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]

Hi:

My daughter, Leah, will be6 years old at the end of this month. She can

now finally sit up for about 5 minutes on her own. She rolls to get

everywhere. If memory serves me right; Leah didn't have high lactic or

pyruvate levels either. Slightly elevated. Her cells are still being

tested. She is suspected of Complex I but never fully confirmed. It

took her a long time for head control. She still has difficulty with it

at times; especially if she is getting tired or ill. That is a sign at

school when they bring up about her head control and she seemed more

tired. Leah still feeds orally. She has made good gains this past

year. Slow weight gain. Her doctor isn't too concerned about her

weight gain yet. Each child can be different with mito. In this group

alone there are many varieties of how children respond to therapies,

supplements, medicines; and even symptoms. We compare our children and

their differences and similiarities, too. Welcome to the group. As

every one says, we don't want to be here; but it's great that there is

this group and you don't feel so alone in this world battling this

disease and a few of the " professionals " out there. We learn, we grow,

we cry, we cheer, and we laugh in this group.

Nerenhausen

mom to Leah

whitneywg wrote:

>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....

>

>

>

>

>

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

>

[Guest guest]

Hi:

My daughter, Leah, will be6 years old at the end of this month. She can

now finally sit up for about 5 minutes on her own. She rolls to get

everywhere. If memory serves me right; Leah didn't have high lactic or

pyruvate levels either. Slightly elevated. Her cells are still being

tested. She is suspected of Complex I but never fully confirmed. It

took her a long time for head control. She still has difficulty with it

at times; especially if she is getting tired or ill. That is a sign at

school when they bring up about her head control and she seemed more

tired. Leah still feeds orally. She has made good gains this past

year. Slow weight gain. Her doctor isn't too concerned about her

weight gain yet. Each child can be different with mito. In this group

alone there are many varieties of how children respond to therapies,

supplements, medicines; and even symptoms. We compare our children and

their differences and similiarities, too. Welcome to the group. As

every one says, we don't want to be here; but it's great that there is

this group and you don't feel so alone in this world battling this

disease and a few of the " professionals " out there. We learn, we grow,

we cry, we cheer, and we laugh in this group.

Nerenhausen

mom to Leah

whitneywg wrote:

>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....

>

>

>

>

>

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

>

[Guest guest]

Hi:

My daughter, Leah, will be6 years old at the end of this month. She can

now finally sit up for about 5 minutes on her own. She rolls to get

everywhere. If memory serves me right; Leah didn't have high lactic or

pyruvate levels either. Slightly elevated. Her cells are still being

tested. She is suspected of Complex I but never fully confirmed. It

took her a long time for head control. She still has difficulty with it

at times; especially if she is getting tired or ill. That is a sign at

school when they bring up about her head control and she seemed more

tired. Leah still feeds orally. She has made good gains this past

year. Slow weight gain. Her doctor isn't too concerned about her

weight gain yet. Each child can be different with mito. In this group

alone there are many varieties of how children respond to therapies,

supplements, medicines; and even symptoms. We compare our children and

their differences and similiarities, too. Welcome to the group. As

every one says, we don't want to be here; but it's great that there is

this group and you don't feel so alone in this world battling this

disease and a few of the " professionals " out there. We learn, we grow,

we cry, we cheer, and we laugh in this group.

Nerenhausen

mom to Leah

whitneywg wrote:

>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....

>

>

>

>

>

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

>

[Guest guest]

Whitney, I wanted to welcome you and let you know that I have a son

who is also Complex I. Wyatt is 5 and is also g-tube fed. We did

not receive a diagnosis until last year and that was done with a

skin biopsy. He also did not fit the profile of a mitochondrial

child. As a matter of fact when our geneticist first read Wyatt's

file he thought he was a brain injured child from birth. We did not

start to go down the path of mito disorder until he was sick and his

lactic acid levels started to rise. I would agree with Kass 100%.

Each child is different, each child responds to treatment

differently, but the one thing you do have going for you is an early

diagnosis. I have seen a slight improvement in Wyatt since we

started the mito cocktail and put in the g-tube, but we didn't start

until age 4 1/2. I personally believe that those who start the mito

cocktail early in life respond better. I don't think there is any

document out there that states that but it is just an observation I

have made since being a part of this group. So welcome and if you

have any questions feel free to ask.

Geri-Anne, , Wyatt, complex I, and Dina and Bianca, 3 year old

twins that stress me out completely. Wyatt is my easy child!!!!-

-- In Mito , " whitneywg " wrote:

> 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.

[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.