Re: myopathies

[Guest guest]

I think of myopathies as muscle diseases. It can be in the nerves as well but it's not in the Central Nervous System (spine, brain). My son has muscular weakness and fatigue (somewhat worse on the right side) but it's not CNS related (at least from what they can tell). I thought he had poor coordination b/c he falls a lot but I've been told that he falls b/c of weakness and absent reflexes and that actually his coordination is okay.

Does that help?

Anne R

[Guest guest]

AReckling@... wrote:

I think of

myopathies as muscle diseases. It can be in the nerves as well but it's

not in the Central Nervous System (spine, brain). My son has muscular weakness

and fatigue (somewhat worse on the right side) but it's not CNS related

(at least from what they can tell). I thought he had poor coordination

b/c he falls a lot but I've been told that he falls b/c of weakness and

absent reflexes and that actually his coordination is okay.

Does that help?

Yes, it does. So - at least in your son's case,

his symptoms are pretty much the same all the time? I mean, it probably

gets worse if he uses those muscles a lot - but you probably see the effects

right away, too? But in general, it's about the same all the time,

and the same reactions to exercise all the time?

Lynne

[Guest guest]

Lynne,

I'd have to say that the muscle issues are usually the same, although, at times, they've seemed to get progressively worse (although at a steady even pace) b/c he also has had very serious problems with his appetite and lack of weight gain. That seems to be sporadic - and is very scary as he lost weight this year and almost had to be on a g-tube. He's had sensory integration issues as well, but most of those have resolved except those related to feeding. He really doesn't seem to have much interest in eating and that changes over time. But, yes, the muscle issues seem to remain fairly constant.

Annr R

[Guest guest]

When our son at three years complete hemiplegia -- entirely unable to move

his right side, from toe to lopsided smile -- docs were baffled for a week

until they tried an anti-seizure med, and he was back to normal within

fifteen minutes.

He had had a seizure for a week, causing various brain injuries because

it was allowed to last for so long.

So you may want to look at this as a potential cause of your son's

issues..

peter

AReckling@... wrote:

Lynne,

I'd have to say that the muscle issues

are usually the same, although, at times, they've seemed to get progressively

worse (although at a steady even pace) b/c he also has had very serious

problems with his appetite and lack of weight gain. That seems to be sporadic

- and is very scary as he lost weight this year and almost had to be on

a g-tube. He's had sensory integration issues as well, but most of those

have resolved except those related to feeding. He really doesn't seem to

have much interest in eating and that changes over time. But, yes, the

muscle issues seem to remain fairly constant.

Annr R

Please contact mito-owner

with any problems or questions.

[Guest guest]

When our son at three years complete hemiplegia -- entirely unable to move

his right side, from toe to lopsided smile -- docs were baffled for a week

until they tried an anti-seizure med, and he was back to normal within

fifteen minutes.

He had had a seizure for a week, causing various brain injuries because

it was allowed to last for so long.

So you may want to look at this as a potential cause of your son's

issues..

peter

AReckling@... wrote:

Lynne,

I'd have to say that the muscle issues

are usually the same, although, at times, they've seemed to get progressively

worse (although at a steady even pace) b/c he also has had very serious

problems with his appetite and lack of weight gain. That seems to be sporadic

- and is very scary as he lost weight this year and almost had to be on

a g-tube. He's had sensory integration issues as well, but most of those

have resolved except those related to feeding. He really doesn't seem to

have much interest in eating and that changes over time. But, yes, the

muscle issues seem to remain fairly constant.

Annr R

Please contact mito-owner

with any problems or questions.

[Guest guest]

When our son at three years complete hemiplegia -- entirely unable to move

his right side, from toe to lopsided smile -- docs were baffled for a week

until they tried an anti-seizure med, and he was back to normal within

fifteen minutes.

He had had a seizure for a week, causing various brain injuries because

it was allowed to last for so long.

So you may want to look at this as a potential cause of your son's

issues..

peter

AReckling@... wrote:

Lynne,

I'd have to say that the muscle issues

are usually the same, although, at times, they've seemed to get progressively

worse (although at a steady even pace) b/c he also has had very serious

problems with his appetite and lack of weight gain. That seems to be sporadic

- and is very scary as he lost weight this year and almost had to be on

a g-tube. He's had sensory integration issues as well, but most of those

have resolved except those related to feeding. He really doesn't seem to

have much interest in eating and that changes over time. But, yes, the

muscle issues seem to remain fairly constant.

Annr R

Please contact mito-owner

with any problems or questions.

[Guest guest]

,

I know from talking to other parents on this list that failure to thrive (i.e. lack of weight gain) and lack of appetite is fairly common. Asher takes Periactin as an appetite stimulant and that seems to help.

Anne R