Re: Question - help, please

[Guest guest]

Gracie usually does as Asher has, after an illness. Although she is down after a big illness she always regains eventually, sometimes longer sometimes really quick. I can also tell before she actually gets sick. This past week she has been very quiet and whinny, she went to her allergist yesterday, guess what an ear infection. The infection was still very mild, to the point which a normal child would have no symptoms, but with her it has knocked her down a few rungs on the ladder. This time it was fortunate because we still got it very early, and can treat it before it gets worse. I guess this can be a good thing too! Hope all goes well.

(Gracies mom)

[Guest guest]

Gracie usually does as Asher has, after an illness. Although she is down after a big illness she always regains eventually, sometimes longer sometimes really quick. I can also tell before she actually gets sick. This past week she has been very quiet and whinny, she went to her allergist yesterday, guess what an ear infection. The infection was still very mild, to the point which a normal child would have no symptoms, but with her it has knocked her down a few rungs on the ladder. This time it was fortunate because we still got it very early, and can treat it before it gets worse. I guess this can be a good thing too! Hope all goes well.

(Gracies mom)

[Guest guest]

Gracie usually does as Asher has, after an illness. Although she is down after a big illness she always regains eventually, sometimes longer sometimes really quick. I can also tell before she actually gets sick. This past week she has been very quiet and whinny, she went to her allergist yesterday, guess what an ear infection. The infection was still very mild, to the point which a normal child would have no symptoms, but with her it has knocked her down a few rungs on the ladder. This time it was fortunate because we still got it very early, and can treat it before it gets worse. I guess this can be a good thing too! Hope all goes well.

(Gracies mom)

[Guest guest]

Anne;

Always, when I am sick, my energy level fades significantly as my body sends

what energy it has to fighting whatever is causing the sickness! Often a

decrease in energy level is my first clue that I am getting something!

When my energy level is low, it is an effort to eat, to swallow, to bathe,

to dress ... and exercise??? .... <grin> ... next month, maybe? Cognitively,

I am usually fine, but concentration and word finding comes under the effort

classification!

If I am able, I try tweaking my Mito cocktail doseages ... generally I increase

my CoQ10 ... but YMMV (Your Mileage may vary).

Your description of Asher right now is pretty much how I feel when I am coming

down with something! Sickness causes stress to the body and stress is the

single greatest consumer of body energy. Got some chicken soup to pamper

him with, mom?

Jean, Mito granny

AReckling@... wrote:

Hi,

I have a question about my son, Asher. He will be 3 next week. He has had

a muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and

we won't get the results for a couple more months.

In the meantime, I want to ask if this sounds familiar to you all. Asher

(susp. mito, or myopathy or partial pyruvate dehydrogenase def.) had a serious

regression in strength and energy level following a very brief illness last

fall. He did not have any cognitive loss. He had a fever for a few days and

then basically lost his appetite for the next 2 months and his energy level

went gradually down as well as his muscular strength. I know that I've read

from you all that illnesses can bring on crisis states with acidosis and

the stroke-like episodes, but Asher's deterioration was more gradual. It

was not an abrupt loss of strength or energy or motor skills. Since

January we've been able to get him back to where he was like before he got

sick in the fall - we got him to drink milk and pediasure and gain weight

and PT 3x a week added to his energy and strength level.

BUT, now I'm starting to panic again b/c he's not eating much again and

he's hardly drinking his milk and pediasure. And, he doesn't want to participate

in PT and he's becoming really clingy again. He did have a cold a week ago

and then got another one this last weekend but it seems to be clearing. No

fever. B/c of his lack of energy again and his lack of appetite, I'm beginning

to wonder if we're starting the downhill slide again. It's so hard, b/c I

know most 'normal' people would say 'oh he's just not feeling well, so he's

not hungry or he doesn't have energy'. That may very well be true, but I

don't know.

My question is: have any of your kids shown a gradual downhill slide after

an illness rather than a sudden loss of skills or a sudden loss of cognitive

abilities?

Anne R

Please contact mito-owner with any problems or questions.

[Guest guest]

Anne;

Always, when I am sick, my energy level fades significantly as my body sends

what energy it has to fighting whatever is causing the sickness! Often a

decrease in energy level is my first clue that I am getting something!

When my energy level is low, it is an effort to eat, to swallow, to bathe,

to dress ... and exercise??? .... <grin> ... next month, maybe? Cognitively,

I am usually fine, but concentration and word finding comes under the effort

classification!

If I am able, I try tweaking my Mito cocktail doseages ... generally I increase

my CoQ10 ... but YMMV (Your Mileage may vary).

Your description of Asher right now is pretty much how I feel when I am coming

down with something! Sickness causes stress to the body and stress is the

single greatest consumer of body energy. Got some chicken soup to pamper

him with, mom?

Jean, Mito granny

AReckling@... wrote:

Hi,

I have a question about my son, Asher. He will be 3 next week. He has had

a muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and

we won't get the results for a couple more months.

In the meantime, I want to ask if this sounds familiar to you all. Asher

(susp. mito, or myopathy or partial pyruvate dehydrogenase def.) had a serious

regression in strength and energy level following a very brief illness last

fall. He did not have any cognitive loss. He had a fever for a few days and

then basically lost his appetite for the next 2 months and his energy level

went gradually down as well as his muscular strength. I know that I've read

from you all that illnesses can bring on crisis states with acidosis and

the stroke-like episodes, but Asher's deterioration was more gradual. It

was not an abrupt loss of strength or energy or motor skills. Since

January we've been able to get him back to where he was like before he got

sick in the fall - we got him to drink milk and pediasure and gain weight

and PT 3x a week added to his energy and strength level.

BUT, now I'm starting to panic again b/c he's not eating much again and

he's hardly drinking his milk and pediasure. And, he doesn't want to participate

in PT and he's becoming really clingy again. He did have a cold a week ago

and then got another one this last weekend but it seems to be clearing. No

fever. B/c of his lack of energy again and his lack of appetite, I'm beginning

to wonder if we're starting the downhill slide again. It's so hard, b/c I

know most 'normal' people would say 'oh he's just not feeling well, so he's

not hungry or he doesn't have energy'. That may very well be true, but I

don't know.

My question is: have any of your kids shown a gradual downhill slide after

an illness rather than a sudden loss of skills or a sudden loss of cognitive

abilities?

Anne R

Please contact mito-owner with any problems or questions.

[Guest guest]

Anne;

Always, when I am sick, my energy level fades significantly as my body sends

what energy it has to fighting whatever is causing the sickness! Often a

decrease in energy level is my first clue that I am getting something!

When my energy level is low, it is an effort to eat, to swallow, to bathe,

to dress ... and exercise??? .... <grin> ... next month, maybe? Cognitively,

I am usually fine, but concentration and word finding comes under the effort

classification!

If I am able, I try tweaking my Mito cocktail doseages ... generally I increase

my CoQ10 ... but YMMV (Your Mileage may vary).

Your description of Asher right now is pretty much how I feel when I am coming

down with something! Sickness causes stress to the body and stress is the

single greatest consumer of body energy. Got some chicken soup to pamper

him with, mom?

Jean, Mito granny

AReckling@... wrote:

Hi,

I have a question about my son, Asher. He will be 3 next week. He has had

a muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and

we won't get the results for a couple more months.

In the meantime, I want to ask if this sounds familiar to you all. Asher

(susp. mito, or myopathy or partial pyruvate dehydrogenase def.) had a serious

regression in strength and energy level following a very brief illness last

fall. He did not have any cognitive loss. He had a fever for a few days and

then basically lost his appetite for the next 2 months and his energy level

went gradually down as well as his muscular strength. I know that I've read

from you all that illnesses can bring on crisis states with acidosis and

the stroke-like episodes, but Asher's deterioration was more gradual. It

was not an abrupt loss of strength or energy or motor skills. Since

January we've been able to get him back to where he was like before he got

sick in the fall - we got him to drink milk and pediasure and gain weight

and PT 3x a week added to his energy and strength level.

BUT, now I'm starting to panic again b/c he's not eating much again and

he's hardly drinking his milk and pediasure. And, he doesn't want to participate

in PT and he's becoming really clingy again. He did have a cold a week ago

and then got another one this last weekend but it seems to be clearing. No

fever. B/c of his lack of energy again and his lack of appetite, I'm beginning

to wonder if we're starting the downhill slide again. It's so hard, b/c I

know most 'normal' people would say 'oh he's just not feeling well, so he's

not hungry or he doesn't have energy'. That may very well be true, but I

don't know.

My question is: have any of your kids shown a gradual downhill slide after

an illness rather than a sudden loss of skills or a sudden loss of cognitive

abilities?

Anne R

Please contact mito-owner with any problems or questions.

[Guest guest]

My

son’s is usually gradual. It has never been instant. will be 3 in

June – just to let you know that regaining his strength usually take

months after we hit the bottom.

Sue Ann Bube

Question - help,

please

Hi,

I have a question about my son, Asher. He will be 3 next week. He has had a

muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and we

won't get the results for a couple more months.

In the meantime, I want to ask if this sounds familiar to you all. Asher (susp.

mito, or myopathy or partial pyruvate dehydrogenase def.) had a serious

regression in strength and energy level following a very brief illness last

fall. He did not have any cognitive loss. He had a fever for a few days and then

basically lost his appetite for the next 2 months and his energy level went

gradually down as well as his muscular strength. I know that I've read from you

all that illnesses can bring on crisis states with acidosis and the stroke-like

episodes, but Asher's deterioration was more gradual. It was not an

abrupt loss of strength or energy or motor skills. Since January we've

been able to get him back to where he was like before he got sick in the fall -

we got him to drink milk and pediasure and gain weight and PT 3x a week added

to his energy and strength level.

BUT, now I'm starting to panic again b/c he's not eating much again and

he's hardly drinking his milk and pediasure. And, he doesn't want to

participate in PT and he's becoming really clingy again. He did have a cold a

week ago and then got another one this last weekend but it seems to be clearing.

No fever. B/c of his lack of energy again and his lack of appetite, I'm

beginning to wonder if we're starting the downhill slide again. It's so hard,

b/c I know most 'normal' people would say 'oh he's just not feeling well, so

he's not hungry or he doesn't have energy'. That may very well be true, but I

don't know.

My question is: have any of your kids shown a gradual downhill slide after an

illness rather than a sudden loss of skills or a sudden loss of cognitive

abilities?

Anne R

Please

contact mito-owner with any problems or questions.

[Guest guest]

Hello

My son recently had a loss of energy too. I looked at his throat and it was red so I took him to the Dr. (he had no fever ) he had mono. Which is unusual for a 4 year old. But atleast I know why he is not very energetic.

ANgel

Re: Question - help, please

Anne;Always, when I am sick, my energy level fades significantly as my body sends what energy it has to fighting whatever is causing the sickness! Often a decrease in energy level is my first clue that I am getting something!When my energy level is low, it is an effort to eat, to swallow, to bathe, to dress ... and exercise??? .... <grin> ... next month, maybe? Cognitively, I am usually fine, but concentration and word finding comes under the effort classification!If I am able, I try tweaking my Mito cocktail doseages ... generally I increase my CoQ10 ... but YMMV (Your Mileage may vary).Your description of Asher right now is pretty much how I feel when I am coming down with something! Sickness causes stress to the body and stress is the single greatest consumer of body energy. Got some chicken soup to pamper him with, mom?Jean, Mito grannyAReckling@... wrote:

Hi,I have a question about my son, Asher. He will be 3 next week. He has had a muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and we won't get the results for a couple more months. In the meantime, I want to ask if this sounds familiar to you all. Asher (susp. mito, or myopathy or partial pyruvate dehydrogenase def.) had a serious regression in strength and energy level following a very brief illness last fall. He did not have any cognitive loss. He had a fever for a few days and then basically lost his appetite for the next 2 months and his energy level went gradually down as well as his muscular strength. I know that I've read from you all that illnesses can bring on crisis states with acidosis and the stroke-like episodes, but Asher's deterioration was more gradual. It was not an abrupt loss of strength or energy or motor skills. Since January we've been able to get him back to where he was like before he got sick in the fall - we got him to drink milk and pediasure and gain weight and PT 3x a week added to his energy and strength level.BUT, now I'm starting to panic again b/c he's not eating much again and he's hardly drinking his milk and pediasure. And, he doesn't want to participate in PT and he's becoming really clingy again. He did have a cold a week ago and then got another one this last weekend but it seems to be clearing. No fever. B/c of his lack of energy again and his lack of appetite, I'm beginning to wonder if we're starting the downhill slide again. It's so hard, b/c I know most 'normal' people would say 'oh he's just not feeling well, so he's not hungry or he doesn't have energy'. That may very well be true, but I don't know.My question is: have any of your kids shown a gradual downhill slide after an illness rather than a sudden loss of skills or a sudden loss of cognitive abilities?Anne R Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Anne:

Yes, that happens with Leah. Even her sleeping habits change when

she gets sick. She wakes up more in the middle of the night and needs

just a parent to sleep with her or she is more thirsty and needs her bottle.

Actually what started our whole cycle was when Leah was I think was

5 or 6 months or may be younger that she had a virus. Fever but happy.

And it was at that point she changed. She lost skills and started

with some involuntary movements. That's what started our whole testing

process on her. We are still testing and don't have a definite answer.

Leah is usually more tired when she is ill, and we notice she does drop

in her appetite. It takes about a week or two for her to get back

on track with her eating. Right now, though, we haven't seen any

loss of skills when she gets ill. Even when she has to go to the

hospital and knock on wood we haven't been in the hospital for over a year

now for illness. But again, each child is different in how they handle

illness and if they lose any skills or loss of cognitive abilities.

But when Leah needs her rest, we let her rest. Some times we find

that is the best thing for her where her body is trying to restore her

energy level. And we try to feed her small meals through out the

day and not just her three meals. Plus if she doesn't want to eat,

we put polycose in her rice milk to boost her calorie intake with her rice

milk so she is getting some thing more.

Nerenhausen

mom to Leah

AReckling@... wrote:

Hi,

I have a question about my son, Asher.

He will be 3 next week. He has had a muscle, skin biopsy and CSF, blood,

urine labs all done by Shoffner and we won't get the results for a couple

more months.

In the meantime, I want to ask if this

sounds familiar to you all. Asher (susp. mito, or myopathy or partial pyruvate

dehydrogenase def.) had a serious regression in strength and energy level

following a very brief illness last fall. He did not have any cognitive

loss. He had a fever for a few days and then basically lost his appetite

for the next 2 months and his energy level went gradually down as well

as his muscular strength. I know that I've read from you all that illnesses

can bring on crisis states with acidosis and the stroke-like episodes,

but Asher's deterioration was more gradual. It was not an abrupt

loss of strength or energy or motor skills. Since January we've been

able to get him back to where he was like before he got sick in the fall

- we got him to drink milk and pediasure and gain weight and PT 3x a week

added to his energy and strength level.

BUT, now I'm starting to panic

again b/c he's not eating much again and he's hardly drinking his milk

and pediasure. And, he doesn't want to participate in PT and he's becoming

really clingy again. He did have a cold a week ago and then got another

one this last weekend but it seems to be clearing. No fever. B/c of his

lack of energy again and his lack of appetite, I'm beginning to wonder

if we're starting the downhill slide again. It's so hard, b/c I know most

'normal' people would say 'oh he's just not feeling well, so he's not hungry

or he doesn't have energy'. That may very well be true, but I don't know.

My question is: have any of your kids

shown a gradual downhill slide after an illness rather than a sudden loss

of skills or a sudden loss of cognitive abilities?

Anne R

Please contact mito-owner

with any problems or questions.

This

message scanned for viruses by Corecomm

[Guest guest]

Hi Anne

My son Colby gets that way every day. He gets sick when we travel(vomits), he really tires after school, he doesn't go very often. he is 13 and still takes long naps. Good Luck

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy>From: AReckling@... >Reply-To: Mito >To: Mito >Subject: Question - help, please >Date: Wed, 11 Feb 2004 11:45:10 EST > >Hi, > >I have a question about my son, Asher. He will be 3 next week. He has had a >muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and we >won't get the results for a couple more months. > >In the meantime, I want to ask if this sounds familiar to you all. Asher >(susp. mito, or myopathy or partial pyruvate dehydrogenase def.) had a serious >regression in strength and energy level following a very brief illness last fall. >He did not have any cognitive loss. He had a fever for a few days and then >basically lost his appetite for the next 2 months and his energy level went >gradually down as well as his muscular strength. I know that I've read from you >all that illnesses can bring on crisis states with acidosis and the stroke-like >episodes, but Asher's deterioration was more gradual. It was not an abrupt >loss of strength or energy or motor skills. Since January we've been able to get >him back to where he was like before he got sick in the fall - we got him to >drink milk and pediasure and gain weight and PT 3x a week added to his energy >and strength level. > >BUT, now I'm starting to panic again b/c he's not eating much again and he's >hardly drinking his milk and pediasure. And, he doesn't want to participate >in PT and he's becoming really clingy again. He did have a cold a week ago and >then got another one this last weekend but it seems to be clearing. No fever. >B/c of his lack of energy again and his lack of appetite, I'm beginning to >wonder if we're starting the downhill slide again. It's so hard, b/c I know most >'normal' people would say 'oh he's just not feeling well, so he's not hungry >or he doesn't have energy'. That may very well be true, but I don't know. > >My question is: have any of your kids shown a gradual downhill slide after an >illness rather than a sudden loss of skills or a sudden loss of cognitive >abilities? > >Anne R Create your own personal Web page with the info you use most, at My MSN.

[Guest guest]

Hi Anne

My son Colby gets that way every day. He gets sick when we travel(vomits), he really tires after school, he doesn't go very often. he is 13 and still takes long naps. Good Luck

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy>From: AReckling@... >Reply-To: Mito >To: Mito >Subject: Question - help, please >Date: Wed, 11 Feb 2004 11:45:10 EST > >Hi, > >I have a question about my son, Asher. He will be 3 next week. He has had a >muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and we >won't get the results for a couple more months. > >In the meantime, I want to ask if this sounds familiar to you all. Asher >(susp. mito, or myopathy or partial pyruvate dehydrogenase def.) had a serious >regression in strength and energy level following a very brief illness last fall. >He did not have any cognitive loss. He had a fever for a few days and then >basically lost his appetite for the next 2 months and his energy level went >gradually down as well as his muscular strength. I know that I've read from you >all that illnesses can bring on crisis states with acidosis and the stroke-like >episodes, but Asher's deterioration was more gradual. It was not an abrupt >loss of strength or energy or motor skills. Since January we've been able to get >him back to where he was like before he got sick in the fall - we got him to >drink milk and pediasure and gain weight and PT 3x a week added to his energy >and strength level. > >BUT, now I'm starting to panic again b/c he's not eating much again and he's >hardly drinking his milk and pediasure. And, he doesn't want to participate >in PT and he's becoming really clingy again. He did have a cold a week ago and >then got another one this last weekend but it seems to be clearing. No fever. >B/c of his lack of energy again and his lack of appetite, I'm beginning to >wonder if we're starting the downhill slide again. It's so hard, b/c I know most >'normal' people would say 'oh he's just not feeling well, so he's not hungry >or he doesn't have energy'. That may very well be true, but I don't know. > >My question is: have any of your kids shown a gradual downhill slide after an >illness rather than a sudden loss of skills or a sudden loss of cognitive >abilities? > >Anne R Create your own personal Web page with the info you use most, at My MSN.

[Guest guest]

Hi Anne

My son Colby gets that way every day. He gets sick when we travel(vomits), he really tires after school, he doesn't go very often. he is 13 and still takes long naps. Good Luck

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy>From: AReckling@... >Reply-To: Mito >To: Mito >Subject: Question - help, please >Date: Wed, 11 Feb 2004 11:45:10 EST > >Hi, > >I have a question about my son, Asher. He will be 3 next week. He has had a >muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and we >won't get the results for a couple more months. > >In the meantime, I want to ask if this sounds familiar to you all. Asher >(susp. mito, or myopathy or partial pyruvate dehydrogenase def.) had a serious >regression in strength and energy level following a very brief illness last fall. >He did not have any cognitive loss. He had a fever for a few days and then >basically lost his appetite for the next 2 months and his energy level went >gradually down as well as his muscular strength. I know that I've read from you >all that illnesses can bring on crisis states with acidosis and the stroke-like >episodes, but Asher's deterioration was more gradual. It was not an abrupt >loss of strength or energy or motor skills. Since January we've been able to get >him back to where he was like before he got sick in the fall - we got him to >drink milk and pediasure and gain weight and PT 3x a week added to his energy >and strength level. > >BUT, now I'm starting to panic again b/c he's not eating much again and he's >hardly drinking his milk and pediasure. And, he doesn't want to participate >in PT and he's becoming really clingy again. He did have a cold a week ago and >then got another one this last weekend but it seems to be clearing. No fever. >B/c of his lack of energy again and his lack of appetite, I'm beginning to >wonder if we're starting the downhill slide again. It's so hard, b/c I know most >'normal' people would say 'oh he's just not feeling well, so he's not hungry >or he doesn't have energy'. That may very well be true, but I don't know. > >My question is: have any of your kids shown a gradual downhill slide after an >illness rather than a sudden loss of skills or a sudden loss of cognitive >abilities? > >Anne R Create your own personal Web page with the info you use most, at My MSN.

[Guest guest]

Anne,

Our does this as well. She is no longer able to go to school. A short ca ride just wipes her out. Some days she sleeps 22 hours. The least little thing can set things off, just when it seems things are looking better......wam here we go again.

Just wanted you to know there are alot of us in this same boat.

Blessings,

Horsley

Question - help, please >Date: Wed, 11 Feb 2004 11:45:10 EST > >Hi, > >I have a question about my son, Asher. He will be 3 next week. He has had a >muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and we >won't get the results for a couple more months. > >In the meantime, I want to ask if this sounds familiar to you all. Asher >(susp. mito, or myopathy or partial pyruvate dehydrogenase def.) had a serious >regression in strength and energy level following a very brief illness last fall. >He did not have any cognitive loss. He had a fever for a few days and then >basically lost his appetite for the next 2 months and his energy level went >gradually down as well as his muscular strength. I know that I've read from you >all that illnesses can bring on crisis states with acidosis and the stroke-like >episodes, but Asher's deterioration was more gradual. It was not an abrupt >loss of strength or energy or motor skills. Since January we've been able to get >him back to where he was like before he got sick in the fall - we got him to >drink milk and pediasure and gain weight and PT 3x a week added to his energy >and strength level. > >BUT, now I'm starting to panic again b/c he's not eating much again and he's >hardly drinking his milk and pediasure. And, he doesn't want to participate >in PT and he's becoming really clingy again. He did have a cold a week ago and >then got another one this last weekend but it seems to be clearing. No fever. >B/c of his lack of energy again and his lack of appetite, I'm beginning to >wonder if we're starting the downhill slide again. It's so hard, b/c I know most >'normal' people would say 'oh he's just not feeling well, so he's not hungry >or he doesn't have energy'. That may very well be true, but I don't know. > >My question is: have any of your kids shown a gradual downhill slide after an >illness rather than a sudden loss of skills or a sudden loss of cognitive >abilities? > >Anne R

Create your own personal Web page with the info you use most, at My MSN. Please contact mito-owner with any problems or questions.

[Guest guest]

Anne,

Our does this as well. She is no longer able to go to school. A short ca ride just wipes her out. Some days she sleeps 22 hours. The least little thing can set things off, just when it seems things are looking better......wam here we go again.

Just wanted you to know there are alot of us in this same boat.

Blessings,

Horsley

Question - help, please >Date: Wed, 11 Feb 2004 11:45:10 EST > >Hi, > >I have a question about my son, Asher. He will be 3 next week. He has had a >muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and we >won't get the results for a couple more months. > >In the meantime, I want to ask if this sounds familiar to you all. Asher >(susp. mito, or myopathy or partial pyruvate dehydrogenase def.) had a serious >regression in strength and energy level following a very brief illness last fall. >He did not have any cognitive loss. He had a fever for a few days and then >basically lost his appetite for the next 2 months and his energy level went >gradually down as well as his muscular strength. I know that I've read from you >all that illnesses can bring on crisis states with acidosis and the stroke-like >episodes, but Asher's deterioration was more gradual. It was not an abrupt >loss of strength or energy or motor skills. Since January we've been able to get >him back to where he was like before he got sick in the fall - we got him to >drink milk and pediasure and gain weight and PT 3x a week added to his energy >and strength level. > >BUT, now I'm starting to panic again b/c he's not eating much again and he's >hardly drinking his milk and pediasure. And, he doesn't want to participate >in PT and he's becoming really clingy again. He did have a cold a week ago and >then got another one this last weekend but it seems to be clearing. No fever. >B/c of his lack of energy again and his lack of appetite, I'm beginning to >wonder if we're starting the downhill slide again. It's so hard, b/c I know most >'normal' people would say 'oh he's just not feeling well, so he's not hungry >or he doesn't have energy'. That may very well be true, but I don't know. > >My question is: have any of your kids shown a gradual downhill slide after an >illness rather than a sudden loss of skills or a sudden loss of cognitive >abilities? > >Anne R

Create your own personal Web page with the info you use most, at My MSN. Please contact mito-owner with any problems or questions.

[Guest guest]

Anne,

Our does this as well. She is no longer able to go to school. A short ca ride just wipes her out. Some days she sleeps 22 hours. The least little thing can set things off, just when it seems things are looking better......wam here we go again.

Just wanted you to know there are alot of us in this same boat.

Blessings,

Horsley

Question - help, please >Date: Wed, 11 Feb 2004 11:45:10 EST > >Hi, > >I have a question about my son, Asher. He will be 3 next week. He has had a >muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and we >won't get the results for a couple more months. > >In the meantime, I want to ask if this sounds familiar to you all. Asher >(susp. mito, or myopathy or partial pyruvate dehydrogenase def.) had a serious >regression in strength and energy level following a very brief illness last fall. >He did not have any cognitive loss. He had a fever for a few days and then >basically lost his appetite for the next 2 months and his energy level went >gradually down as well as his muscular strength. I know that I've read from you >all that illnesses can bring on crisis states with acidosis and the stroke-like >episodes, but Asher's deterioration was more gradual. It was not an abrupt >loss of strength or energy or motor skills. Since January we've been able to get >him back to where he was like before he got sick in the fall - we got him to >drink milk and pediasure and gain weight and PT 3x a week added to his energy >and strength level. > >BUT, now I'm starting to panic again b/c he's not eating much again and he's >hardly drinking his milk and pediasure. And, he doesn't want to participate >in PT and he's becoming really clingy again. He did have a cold a week ago and >then got another one this last weekend but it seems to be clearing. No fever. >B/c of his lack of energy again and his lack of appetite, I'm beginning to >wonder if we're starting the downhill slide again. It's so hard, b/c I know most >'normal' people would say 'oh he's just not feeling well, so he's not hungry >or he doesn't have energy'. That may very well be true, but I don't know. > >My question is: have any of your kids shown a gradual downhill slide after an >illness rather than a sudden loss of skills or a sudden loss of cognitive >abilities? > >Anne R

Create your own personal Web page with the info you use most, at My MSN. Please contact mito-owner with any problems or questions.

[Guest guest]

Dear Anne,

Regarding your son

Asher, what you are describing sounds very familiar. My 2 girls have mito. Samya died a little

over a year ago, and Leanna also has it. The loss of skills can be either very

suddenly, as was the case of Samya, or a gradual slow decline as is with Leanna

at times. That is why this disease is so darn complicated. It is so

unpredictable, even with 2 siblings with the same exact mutation. Samya only

had one decline after an illness that I can recall at age 2 and it was very

gradual. In fact, she was not diagnose at the time, and I thought nothing of it.

The next crisis following an illness was at age 8 and that one took her life in

less than 2 months total. Leanna had a crisis following mononucleosis at age 4 where

she developed ataxia, and severe lack of energy, but started to recover slowly.

It took her aboput 2 months to recover, and very little appetite. Recently, at Christmas,

she developed the second crisis of her life. She got a sinus infection, and slowly

lost energy and appetite. Although the sinus infection was cleared up, the lack

of energy, and little appetite, slow speech , hardly talking all continued over

about 2 weeks time. She was put on Arginine, and started to recover slowly. She

is now back to school, and almost fully recovered with energy, appetite etc. However,

she definitely had loss of skills that were permanent. This is a progressive disease,

so I am aware that she will get worse over time, not better regardless of what we

do. Losing Samya made that reality always stay in my mind. In fact, Leanna will

probably die, and I try to accept that and make the most of her abilities today.

One thing I have learned about this ugly disease is how quickly it can take away

all those skills that the children work years to acquire. That is probably the hardest

thing for me is knowing that she worked so damn hard to get where she was and now

is at least a year behind with everything from cognitition to skills to strength.

I also realized during her crisis that any crisis can take her life without a warning.

There is no rhyme or reason as to why one illness does it and on does not. That

has been my experience. WE thought we were very close to losing Leanna in December,

and yet she recovered. We never know what tomorrow holds. In fact, today I was planning

a trip for our family to Maui this summer and made

sure I had insurance for cancellation because you never know. Good luck

to you.

Love,

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.Samya.org

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From:

AReckling@...

Sent: Wednesday, February 11, 2004

8:45 AM

To: Mito

Subject: Question - help, please

Hi,

I have a question about my son, Asher. He will be 3 next week. He has had a

muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and we

won't get the results for a couple more months.

In the meantime, I want to ask if this sounds familiar to you all. Asher (susp.

mito, or

myopathy or partial pyruvate dehydrogenase def.) had a serious regression in

strength and energy level following a very brief illness last fall. He did not

have any cognitive loss. He had a fever for a few days and then basically lost

his appetite for the next 2 months and his energy level went gradually down as

well as his muscular strength. I know that I've read from you all that

illnesses can bring on crisis states with acidosis and the stroke-like

episodes, but Asher's deterioration was more gradual. It was not an

abrupt loss of strength or energy or motor skills. Since January we've

been able to get him back to where he was like before he got sick in the fall -

we got him to drink milk and pediasure and gain weight and PT 3x a week added

to his energy and strength level.

BUT, now I'm starting to panic again b/c he's not eating much again and

he's hardly drinking his milk and pediasure. And, he doesn't want to

participate in PT and he's becoming really clingy again. He did have a cold a

week ago and then got another one this last weekend but it seems to be clearing.

No fever. B/c of his lack of energy again and his lack of appetite, I'm

beginning to wonder if we're starting the downhill slide again. It's so hard,

b/c I know most 'normal' people would say 'oh he's just not feeling well, so

he's not hungry or he doesn't have energy'. That may very well be true, but I

don't know.

My question is: have any of your kids shown a gradual downhill slide after an

illness rather than a sudden loss of skills or a sudden loss of cognitive

abilities?

Anne R

Please

contact mito-owner with any problems or questions.

[Guest guest]

Dear Anne,

Regarding your son

Asher, what you are describing sounds very familiar. My 2 girls have mito. Samya died a little

over a year ago, and Leanna also has it. The loss of skills can be either very

suddenly, as was the case of Samya, or a gradual slow decline as is with Leanna

at times. That is why this disease is so darn complicated. It is so

unpredictable, even with 2 siblings with the same exact mutation. Samya only

had one decline after an illness that I can recall at age 2 and it was very

gradual. In fact, she was not diagnose at the time, and I thought nothing of it.

The next crisis following an illness was at age 8 and that one took her life in

less than 2 months total. Leanna had a crisis following mononucleosis at age 4 where

she developed ataxia, and severe lack of energy, but started to recover slowly.

It took her aboput 2 months to recover, and very little appetite. Recently, at Christmas,

she developed the second crisis of her life. She got a sinus infection, and slowly

lost energy and appetite. Although the sinus infection was cleared up, the lack

of energy, and little appetite, slow speech , hardly talking all continued over

about 2 weeks time. She was put on Arginine, and started to recover slowly. She

is now back to school, and almost fully recovered with energy, appetite etc. However,

she definitely had loss of skills that were permanent. This is a progressive disease,

so I am aware that she will get worse over time, not better regardless of what we

do. Losing Samya made that reality always stay in my mind. In fact, Leanna will

probably die, and I try to accept that and make the most of her abilities today.

One thing I have learned about this ugly disease is how quickly it can take away

all those skills that the children work years to acquire. That is probably the hardest

thing for me is knowing that she worked so damn hard to get where she was and now

is at least a year behind with everything from cognitition to skills to strength.

I also realized during her crisis that any crisis can take her life without a warning.

There is no rhyme or reason as to why one illness does it and on does not. That

has been my experience. WE thought we were very close to losing Leanna in December,

and yet she recovered. We never know what tomorrow holds. In fact, today I was planning

a trip for our family to Maui this summer and made

sure I had insurance for cancellation because you never know. Good luck

to you.

Love,

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.Samya.org

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From:

AReckling@...

Sent: Wednesday, February 11, 2004

8:45 AM

To: Mito

Subject: Question - help, please

Hi,

I have a question about my son, Asher. He will be 3 next week. He has had a

muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and we

won't get the results for a couple more months.

In the meantime, I want to ask if this sounds familiar to you all. Asher (susp.

mito, or

myopathy or partial pyruvate dehydrogenase def.) had a serious regression in

strength and energy level following a very brief illness last fall. He did not

have any cognitive loss. He had a fever for a few days and then basically lost

his appetite for the next 2 months and his energy level went gradually down as

well as his muscular strength. I know that I've read from you all that

illnesses can bring on crisis states with acidosis and the stroke-like

episodes, but Asher's deterioration was more gradual. It was not an

abrupt loss of strength or energy or motor skills. Since January we've

been able to get him back to where he was like before he got sick in the fall -

we got him to drink milk and pediasure and gain weight and PT 3x a week added

to his energy and strength level.

BUT, now I'm starting to panic again b/c he's not eating much again and

he's hardly drinking his milk and pediasure. And, he doesn't want to

participate in PT and he's becoming really clingy again. He did have a cold a

week ago and then got another one this last weekend but it seems to be clearing.

No fever. B/c of his lack of energy again and his lack of appetite, I'm

beginning to wonder if we're starting the downhill slide again. It's so hard,

b/c I know most 'normal' people would say 'oh he's just not feeling well, so

he's not hungry or he doesn't have energy'. That may very well be true, but I

don't know.

My question is: have any of your kids shown a gradual downhill slide after an

illness rather than a sudden loss of skills or a sudden loss of cognitive

abilities?

Anne R

Please

contact mito-owner with any problems or questions.

[Guest guest]

Dear Anne,

Regarding your son

Asher, what you are describing sounds very familiar. My 2 girls have mito. Samya died a little

over a year ago, and Leanna also has it. The loss of skills can be either very

suddenly, as was the case of Samya, or a gradual slow decline as is with Leanna

at times. That is why this disease is so darn complicated. It is so

unpredictable, even with 2 siblings with the same exact mutation. Samya only

had one decline after an illness that I can recall at age 2 and it was very

gradual. In fact, she was not diagnose at the time, and I thought nothing of it.

The next crisis following an illness was at age 8 and that one took her life in

less than 2 months total. Leanna had a crisis following mononucleosis at age 4 where

she developed ataxia, and severe lack of energy, but started to recover slowly.

It took her aboput 2 months to recover, and very little appetite. Recently, at Christmas,

she developed the second crisis of her life. She got a sinus infection, and slowly

lost energy and appetite. Although the sinus infection was cleared up, the lack

of energy, and little appetite, slow speech , hardly talking all continued over

about 2 weeks time. She was put on Arginine, and started to recover slowly. She

is now back to school, and almost fully recovered with energy, appetite etc. However,

she definitely had loss of skills that were permanent. This is a progressive disease,

so I am aware that she will get worse over time, not better regardless of what we

do. Losing Samya made that reality always stay in my mind. In fact, Leanna will

probably die, and I try to accept that and make the most of her abilities today.

One thing I have learned about this ugly disease is how quickly it can take away

all those skills that the children work years to acquire. That is probably the hardest

thing for me is knowing that she worked so damn hard to get where she was and now

is at least a year behind with everything from cognitition to skills to strength.

I also realized during her crisis that any crisis can take her life without a warning.

There is no rhyme or reason as to why one illness does it and on does not. That

has been my experience. WE thought we were very close to losing Leanna in December,

and yet she recovered. We never know what tomorrow holds. In fact, today I was planning

a trip for our family to Maui this summer and made

sure I had insurance for cancellation because you never know. Good luck

to you.

Love,

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.Samya.org

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From:

AReckling@...

Sent: Wednesday, February 11, 2004

8:45 AM

To: Mito

Subject: Question - help, please

Hi,

I have a question about my son, Asher. He will be 3 next week. He has had a

muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and we

won't get the results for a couple more months.

In the meantime, I want to ask if this sounds familiar to you all. Asher (susp.

mito, or

myopathy or partial pyruvate dehydrogenase def.) had a serious regression in

strength and energy level following a very brief illness last fall. He did not

have any cognitive loss. He had a fever for a few days and then basically lost

his appetite for the next 2 months and his energy level went gradually down as

well as his muscular strength. I know that I've read from you all that

illnesses can bring on crisis states with acidosis and the stroke-like

episodes, but Asher's deterioration was more gradual. It was not an

abrupt loss of strength or energy or motor skills. Since January we've

been able to get him back to where he was like before he got sick in the fall -

we got him to drink milk and pediasure and gain weight and PT 3x a week added

to his energy and strength level.

BUT, now I'm starting to panic again b/c he's not eating much again and

he's hardly drinking his milk and pediasure. And, he doesn't want to

participate in PT and he's becoming really clingy again. He did have a cold a

week ago and then got another one this last weekend but it seems to be clearing.

No fever. B/c of his lack of energy again and his lack of appetite, I'm

beginning to wonder if we're starting the downhill slide again. It's so hard,

b/c I know most 'normal' people would say 'oh he's just not feeling well, so

he's not hungry or he doesn't have energy'. That may very well be true, but I

don't know.

My question is: have any of your kids shown a gradual downhill slide after an

illness rather than a sudden loss of skills or a sudden loss of cognitive

abilities?

Anne R

Please

contact mito-owner with any problems or questions.

[Guest guest]

Thanks everyone! I have to say I was kind of hoping that you'd all say that it was a "sudden" loss of skills that kids with mito have (I'm still hoping that mito won't be Asher's diagnosis) but is always helpful to know we aren't the "only" ones dealing with this yucky stuff.

Thanks,

Anne R

[Guest guest]

Thanks everyone! I have to say I was kind of hoping that you'd all say that it was a "sudden" loss of skills that kids with mito have (I'm still hoping that mito won't be Asher's diagnosis) but is always helpful to know we aren't the "only" ones dealing with this yucky stuff.

Thanks,

Anne R

[Guest guest]

Thanks everyone! I have to say I was kind of hoping that you'd all say that it was a "sudden" loss of skills that kids with mito have (I'm still hoping that mito won't be Asher's diagnosis) but is always helpful to know we aren't the "only" ones dealing with this yucky stuff.

Thanks,

Anne R

[Guest guest]

Thanks

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy>From: "Tommie & Horsley" >Reply-To: Mito >To: >Subject: Re: Question - help, please >Date: Wed, 11 Feb 2004 16:06:19 -0600 > >Anne, > >Our does this as well. She is no longer able to go to school. A short ca ride just wipes her out. Some days she sleeps 22 hours. The least little thing can set things off, just when it seems things are looking better......wam here we go again. >Just wanted you to know there are alot of us in this same boat. >Blessings, > Horsley > Question - help, please >Date: Wed, 11 Feb 2004 11:45:10 EST > >Hi, > >I have a question about my son, Asher. He will be 3 next week. He has had a >muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and we >won't get the results for a couple more months. > >In the meantime, I want to ask if this sounds familiar to you all. Asher >(susp. mito, or myopathy or partial pyruvate dehydrogenase def.) had a serious >regression in strength and energy level following a very brief illness last fall. >He did not have any cognitive loss. He had a fever for a few days and then >basically lost his appetite for the next 2 months and his energy level went >gradually down as well as his muscular strength. I know that I've read from you >all that illnesses can bring on crisis states with acidosis and the stroke-like >episodes, but Asher's deterioration was more gradual. It was not an abrupt >loss of strength or energy or motor skills. Since January we've been able to get >him back to where he was like before he got sick in the fall - we got him to >drink milk and pediasure and gain weight and PT 3x a week added to his energy >and strength level. > >BUT, now I'm starting to panic again b/c he's not eating much again and he's >hardly drinking his milk and pediasure. And, he doesn't want to participate >in PT and he's becoming really clingy again. He did have a cold a week ago and >then got another one this last weekend but it seems to be clearing. No fever. >B/c of his lack of energy again and his lack of appetite, I'm beginning to >wonder if we're starting the downhill slide again. It's so hard, b/c I know most >'normal' people would say 'oh he's just not feeling well, so he's not hungry >or he doesn't have energy'. That may very well be true, but I don't know. > >My question is: have any of your kids shown a gradual downhill slide after an >illness rather than a sudden loss of skills or a sudden loss of cognitive >abilities? > >Anne R > > >------------------------------------------------------------------------------ > Create your own personal Web page with the info you use most, at My MSN. > > Please contact mito-owner with any problems or questions. > > > >------------------------------------------------------------------------------ >

[Guest guest]

Thanks

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy>From: "Tommie & Horsley" >Reply-To: Mito >To: >Subject: Re: Question - help, please >Date: Wed, 11 Feb 2004 16:06:19 -0600 > >Anne, > >Our does this as well. She is no longer able to go to school. A short ca ride just wipes her out. Some days she sleeps 22 hours. The least little thing can set things off, just when it seems things are looking better......wam here we go again. >Just wanted you to know there are alot of us in this same boat. >Blessings, > Horsley > Question - help, please >Date: Wed, 11 Feb 2004 11:45:10 EST > >Hi, > >I have a question about my son, Asher. He will be 3 next week. He has had a >muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and we >won't get the results for a couple more months. > >In the meantime, I want to ask if this sounds familiar to you all. Asher >(susp. mito, or myopathy or partial pyruvate dehydrogenase def.) had a serious >regression in strength and energy level following a very brief illness last fall. >He did not have any cognitive loss. He had a fever for a few days and then >basically lost his appetite for the next 2 months and his energy level went >gradually down as well as his muscular strength. I know that I've read from you >all that illnesses can bring on crisis states with acidosis and the stroke-like >episodes, but Asher's deterioration was more gradual. It was not an abrupt >loss of strength or energy or motor skills. Since January we've been able to get >him back to where he was like before he got sick in the fall - we got him to >drink milk and pediasure and gain weight and PT 3x a week added to his energy >and strength level. > >BUT, now I'm starting to panic again b/c he's not eating much again and he's >hardly drinking his milk and pediasure. And, he doesn't want to participate >in PT and he's becoming really clingy again. He did have a cold a week ago and >then got another one this last weekend but it seems to be clearing. No fever. >B/c of his lack of energy again and his lack of appetite, I'm beginning to >wonder if we're starting the downhill slide again. It's so hard, b/c I know most >'normal' people would say 'oh he's just not feeling well, so he's not hungry >or he doesn't have energy'. That may very well be true, but I don't know. > >My question is: have any of your kids shown a gradual downhill slide after an >illness rather than a sudden loss of skills or a sudden loss of cognitive >abilities? > >Anne R > > >------------------------------------------------------------------------------ > Create your own personal Web page with the info you use most, at My MSN. > > Please contact mito-owner with any problems or questions. > > > >------------------------------------------------------------------------------ >

[Guest guest]

Thanks

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy>From: "Tommie & Horsley" >Reply-To: Mito >To: >Subject: Re: Question - help, please >Date: Wed, 11 Feb 2004 16:06:19 -0600 > >Anne, > >Our does this as well. She is no longer able to go to school. A short ca ride just wipes her out. Some days she sleeps 22 hours. The least little thing can set things off, just when it seems things are looking better......wam here we go again. >Just wanted you to know there are alot of us in this same boat. >Blessings, > Horsley > Question - help, please >Date: Wed, 11 Feb 2004 11:45:10 EST > >Hi, > >I have a question about my son, Asher. He will be 3 next week. He has had a >muscle, skin biopsy and CSF, blood, urine labs all done by Shoffner and we >won't get the results for a couple more months. > >In the meantime, I want to ask if this sounds familiar to you all. Asher >(susp. mito, or myopathy or partial pyruvate dehydrogenase def.) had a serious >regression in strength and energy level following a very brief illness last fall. >He did not have any cognitive loss. He had a fever for a few days and then >basically lost his appetite for the next 2 months and his energy level went >gradually down as well as his muscular strength. I know that I've read from you >all that illnesses can bring on crisis states with acidosis and the stroke-like >episodes, but Asher's deterioration was more gradual. It was not an abrupt >loss of strength or energy or motor skills. Since January we've been able to get >him back to where he was like before he got sick in the fall - we got him to >drink milk and pediasure and gain weight and PT 3x a week added to his energy >and strength level. > >BUT, now I'm starting to panic again b/c he's not eating much again and he's >hardly drinking his milk and pediasure. And, he doesn't want to participate >in PT and he's becoming really clingy again. He did have a cold a week ago and >then got another one this last weekend but it seems to be clearing. No fever. >B/c of his lack of energy again and his lack of appetite, I'm beginning to >wonder if we're starting the downhill slide again. It's so hard, b/c I know most >'normal' people would say 'oh he's just not feeling well, so he's not hungry >or he doesn't have energy'. That may very well be true, but I don't know. > >My question is: have any of your kids shown a gradual downhill slide after an >illness rather than a sudden loss of skills or a sudden loss of cognitive >abilities? > >Anne R > > >------------------------------------------------------------------------------ > Create your own personal Web page with the info you use most, at My MSN. > > Please contact mito-owner with any problems or questions. > > > >------------------------------------------------------------------------------ >

[Guest guest]

Suhad,I am always inspired by the lives of your 2 children, (as you relay them to us) and by your mothering to them. I hope with all my heart that your family goes to Maui this summer and has a wonderful time. Like you I recognize that the future is very uncertain and we need to just focus on today. It I hard sometimes but you do a beautiful job of it, all the while still having the compassion and courage to share your stories of the past and wonders about the future to others with such honesty. We can not help but learn from you. Anne Juhlmannwww.caringbridge.org/wi/zachsam