Biopsy results, we have a diagnosis!

[Guest guest]

is 2, and has a Complex 1 Deficiency...

I dont have to explain what it all means to any of you, but to say

the least im actually relieved to have an answer and a plan.

He will be starting on the cocktail next week, and our doctor is in

the process of writing an ER protocol for us.

its been a long year, but its nice to have some answers.

Keely

[Guest guest]

is 2, and has a Complex 1 Deficiency...

I dont have to explain what it all means to any of you, but to say

the least im actually relieved to have an answer and a plan.

He will be starting on the cocktail next week, and our doctor is in

the process of writing an ER protocol for us.

its been a long year, but its nice to have some answers.

Keely

[Guest guest]

Keely,

I'm new to the group and though I don't understand all of the meanings, I do appreciate the relief and glad for plans and protocol.

After 7 months of Chloe making 2-4 trips a month to the ER and medication adjustments with no real help or answers, I am hoping we will hear something in the next few weeks on her biopsy results and also develop a plan. Today they are doing an MRI and this last Tuesday they did her video EEG, last week her muscle biopsy.

Bless you and all of our children and parents.

Omailikemonstertrucks wrote:

is 2, and has a Complex 1 Deficiency...I dont have to explain what it all means to any of you, but to say the least im actually relieved to have an answer and a plan.He will be starting on the cocktail next week, and our doctor is in the process of writing an ER protocol for us. its been a long year, but its nice to have some answers. KeelyPlease contact mito-owner with any problems or questions.

[Guest guest]

Keely,

I'm new to the group and though I don't understand all of the meanings, I do appreciate the relief and glad for plans and protocol.

After 7 months of Chloe making 2-4 trips a month to the ER and medication adjustments with no real help or answers, I am hoping we will hear something in the next few weeks on her biopsy results and also develop a plan. Today they are doing an MRI and this last Tuesday they did her video EEG, last week her muscle biopsy.

Bless you and all of our children and parents.

Omailikemonstertrucks wrote:

is 2, and has a Complex 1 Deficiency...I dont have to explain what it all means to any of you, but to say the least im actually relieved to have an answer and a plan.He will be starting on the cocktail next week, and our doctor is in the process of writing an ER protocol for us. its been a long year, but its nice to have some answers. KeelyPlease contact mito-owner with any problems or questions.

[Guest guest]

> Keely,

It sounds weird to say congratulations on a diagnoses of mito but

we all know that knowing means better treatment in the long run. I

am glad that he is starting the cocktail and hopefully that help him

improve or slow the disease process. Also it is great that you are

getting the Er letter...unfortunately it will probably come in handy!

Dawn

[Guest guest]

> Keely,

It sounds weird to say congratulations on a diagnoses of mito but

we all know that knowing means better treatment in the long run. I

am glad that he is starting the cocktail and hopefully that help him

improve or slow the disease process. Also it is great that you are

getting the Er letter...unfortunately it will probably come in handy!

Dawn

[Guest guest]

It does sound weird to congratulate someone on this diagnosis, but I know you are so relieved to have an answer and a plan, so Congratulations! Good luck!

Vicki ~ mom to Caden (15 mo) poss. mito

Biopsy results, we have a diagnosis!

is 2, and has a Complex 1 Deficiency...I dont have to explain what it all means to any of you, but to say the least im actually relieved to have an answer and a plan.He will be starting on the cocktail next week, and our doctor is in the process of writing an ER protocol for us. its been a long year, but its nice to have some answers. KeelyPlease contact mito-owner with any problems or questions.

[Guest guest]

It does sound weird to congratulate someone on this diagnosis, but I know you are so relieved to have an answer and a plan, so Congratulations! Good luck!

Vicki ~ mom to Caden (15 mo) poss. mito

Biopsy results, we have a diagnosis!

is 2, and has a Complex 1 Deficiency...I dont have to explain what it all means to any of you, but to say the least im actually relieved to have an answer and a plan.He will be starting on the cocktail next week, and our doctor is in the process of writing an ER protocol for us. its been a long year, but its nice to have some answers. KeelyPlease contact mito-owner with any problems or questions.

[Guest guest]

In the way most of us all can relate too, Congratulations. I remember feeling as you do when we finally recieved a diagnosis for Grace.

Best wishes, and prayers the cocktail works well.

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[Guest guest]

In the way most of us all can relate too, Congratulations. I remember feeling as you do when we finally recieved a diagnosis for Grace.

Best wishes, and prayers the cocktail works well.

Find files on your PC instantly with the new MSN Toolbar Suite beta – FREE!

[Guest guest]

I do feel wierd for being happy about this...

But with myself i spent the first 22 years of my life knowing

something was wrong, and being told something was wrong, but nobody

having a clue what it was or what to do about it.... i cringed at

the idea of my baby living the same life... at least with this

diagnosis we have a starting point and a name...

its strange that its such a relief, but i see it as an end to the

testing stage, which is wonderful.

>

[Guest guest]

I do feel wierd for being happy about this...

But with myself i spent the first 22 years of my life knowing

something was wrong, and being told something was wrong, but nobody

having a clue what it was or what to do about it.... i cringed at

the idea of my baby living the same life... at least with this

diagnosis we have a starting point and a name...

its strange that its such a relief, but i see it as an end to the

testing stage, which is wonderful.

>

[Guest guest]

I am happy you were able to get a specific form. It is so nice to know

exactly what is going on rather than having to guess. All but one of our

specialists believe Mito is the cause for our girls, but the one is really

causing it to be confusing to the hospital staff when the girls are

inpatient. We have to settle for assumed/unknown form of Mito. I hope your

diagnosis will help to better treat 's Mito.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

Biopsy results, we have a diagnosis!

>

>

> is 2, and has a Complex 1 Deficiency...

> I dont have to explain what it all means to any of you, but to say

> the least im actually relieved to have an answer and a plan.

> He will be starting on the cocktail next week, and our doctor is in

> the process of writing an ER protocol for us.

> its been a long year, but its nice to have some answers.

> Keely

>

>

>

>

>

>

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

>

[Guest guest]

I am happy you were able to get a specific form. It is so nice to know

exactly what is going on rather than having to guess. All but one of our

specialists believe Mito is the cause for our girls, but the one is really

causing it to be confusing to the hospital staff when the girls are

inpatient. We have to settle for assumed/unknown form of Mito. I hope your

diagnosis will help to better treat 's Mito.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

Biopsy results, we have a diagnosis!

>

>

> is 2, and has a Complex 1 Deficiency...

> I dont have to explain what it all means to any of you, but to say

> the least im actually relieved to have an answer and a plan.

> He will be starting on the cocktail next week, and our doctor is in

> the process of writing an ER protocol for us.

> its been a long year, but its nice to have some answers.

> Keely

>

>

>

>

>

>

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

>

[Guest guest]

Keely,

I'm glad the biopsy results gave you that much needed information. Wish it

weren't mito, ya know, but i always think it's better to have the diagnosis than

to wonder. YAY that he will be starting on the cocktail. I'll cross fingers

and toes and all else that it gives him good results.

ruth

[Guest guest]

Keely,

I'm glad the biopsy results gave you that much needed information. Wish it

weren't mito, ya know, but i always think it's better to have the diagnosis than

to wonder. YAY that he will be starting on the cocktail. I'll cross fingers

and toes and all else that it gives him good results.

ruth