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 there and welcome!!

Wish you didn't need to join us here but am very glad you were able

to find us so quickly. There is an incredible wealth of information

here and alot of very supportive, understanding people that will help you

regain your footing.

The good news about getting a diagnosis so soon is that you have the

chance to start treatment and begin avoiding stressors to his system very

early in the course of things. While there are no guarantee's that

this will make a difference, there is more and more information out there

indicating that with early diagnosis and treatment in these children, the

prognosis can be improved. Ultimatly, prognosis and what the future

will bring is impossible to say and is so so very variable even with kids

that have the same defect, but knowing sooner rather than later has its

good sides.

My Madison was similar in symptomology early on, and while she was delayed

developmentally, she continually made gains for a long time. It really

was not till she was 4 that we saw any indications that there might be

something more "sinister" going on. Additionally, while she was as

much as 50% delayed developmentally before starting the supplements, within

6 months time of starting them she made incredible gains in this area,

so by starting so early, you may well assist him in making considerable

gains early on.

While no one wants this diagnosis for their child, you all truly have

alot going for you right now.....you KNOW what the problem is and can address

it more directly.....you can start supplements and monitoring his condition

very early on.....you can be proactive in avoiding stressors to his system

that could cause more problems.....and you can concentrate on helping him,

rather than on the search for answers. Its still an emotional roller

coaster and you'll need all the support you can get, but thats what we're

here for :-)

As for there being any chance that the results are inaccurate, realistically

there is always a chance of a false positive, however they seem to have

done what they could to try and confirm the results. certainly

has symptoms that would go along with mito, at this point mild which I

know your grateful for, but I'd think there is sufficient reason to assume

the results are accurate.

Welcome again and know we're all here to help and support you all now

and in the future.

-- BIG hugs,

Kass, proud mom to Chance(10-Mito), Madison(7-Mito),

and Abby(6-Mito)

Updates (http://www.caringbridge.org/tx/mitowhat/)

"Life is not measured by the breaths we take, but by the moments

that take our breath away" Unknown

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 there and welcome!!

Wish you didn't need to join us here but am very glad you were able

to find us so quickly. There is an incredible wealth of information

here and alot of very supportive, understanding people that will help you

regain your footing.

The good news about getting a diagnosis so soon is that you have the

chance to start treatment and begin avoiding stressors to his system very

early in the course of things. While there are no guarantee's that

this will make a difference, there is more and more information out there

indicating that with early diagnosis and treatment in these children, the

prognosis can be improved. Ultimatly, prognosis and what the future

will bring is impossible to say and is so so very variable even with kids

that have the same defect, but knowing sooner rather than later has its

good sides.

My Madison was similar in symptomology early on, and while she was delayed

developmentally, she continually made gains for a long time. It really

was not till she was 4 that we saw any indications that there might be

something more "sinister" going on. Additionally, while she was as

much as 50% delayed developmentally before starting the supplements, within

6 months time of starting them she made incredible gains in this area,

so by starting so early, you may well assist him in making considerable

gains early on.

While no one wants this diagnosis for their child, you all truly have

alot going for you right now.....you KNOW what the problem is and can address

it more directly.....you can start supplements and monitoring his condition

very early on.....you can be proactive in avoiding stressors to his system

that could cause more problems.....and you can concentrate on helping him,

rather than on the search for answers. Its still an emotional roller

coaster and you'll need all the support you can get, but thats what we're

here for :-)

As for there being any chance that the results are inaccurate, realistically

there is always a chance of a false positive, however they seem to have

done what they could to try and confirm the results. certainly

has symptoms that would go along with mito, at this point mild which I

know your grateful for, but I'd think there is sufficient reason to assume

the results are accurate.

Welcome again and know we're all here to help and support you all now

and in the future.

-- BIG hugs,

Kass, proud mom to Chance(10-Mito), Madison(7-Mito),

and Abby(6-Mito)

Updates (http://www.caringbridge.org/tx/mitowhat/)

"Life is not measured by the breaths we take, but by the moments

that take our breath away" Unknown

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 there and welcome!!

Wish you didn't need to join us here but am very glad you were able

to find us so quickly. There is an incredible wealth of information

here and alot of very supportive, understanding people that will help you

regain your footing.

The good news about getting a diagnosis so soon is that you have the

chance to start treatment and begin avoiding stressors to his system very

early in the course of things. While there are no guarantee's that

this will make a difference, there is more and more information out there

indicating that with early diagnosis and treatment in these children, the

prognosis can be improved. Ultimatly, prognosis and what the future

will bring is impossible to say and is so so very variable even with kids

that have the same defect, but knowing sooner rather than later has its

good sides.

My Madison was similar in symptomology early on, and while she was delayed

developmentally, she continually made gains for a long time. It really

was not till she was 4 that we saw any indications that there might be

something more "sinister" going on. Additionally, while she was as

much as 50% delayed developmentally before starting the supplements, within

6 months time of starting them she made incredible gains in this area,

so by starting so early, you may well assist him in making considerable

gains early on.

While no one wants this diagnosis for their child, you all truly have

alot going for you right now.....you KNOW what the problem is and can address

it more directly.....you can start supplements and monitoring his condition

very early on.....you can be proactive in avoiding stressors to his system

that could cause more problems.....and you can concentrate on helping him,

rather than on the search for answers. Its still an emotional roller

coaster and you'll need all the support you can get, but thats what we're

here for :-)

As for there being any chance that the results are inaccurate, realistically

there is always a chance of a false positive, however they seem to have

done what they could to try and confirm the results. certainly

has symptoms that would go along with mito, at this point mild which I

know your grateful for, but I'd think there is sufficient reason to assume

the results are accurate.

Welcome again and know we're all here to help and support you all now

and in the future.

-- BIG hugs,

Kass, proud mom to Chance(10-Mito), Madison(7-Mito),

and Abby(6-Mito)

Updates (http://www.caringbridge.org/tx/mitowhat/)

"Life is not measured by the breaths we take, but by the moments

that take our breath away" Unknown

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]

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]

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]

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....