Re: Low Temps, sweats, and pale...

[Guest guest]

In a message dated 6/4/02 9:20:46 AM Pacific Daylight Time, ryan4me@...

writes:

<< To make matters worse......except for my oldest son who actually GOT

the chicken poxs my other 4 have gotten the chicken pox

immunization. Well low and behold my 2 year old appears to be

breaking out in the chicken pox today after her playmate (who all my

children were exposed to) began breaking out on Friday. I am worried

that he may too get the chicken pox....is there any increased risk of

him getting them if he does??? Anyone else here have kids with mito

that have gotten the chicken pox???? Thanks for ANYTHING ya'll can

suggest!

>>

got the immunization and then got chicken pox about 4 or 5 years

later. It was a very strange looking presentation, enough so that the PCP

(who is head of a children's hospital peds clinic) didn't know what it was.

The only way we knew it was chickenpox is when his brother and sister (who

had not been immunized) broke out several wks later. had these huge,

strange non-pox looking things, and was quite ill/high fever, but never had

to be hospitalized. Hope things go well for you too!

Dena

[Guest guest]

In a message dated 6/4/02 9:20:46 AM Pacific Daylight Time, ryan4me@...

writes:

<< To make matters worse......except for my oldest son who actually GOT

the chicken poxs my other 4 have gotten the chicken pox

immunization. Well low and behold my 2 year old appears to be

breaking out in the chicken pox today after her playmate (who all my

children were exposed to) began breaking out on Friday. I am worried

that he may too get the chicken pox....is there any increased risk of

him getting them if he does??? Anyone else here have kids with mito

that have gotten the chicken pox???? Thanks for ANYTHING ya'll can

suggest!

>>

got the immunization and then got chicken pox about 4 or 5 years

later. It was a very strange looking presentation, enough so that the PCP

(who is head of a children's hospital peds clinic) didn't know what it was.

The only way we knew it was chickenpox is when his brother and sister (who

had not been immunized) broke out several wks later. had these huge,

strange non-pox looking things, and was quite ill/high fever, but never had

to be hospitalized. Hope things go well for you too!

Dena

[Guest guest]

:

Even though a child gets a chicken pox vaccine it doesn't prevent them from

getting the chicken pox. They can have a light case. But it is my

understanding that when a child with mito is ill they are putting stress on

their body and that's what you don't want. I don't know if Luke would need

an IV that has the glucose and such even if they aren't dehdyrated. But I

know you need to be a little cautious here. May be you can post the question

to a mito doc on the UMDF website of ask the doc or may be Ken knows the

answer to this one if he is reading this. Did Luke have the vaccine for

chicken pox?

N. mom to Leah

mykidzx5 wrote:

> Once again, I am posting in time of need. Once again here is a short

> history...... Luke is now 6. Diagnosed with mito myopathy (that is

> ALL the diagnosis we got at the time...can you believe I actually

> thought that was a FULL diagnosis!) when he was 9 months old from a

> frozen muscle/nerve biopsy. Since he was a little over a year he has

> caught up in all areas that he was originally lagging (they

> originally expected him to be cognitavely and physically challenged)

> and is pretty much " normal " other than huge appetite for his slight

> 50 lb frame and requiring more sleep than normal. Although he does

> have an eye that ever so slightly turns in when tired or run down.

> Last summer we did have an episode when we were at the little league

> fields where he was fine one minute and then pale, blue around the

> lips, lethargic and seizure like the next. A few hours late (by the

> time we were saw in the ER) he was better although extrememly hard to

> arouse. Went back to all the specialties and he pretty much got a

> clean bill of health.

>

> And then we have today. This morning Luke came upstairs and was

> sweating around his hair line with sweat running down his cheek. I

> asked him what he had been doing (we live in Nebraska now and the

> house is cool) as I was wondering why he was sweating and he said

> playing XBox. He was also very palid. I took his temp and it was

> about 97.....he also always runs about 97.6 to 98. Thirty minutes

> later I was making his lunch and he pretty much just shut down and

> went fast asleep sprawled out on the kitchen floor. He slept for

> about 2 hours. Upon waking he was very pale with white lips and

> draggy looking...took his temperature again and this time the mercury

> in the glass thermometer dropped all the way to where you couldn't

> see it so his temperature was probably around 96. Got very

> concerned...gave him a glass of koolaid and after drinking about half

> he immediately perked up in both color and activity. I am thinking I

> should call the doctor here, but since we are pretty new here I don't

> have a lot of trust in them so wonder if there is anyone that has any

> idea what could be going on with him and what I should do or ask them

> to look for. I am worried he may " crash " one of these times....

>

> To make matters worse......except for my oldest son who actually GOT

> the chicken poxs my other 4 have gotten the chicken pox

> immunization. Well low and behold my 2 year old appears to be

> breaking out in the chicken pox today after her playmate (who all my

> children were exposed to) began breaking out on Friday. I am worried

> that he may too get the chicken pox....is there any increased risk of

> him getting them if he does??? Anyone else here have kids with mito

> that have gotten the chicken pox???? Thanks for ANYTHING ya'll can

> suggest!

>

> and Luke

>

>

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

>

>

[Guest guest]

,

He did have the vaccine so I am hoping that it works for him as I am

really have doctor troubles here. No actually, that is just to mild

of a description.....I am beginning to wonder if ANY of the doctors

in this town went to REAL medical school and if they ALL hire their

staff from the medical staff pool from HELL!!! Bad day here between

me and doctors if you can't tell.....actually doctors staff since I

can't ever seem to GET a doctor!!!

>

> > Once again, I am posting in time of need. Once again here is a

short

> > history...... Luke is now 6. Diagnosed with mito myopathy (that

is

> > ALL the diagnosis we got at the time...can you believe I actually

> > thought that was a FULL diagnosis!) when he was 9 months old

from a

> > frozen muscle/nerve biopsy. Since he was a little over a year he

has

> > caught up in all areas that he was originally lagging (they

> > originally expected him to be cognitavely and physically

challenged)

> > and is pretty much " normal " other than huge appetite for his

slight

> > 50 lb frame and requiring more sleep than normal. Although he

does

> > have an eye that ever so slightly turns in when tired or run down.

> > Last summer we did have an episode when we were at the little

league

> > fields where he was fine one minute and then pale, blue around the

> > lips, lethargic and seizure like the next. A few hours late (by

the

> > time we were saw in the ER) he was better although extrememly

hard to

> > arouse. Went back to all the specialties and he pretty much got a

> > clean bill of health.

> >

> > And then we have today. This morning Luke came upstairs and was

> > sweating around his hair line with sweat running down his cheek.

I

> > asked him what he had been doing (we live in Nebraska now and the

> > house is cool) as I was wondering why he was sweating and he said

> > playing XBox. He was also very palid. I took his temp and it was

> > about 97.....he also always runs about 97.6 to 98. Thirty minutes

> > later I was making his lunch and he pretty much just shut down and

> > went fast asleep sprawled out on the kitchen floor. He slept for

> > about 2 hours. Upon waking he was very pale with white lips and

> > draggy looking...took his temperature again and this time the

mercury

> > in the glass thermometer dropped all the way to where you couldn't

> > see it so his temperature was probably around 96. Got very

> > concerned...gave him a glass of koolaid and after drinking about

half

> > he immediately perked up in both color and activity. I am

thinking I

> > should call the doctor here, but since we are pretty new here I

don't

> > have a lot of trust in them so wonder if there is anyone that has

any

> > idea what could be going on with him and what I should do or ask

them

> > to look for. I am worried he may " crash " one of these times....

> >

> > To make matters worse......except for my oldest son who actually

GOT

> > the chicken poxs my other 4 have gotten the chicken pox

> > immunization. Well low and behold my 2 year old appears to be

> > breaking out in the chicken pox today after her playmate (who all

my

> > children were exposed to) began breaking out on Friday. I am

worried

> > that he may too get the chicken pox....is there any increased

risk of

> > him getting them if he does??? Anyone else here have kids with

mito

> > that have gotten the chicken pox???? Thanks for ANYTHING ya'll

can

> > suggest!

> >

> > and Luke

> >

> >

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

> >

> >

[Guest guest]

> And then we have today. This morning Luke came upstairs and was

> sweating around his hair line with sweat running down his cheek. I

> asked him what he had been doing (we live in Nebraska now and the

> house is cool) as I was wondering why he was sweating and he said

> playing XBox. He was also very palid. I took his temp and it was

> about 97.....he also always runs about 97.6 to 98. Thirty minutes

> later I was making his lunch and he pretty much just shut down and

> went fast asleep sprawled out on the kitchen floor. He slept for

> about 2 hours. Upon waking he was very pale with white lips and

> draggy looking...took his temperature again and this time the mercury

> in the glass thermometer dropped all the way to where you couldn't

> see it so his temperature was probably around 96.

,

As far as the sweating and low temps, I was having the same problem with

my daughter Jessalyn a few weeks ago. She was sweating all the time, and at

first I thought it was just because the weather is starting to warm up some

and I supposed she was going to be one of those kids who have a great deal

of trouble regulating their body temp. Her sweating got worse and I checked

her temp several times and it was 96 to 96.5 each time. She also became

extremely constipated and finally I realized that she had gained a couple of

pounds in the last month and her carnitor dose was no longer sufficient. I

ran the idea of increasing her dose by her geneticist, but he didn't think

it was necessary. I did it anyway - I went all the way up to her max dose

and the sweats stopped and no more constipation. So, if Luke is on

Carnitor, you may want to consider increasing the dose. I would definitely

check with a doctor or someone other than me. I'm still pretty new to mito.

In fact, I guess I'm right where you were when Luke was 9 mos.

Mitochondrial myopathy is all they have on Jessalyn as well. It's nice to

hear that Luke's condition improved and his health has been basically ok. I

sometimes (constantly really) worry that Jess will never get any better.

She is very delayed now but because of kids like Luke I hang on to the hope

that she will start to make progress soon. I hope you figure things out

with Luke and my fingers are crossed that chicken pox doesn't come his way!

from Maine

Mom to: Johanna (6 yrs), Jareb (2 yrs), and Jessalyn age 8 months

w/mitochondrial myopathy, fundo and g-tube, severe GI pain of unknown

origin, developmental delay, sensory integration issues, scoliosis, and a

possible seizure disorder

[Guest guest]

> And then we have today. This morning Luke came upstairs and was

> sweating around his hair line with sweat running down his cheek. I

> asked him what he had been doing (we live in Nebraska now and the

> house is cool) as I was wondering why he was sweating and he said

> playing XBox. He was also very palid. I took his temp and it was

> about 97.....he also always runs about 97.6 to 98. Thirty minutes

> later I was making his lunch and he pretty much just shut down and

> went fast asleep sprawled out on the kitchen floor. He slept for

> about 2 hours. Upon waking he was very pale with white lips and

> draggy looking...took his temperature again and this time the mercury

> in the glass thermometer dropped all the way to where you couldn't

> see it so his temperature was probably around 96.

,

As far as the sweating and low temps, I was having the same problem with

my daughter Jessalyn a few weeks ago. She was sweating all the time, and at

first I thought it was just because the weather is starting to warm up some

and I supposed she was going to be one of those kids who have a great deal

of trouble regulating their body temp. Her sweating got worse and I checked

her temp several times and it was 96 to 96.5 each time. She also became

extremely constipated and finally I realized that she had gained a couple of

pounds in the last month and her carnitor dose was no longer sufficient. I

ran the idea of increasing her dose by her geneticist, but he didn't think

it was necessary. I did it anyway - I went all the way up to her max dose

and the sweats stopped and no more constipation. So, if Luke is on

Carnitor, you may want to consider increasing the dose. I would definitely

check with a doctor or someone other than me. I'm still pretty new to mito.

In fact, I guess I'm right where you were when Luke was 9 mos.

Mitochondrial myopathy is all they have on Jessalyn as well. It's nice to

hear that Luke's condition improved and his health has been basically ok. I

sometimes (constantly really) worry that Jess will never get any better.

She is very delayed now but because of kids like Luke I hang on to the hope

that she will start to make progress soon. I hope you figure things out

with Luke and my fingers are crossed that chicken pox doesn't come his way!

from Maine

Mom to: Johanna (6 yrs), Jareb (2 yrs), and Jessalyn age 8 months

w/mitochondrial myopathy, fundo and g-tube, severe GI pain of unknown

origin, developmental delay, sensory integration issues, scoliosis, and a

possible seizure disorder

[Guest guest]

Hailey (3 yrs) also gets very sweaty, yet her temp will be in the 96 range,

pale or blotchy red skin.

Kerry

mykidzx5 wrote:

:

Thank you for the note. Luke is not on anything.....no meds,

no

cocktails, nothing more than a multivitamin. Still battling

to just

get docs to SEE me in this town when there is a need vs telling

me I

need to make an appointment (for several days away) or need to

go to

a family pract doc or the er....good grief! I wish for everyone

the

improvements and stability that Luke has acquired since that first

year struggle......with the added bonus of ANSWERS of course!

My

thoughts are with you and Jess and hope that you will see marked

improvements and strengths as she grows older.

and Luke

>

> > And then we have today. This morning Luke came upstairs

and was

> > sweating around his hair line with sweat running down his cheek.

I

> > asked him what he had been doing (we live in Nebraska now and

the

> > house is cool) as I was wondering why he was sweating and he

said

> > playing XBox. He was also very palid. I took his

temp and it was

> > about 97.....he also always runs about 97.6 to 98. Thirty

minutes

> > later I was making his lunch and he pretty much just shut down

and

> > went fast asleep sprawled out on the kitchen floor. He

slept for

> > about 2 hours. Upon waking he was very pale with white

lips and

> > draggy looking...took his temperature again and this time the

mercury

> > in the glass thermometer dropped all the way to where you couldn't

> > see it so his temperature was probably around 96.

>

>

> ,

>

> As far as the sweating and low temps,

I was having the same

problem with

> my daughter Jessalyn a few weeks ago. She was sweating

all the

time, and at

> first I thought it was just because the weather is starting to

warm

up some

> and I supposed she was going to be one of those kids who have

a

great deal

> of trouble regulating their body temp. Her sweating got

worse and

I checked

> her temp several times and it was 96 to 96.5 each time.

She also

became

> extremely constipated and finally I realized that she had gained

a

couple of

> pounds in the last month and her carnitor dose was no longer

sufficient. I

> ran the idea of increasing her dose by her geneticist, but he

didn't think

> it was necessary. I did it anyway - I went all the way

up to her

max dose

> and the sweats stopped and no more constipation. So, if

Luke is on

> Carnitor, you may want to consider increasing the dose.

I would

definitely

> check with a doctor or someone other than me. I'm still

pretty new

to mito.

> In fact, I guess I'm right where you were when Luke was 9 mos.

> Mitochondrial myopathy is all they have on Jessalyn as well.

It's

nice to

> hear that Luke's condition improved and his health has been

basically ok. I

> sometimes (constantly really) worry that Jess will never get

any

better.

> She is very delayed now but because of kids like Luke I hang

on to

the hope

> that she will start to make progress soon. I hope you figure

things out

> with Luke and my fingers are crossed that chicken pox doesn't

come

his way!

>

> from Maine

>

> Mom to: Johanna (6 yrs), Jareb (2 yrs), and Jessalyn age

8 months

> w/mitochondrial myopathy, fundo and g-tube, severe GI pain of

unknown

> origin, developmental delay, sensory integration issues, scoliosis,

and a

> possible seizure disorder

Please contact mito-owner with any problems or questions.

[Guest guest]

Hailey (3 yrs) also gets very sweaty, yet her temp will be in the 96 range,

pale or blotchy red skin.

Kerry

mykidzx5 wrote:

:

Thank you for the note. Luke is not on anything.....no meds,

no

cocktails, nothing more than a multivitamin. Still battling

to just

get docs to SEE me in this town when there is a need vs telling

me I

need to make an appointment (for several days away) or need to

go to

a family pract doc or the er....good grief! I wish for everyone

the

improvements and stability that Luke has acquired since that first

year struggle......with the added bonus of ANSWERS of course!

My

thoughts are with you and Jess and hope that you will see marked

improvements and strengths as she grows older.

and Luke

>

> > And then we have today. This morning Luke came upstairs

and was

> > sweating around his hair line with sweat running down his cheek.

I

> > asked him what he had been doing (we live in Nebraska now and

the

> > house is cool) as I was wondering why he was sweating and he

said

> > playing XBox. He was also very palid. I took his

temp and it was

> > about 97.....he also always runs about 97.6 to 98. Thirty

minutes

> > later I was making his lunch and he pretty much just shut down

and

> > went fast asleep sprawled out on the kitchen floor. He

slept for

> > about 2 hours. Upon waking he was very pale with white

lips and

> > draggy looking...took his temperature again and this time the

mercury

> > in the glass thermometer dropped all the way to where you couldn't

> > see it so his temperature was probably around 96.

>

>

> ,

>

> As far as the sweating and low temps,

I was having the same

problem with

> my daughter Jessalyn a few weeks ago. She was sweating

all the

time, and at

> first I thought it was just because the weather is starting to

warm

up some

> and I supposed she was going to be one of those kids who have

a

great deal

> of trouble regulating their body temp. Her sweating got

worse and

I checked

> her temp several times and it was 96 to 96.5 each time.

She also

became

> extremely constipated and finally I realized that she had gained

a

couple of

> pounds in the last month and her carnitor dose was no longer

sufficient. I

> ran the idea of increasing her dose by her geneticist, but he

didn't think

> it was necessary. I did it anyway - I went all the way

up to her

max dose

> and the sweats stopped and no more constipation. So, if

Luke is on

> Carnitor, you may want to consider increasing the dose.

I would

definitely

> check with a doctor or someone other than me. I'm still

pretty new

to mito.

> In fact, I guess I'm right where you were when Luke was 9 mos.

> Mitochondrial myopathy is all they have on Jessalyn as well.

It's

nice to

> hear that Luke's condition improved and his health has been

basically ok. I

> sometimes (constantly really) worry that Jess will never get

any

better.

> She is very delayed now but because of kids like Luke I hang

on to

the hope

> that she will start to make progress soon. I hope you figure

things out

> with Luke and my fingers are crossed that chicken pox doesn't

come

his way!

>

> from Maine

>

> Mom to: Johanna (6 yrs), Jareb (2 yrs), and Jessalyn age

8 months

> w/mitochondrial myopathy, fundo and g-tube, severe GI pain of

unknown

> origin, developmental delay, sensory integration issues, scoliosis,

and a

> possible seizure disorder

Please contact mito-owner with any problems or questions.

[Guest guest]

and Luke,

Lochie was exposed to chicken pox and was given immunoglobulins to help

stave it off - it worked! All other kids got them but not him!

Donna.

Low Temps, sweats, and pale...

> Once again, I am posting in time of need. Once again here is a short

> history...... Luke is now 6. Diagnosed with mito myopathy (that is

> ALL the diagnosis we got at the time...can you believe I actually

> thought that was a FULL diagnosis!) when he was 9 months old from a

> frozen muscle/nerve biopsy. Since he was a little over a year he has

> caught up in all areas that he was originally lagging (they

> originally expected him to be cognitavely and physically challenged)

> and is pretty much " normal " other than huge appetite for his slight

> 50 lb frame and requiring more sleep than normal. Although he does

> have an eye that ever so slightly turns in when tired or run down.

> Last summer we did have an episode when we were at the little league

> fields where he was fine one minute and then pale, blue around the

> lips, lethargic and seizure like the next. A few hours late (by the

> time we were saw in the ER) he was better although extrememly hard to

> arouse. Went back to all the specialties and he pretty much got a

> clean bill of health.

>

> And then we have today. This morning Luke came upstairs and was

> sweating around his hair line with sweat running down his cheek. I

> asked him what he had been doing (we live in Nebraska now and the

> house is cool) as I was wondering why he was sweating and he said

> playing XBox. He was also very palid. I took his temp and it was

> about 97.....he also always runs about 97.6 to 98. Thirty minutes

> later I was making his lunch and he pretty much just shut down and

> went fast asleep sprawled out on the kitchen floor. He slept for

> about 2 hours. Upon waking he was very pale with white lips and

> draggy looking...took his temperature again and this time the mercury

> in the glass thermometer dropped all the way to where you couldn't

> see it so his temperature was probably around 96. Got very

> concerned...gave him a glass of koolaid and after drinking about half

> he immediately perked up in both color and activity. I am thinking I

> should call the doctor here, but since we are pretty new here I don't

> have a lot of trust in them so wonder if there is anyone that has any

> idea what could be going on with him and what I should do or ask them

> to look for. I am worried he may " crash " one of these times....

>

> To make matters worse......except for my oldest son who actually GOT

> the chicken poxs my other 4 have gotten the chicken pox

> immunization. Well low and behold my 2 year old appears to be

> breaking out in the chicken pox today after her playmate (who all my

> children were exposed to) began breaking out on Friday. I am worried

> that he may too get the chicken pox....is there any increased risk of

> him getting them if he does??? Anyone else here have kids with mito

> that have gotten the chicken pox???? Thanks for ANYTHING ya'll can

> suggest!

>

> and Luke

>

>

>

>

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

>

>

[Guest guest]

and Luke,

Lochie was exposed to chicken pox and was given immunoglobulins to help

stave it off - it worked! All other kids got them but not him!

Donna.

Low Temps, sweats, and pale...

> Once again, I am posting in time of need. Once again here is a short

> history...... Luke is now 6. Diagnosed with mito myopathy (that is

> ALL the diagnosis we got at the time...can you believe I actually

> thought that was a FULL diagnosis!) when he was 9 months old from a

> frozen muscle/nerve biopsy. Since he was a little over a year he has

> caught up in all areas that he was originally lagging (they

> originally expected him to be cognitavely and physically challenged)

> and is pretty much " normal " other than huge appetite for his slight

> 50 lb frame and requiring more sleep than normal. Although he does

> have an eye that ever so slightly turns in when tired or run down.

> Last summer we did have an episode when we were at the little league

> fields where he was fine one minute and then pale, blue around the

> lips, lethargic and seizure like the next. A few hours late (by the

> time we were saw in the ER) he was better although extrememly hard to

> arouse. Went back to all the specialties and he pretty much got a

> clean bill of health.

>

> And then we have today. This morning Luke came upstairs and was

> sweating around his hair line with sweat running down his cheek. I

> asked him what he had been doing (we live in Nebraska now and the

> house is cool) as I was wondering why he was sweating and he said

> playing XBox. He was also very palid. I took his temp and it was

> about 97.....he also always runs about 97.6 to 98. Thirty minutes

> later I was making his lunch and he pretty much just shut down and

> went fast asleep sprawled out on the kitchen floor. He slept for

> about 2 hours. Upon waking he was very pale with white lips and

> draggy looking...took his temperature again and this time the mercury

> in the glass thermometer dropped all the way to where you couldn't

> see it so his temperature was probably around 96. Got very

> concerned...gave him a glass of koolaid and after drinking about half

> he immediately perked up in both color and activity. I am thinking I

> should call the doctor here, but since we are pretty new here I don't

> have a lot of trust in them so wonder if there is anyone that has any

> idea what could be going on with him and what I should do or ask them

> to look for. I am worried he may " crash " one of these times....

>

> To make matters worse......except for my oldest son who actually GOT

> the chicken poxs my other 4 have gotten the chicken pox

> immunization. Well low and behold my 2 year old appears to be

> breaking out in the chicken pox today after her playmate (who all my

> children were exposed to) began breaking out on Friday. I am worried

> that he may too get the chicken pox....is there any increased risk of

> him getting them if he does??? Anyone else here have kids with mito

> that have gotten the chicken pox???? Thanks for ANYTHING ya'll can

> suggest!

>

> and Luke

>

>

>

>

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

>

>