Re: Anne R-Future of Mito Kids

[Guest guest]

Shirley and Heidi,

That's what Dr. S. told me that there are types of mitochondrial disease that only manifest themselves in myopathies and that, although the kids with that type of disease will get more fatigue as they age, etc., there lives will not be shortened and there will not be cognitive disability. I hope this is true! Ash has the myopathy and GI issues as well as absent reflexes.

I'm going to ask this question to Dr. Boles - the specialist during the chat on Monday and see what he thinks. I also would like to read more and do a little research on the 'milder' mito disease - I hope it's true.

Anne R

Asher's mom

[Guest guest]

Hi,

I just read your post and was wondering, Dr. S says if the kids have a

myopathy, their life isn't shortened? My kids have a Mito Myopathy, and

appear to be doing very well considering. But I thought that even with

a myopathy the kids could deteriorate, possibly even die. No doctor

has told me anything, but I try to find information from this forum that

might help to answer questions.

Shirley, mom to and jordan

P.S. Do you know if the dysfunctional Mito can effect other parts, i.e.

the brain or heart, if the kids have a myopathy? One of my sons also

has GI problems-which I do too. My other son seems fine--as of now.

On Monday, January 19, 2004, at 03:57 PM, AReckling@... wrote:

> ,

>

> My son, Asher, almost 3, had a muscle biopsy done by shoffner in

> Atlanta last week. Dr. S. told us that there are a number of mito

> disorders that do not shorten life or cause cognitive disability. He

> told us that a number of mito disorders show up simply as myopathies

> (which is mostly what my son has, although he has GI issues as well).

>

> Anne R

>

> Please contact mito-owner with any problems or

> questions.

>

>

>

>

>

>

[Guest guest]

Hi,

I just read your post and was wondering, Dr. S says if the kids have a

myopathy, their life isn't shortened? My kids have a Mito Myopathy, and

appear to be doing very well considering. But I thought that even with

a myopathy the kids could deteriorate, possibly even die. No doctor

has told me anything, but I try to find information from this forum that

might help to answer questions.

Shirley, mom to and jordan

P.S. Do you know if the dysfunctional Mito can effect other parts, i.e.

the brain or heart, if the kids have a myopathy? One of my sons also

has GI problems-which I do too. My other son seems fine--as of now.

On Monday, January 19, 2004, at 03:57 PM, AReckling@... wrote:

> ,

>

> My son, Asher, almost 3, had a muscle biopsy done by shoffner in

> Atlanta last week. Dr. S. told us that there are a number of mito

> disorders that do not shorten life or cause cognitive disability. He

> told us that a number of mito disorders show up simply as myopathies

> (which is mostly what my son has, although he has GI issues as well).

>

> Anne R

>

> Please contact mito-owner with any problems or

> questions.

>

>

>

>

>

>

[Guest guest]

Hi,

I just read your post and was wondering, Dr. S says if the kids have a

myopathy, their life isn't shortened? My kids have a Mito Myopathy, and

appear to be doing very well considering. But I thought that even with

a myopathy the kids could deteriorate, possibly even die. No doctor

has told me anything, but I try to find information from this forum that

might help to answer questions.

Shirley, mom to and jordan

P.S. Do you know if the dysfunctional Mito can effect other parts, i.e.

the brain or heart, if the kids have a myopathy? One of my sons also

has GI problems-which I do too. My other son seems fine--as of now.

On Monday, January 19, 2004, at 03:57 PM, AReckling@... wrote:

> ,

>

> My son, Asher, almost 3, had a muscle biopsy done by shoffner in

> Atlanta last week. Dr. S. told us that there are a number of mito

> disorders that do not shorten life or cause cognitive disability. He

> told us that a number of mito disorders show up simply as myopathies

> (which is mostly what my son has, although he has GI issues as well).

>

> Anne R

>

> Please contact mito-owner with any problems or

> questions.

>

>

>

>

>

>

[Guest guest]

my daughter has been diagnosed with mitochondrial myopathy, she has issues

with her GI and there is no signs of the disease in her brain(on a MRI), but

she does have seizures.

Heidi Payton

--

[Guest guest]

my daughter has been diagnosed with mitochondrial myopathy, she has issues

with her GI and there is no signs of the disease in her brain(on a MRI), but

she does have seizures.

Heidi Payton

--

[Guest guest]

my daughter has been diagnosed with mitochondrial myopathy, she has issues

with her GI and there is no signs of the disease in her brain(on a MRI), but

she does have seizures.

Heidi Payton

--

[Guest guest]

Hi Anne,

Great! Let us know what he says.

Shirley, mom to and Jordan

On Saturday, January 24, 2004, at 01:45 PM, AReckling@... wrote:

> Shirley and Heidi,

>

> That's what Dr. S. told me that there are types of mitochondrial

> disease that only manifest themselves in myopathies and that, although

> the kids with that type of disease will get more fatigue as they age,

> etc., there lives will not be shortened and there will not be cognitive

> disability. I hope this is true! Ash has the myopathy and GI issues as

> well as absent reflexes.

>

> I'm going to ask this question to Dr. Boles - the specialist during the

> chat on Monday and see what he thinks. I also would like to read more

> and do a little research on the 'milder' mito disease - I hope it's

> true.

>

> Anne R

> Asher's mom

>

> Please contact mito-owner with any problems or

> questions.

>

>

>

>

[Guest guest]

Hi Anne,

Great! Let us know what he says.

Shirley, mom to and Jordan

On Saturday, January 24, 2004, at 01:45 PM, AReckling@... wrote:

> Shirley and Heidi,

>

> That's what Dr. S. told me that there are types of mitochondrial

> disease that only manifest themselves in myopathies and that, although

> the kids with that type of disease will get more fatigue as they age,

> etc., there lives will not be shortened and there will not be cognitive

> disability. I hope this is true! Ash has the myopathy and GI issues as

> well as absent reflexes.

>

> I'm going to ask this question to Dr. Boles - the specialist during the

> chat on Monday and see what he thinks. I also would like to read more

> and do a little research on the 'milder' mito disease - I hope it's

> true.

>

> Anne R

> Asher's mom

>

> Please contact mito-owner with any problems or

> questions.

>

>

>

>