Others say that there

just

> > isn't enough knowledge out there to chart the course of

mitochondrial

> > disease. Will he get worse one day? Is it possible this is the

> > wrong diagnosis? I would love to hear from you! We are trying to

> > get our footing in this strange new world....

[Guest guest]

Hi,

My has Complex 1 also she is 3.5 yrs old and sometimes she has he bad

times but God has definaltey blessed us with some good times. SHe wakes up

everymorning now saying that she is Happy today...you cant imagine what that

does to me. I am a big huge sucker for her and she knows it too. SO even

though there are times that I cry so much cause I dont understand I try and just

take the days as they come and thank god for all of them.

I also thank god for these amazing people who I can write to and cry to whenever

I need to there are so many of us it seems so sometimes not all questions go

answered but I know that we are all praying for each other.

God bless and we are always here,

diana mother to nicole kelli complex 1 3.5 years old going on 16 years old

sometimes.