Re: red ear/fever/?DALSMITH please read

[Guest guest]

Kass,

My has this happen to her ears all the time

for no apparent reason. They get so hot and are hot to the touch and she says they are burning her and not to touch them. This has been happening every since I can remember. We also have no explanation.

Blessings!

Horsley

[Guest guest]

Kass,

My has this happen to her ears all the time

for no apparent reason. They get so hot and are hot to the touch and she says they are burning her and not to touch them. This has been happening every since I can remember. We also have no explanation.

Blessings!

Horsley

[Guest guest]

Kass,

My has this happen to her ears all the time

for no apparent reason. They get so hot and are hot to the touch and she says they are burning her and not to touch them. This has been happening every since I can remember. We also have no explanation.

Blessings!

Horsley

[Guest guest]

I was shocked to come here this evening and see this thread. My 6

year old Luke who is diagnosed with unspecified Mito Myopathy

(unspecified because he was diagnosed almost 6 years ago and I was

lucky to get the diagnosis and what info I got) has started having

episodes of these BRIGHT red ears.....I have a picture taken recently

of him sleeping with his ears just BURNING red. Very interesting....

> Kass,

>

> My has this happen to her ears all the time

> for no apparent reason. They get so hot and are hot to the touch

and she says they are burning her and not to touch them. This has

been happening every since I can remember. We also have no

explanation.

> Blessings!

> Horsley

[Guest guest]

I was shocked to come here this evening and see this thread. My 6

year old Luke who is diagnosed with unspecified Mito Myopathy

(unspecified because he was diagnosed almost 6 years ago and I was

lucky to get the diagnosis and what info I got) has started having

episodes of these BRIGHT red ears.....I have a picture taken recently

of him sleeping with his ears just BURNING red. Very interesting....

> Kass,

>

> My has this happen to her ears all the time

> for no apparent reason. They get so hot and are hot to the touch

and she says they are burning her and not to touch them. This has

been happening every since I can remember. We also have no

explanation.

> Blessings!

> Horsley

[Guest guest]

also has bright red ears at times, but I just thought it was the

autonomic dysfunction.

Dena

[Guest guest]

Kass,

's Right ear gets red before seizures as do his cheeks. He also

sometimes gets a Red circle on his Right cheek. One of the neurologist called

them " autonisms " . He has never had them with a fever though.

Interesting in 's case - before we knew what was wrong with him - that

he would always get the red cheeks/ear after eating chocolate or candy with

red dye - then have clusters of seizures. We thought at the time that it was

related to his hyperactivity. Now we know that it was the carbs that he

couldn't metabolize and not a food allergy.

Talk to you soon

Laurel

[Guest guest]

Kass,

's Right ear gets red before seizures as do his cheeks. He also

sometimes gets a Red circle on his Right cheek. One of the neurologist called

them " autonisms " . He has never had them with a fever though.

Interesting in 's case - before we knew what was wrong with him - that

he would always get the red cheeks/ear after eating chocolate or candy with

red dye - then have clusters of seizures. We thought at the time that it was

related to his hyperactivity. Now we know that it was the carbs that he

couldn't metabolize and not a food allergy.

Talk to you soon

Laurel

[Guest guest]

Hi Kass:

Our doctor told us to piggyback with tylenol first and then about three hours

later give the iboprofen. But I would keep an eye on the fever. I know with

Leah if she runs a fever for two days I'm in to the doctor's office.

Understanding about not stressing out the body. Also our metabolic doctor

informed us that if Leah's fever is up there, we give her tylenol and it

comes down, but goes back up again to watch it and then call. Because

something is going on that the Tylenol isn't able to keep down. You may want

to give your doc a call for a heads up situation. Good luck!

N. mom to Leah

Alessia Cowee wrote:

> Kass,

>

> That's pretty high for an older kid. I'd only wait

> an hour or so and if the Tylenol's not working push

> a dose of ibuprofin. It generally works longer

> and takes effect faster than acetaminophin. And it is

> perfectly safe to piggyback doses this way, but only if

> the fever is not coming down with Tylenol.

>

> Good luck!

>

> Warmly,

> Alessia Cowee

>

> Even now, the world is bleedin'

> But feelin' just fine, all numb in our castle

> Where we're always free to choose

> Never free enough to find

> I wish something would break

> Cuz we're runnin' out of time.

> And I am overcome,

> I am overcome.

> Only water in my lungs,

> I am overcome.

>

> Lyrics by Ed Kowalczyk/Sung by Live

>

> We Will Never Forget the Victims, Families, Heroes,

> September 11, 2001

> ~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~

> Alessia Cowee, Children's Writer

> Advisory Committee member, North Central California, SCBWI

> Critique Group Coordinator Yuba County and Points North

> ~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~

>

>

>

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

>

>

[Guest guest]

Hi Kass:

Our doctor told us to piggyback with tylenol first and then about three hours

later give the iboprofen. But I would keep an eye on the fever. I know with

Leah if she runs a fever for two days I'm in to the doctor's office.

Understanding about not stressing out the body. Also our metabolic doctor

informed us that if Leah's fever is up there, we give her tylenol and it

comes down, but goes back up again to watch it and then call. Because

something is going on that the Tylenol isn't able to keep down. You may want

to give your doc a call for a heads up situation. Good luck!

N. mom to Leah

Alessia Cowee wrote:

> Kass,

>

> That's pretty high for an older kid. I'd only wait

> an hour or so and if the Tylenol's not working push

> a dose of ibuprofin. It generally works longer

> and takes effect faster than acetaminophin. And it is

> perfectly safe to piggyback doses this way, but only if

> the fever is not coming down with Tylenol.

>

> Good luck!

>

> Warmly,

> Alessia Cowee

>

> Even now, the world is bleedin'

> But feelin' just fine, all numb in our castle

> Where we're always free to choose

> Never free enough to find

> I wish something would break

> Cuz we're runnin' out of time.

> And I am overcome,

> I am overcome.

> Only water in my lungs,

> I am overcome.

>

> Lyrics by Ed Kowalczyk/Sung by Live

>

> We Will Never Forget the Victims, Families, Heroes,

> September 11, 2001

> ~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~

> Alessia Cowee, Children's Writer

> Advisory Committee member, North Central California, SCBWI

> Critique Group Coordinator Yuba County and Points North

> ~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~

>

>

>

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

>

>

[Guest guest]

Hi Kass:

Our doctor told us to piggyback with tylenol first and then about three hours

later give the iboprofen. But I would keep an eye on the fever. I know with

Leah if she runs a fever for two days I'm in to the doctor's office.

Understanding about not stressing out the body. Also our metabolic doctor

informed us that if Leah's fever is up there, we give her tylenol and it

comes down, but goes back up again to watch it and then call. Because

something is going on that the Tylenol isn't able to keep down. You may want

to give your doc a call for a heads up situation. Good luck!

N. mom to Leah

Alessia Cowee wrote:

> Kass,

>

> That's pretty high for an older kid. I'd only wait

> an hour or so and if the Tylenol's not working push

> a dose of ibuprofin. It generally works longer

> and takes effect faster than acetaminophin. And it is

> perfectly safe to piggyback doses this way, but only if

> the fever is not coming down with Tylenol.

>

> Good luck!

>

> Warmly,

> Alessia Cowee

>

> Even now, the world is bleedin'

> But feelin' just fine, all numb in our castle

> Where we're always free to choose

> Never free enough to find

> I wish something would break

> Cuz we're runnin' out of time.

> And I am overcome,

> I am overcome.

> Only water in my lungs,

> I am overcome.

>

> Lyrics by Ed Kowalczyk/Sung by Live

>

> We Will Never Forget the Victims, Families, Heroes,

> September 11, 2001

> ~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~

> Alessia Cowee, Children's Writer

> Advisory Committee member, North Central California, SCBWI

> Critique Group Coordinator Yuba County and Points North

> ~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~^~~~~~

>

>

>

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

>

>

[Guest guest]

I have a picture taken recently

of him sleeping with his ears just BURNING red. Very interesting....

> Kass,

Hi,

I found this thread interesting as well because my healthy child, Mark, 6, also gets bright red ears from time to time. Usually one or the other, and it will also be hot to the touch. Go figure. My daughter (the mito one) will also get a red ear, but it is always along with hive like splotching all over her face and chest, never just the ear. Hmmmmmmm.....weird.

('s mom)

[Guest guest]

I have a picture taken recently

of him sleeping with his ears just BURNING red. Very interesting....

> Kass,

Hi,

I found this thread interesting as well because my healthy child, Mark, 6, also gets bright red ears from time to time. Usually one or the other, and it will also be hot to the touch. Go figure. My daughter (the mito one) will also get a red ear, but it is always along with hive like splotching all over her face and chest, never just the ear. Hmmmmmmm.....weird.

('s mom)

[Guest guest]

I have a picture taken recently

of him sleeping with his ears just BURNING red. Very interesting....

> Kass,

Hi,

I found this thread interesting as well because my healthy child, Mark, 6, also gets bright red ears from time to time. Usually one or the other, and it will also be hot to the touch. Go figure. My daughter (the mito one) will also get a red ear, but it is always along with hive like splotching all over her face and chest, never just the ear. Hmmmmmmm.....weird.

('s mom)

[Guest guest]

Dena:

You are right to a certain point. The reason I say that is today we had

(our oldest son) Leah's pediatric neurologist regarding headaches.

Anyway, had an EEG and was put out for it and when he came into the

room after sleeping for awhile both of his ears were a bright red and very

warm to the touch. They went back to normal after about 5 minutes. Our

doctor compared it to like when a child falls asleep and starts to sweat;

it's just something that happens and not to worry about it. I just thought

it was so amazing to see this today especially after reading my emails from

yesterday and this morning all about red ears. Something to do with the

autoimmune system he said. So I guess we shouldn't worry about it. Yeah.

N. mom to Leah

waislandgirl@... wrote:

> also has bright red ears at times, but I just thought it was the

> autonomic dysfunction.

>

> Dena

>

>

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

>

>

[Guest guest]

Dena:

You are right to a certain point. The reason I say that is today we had

(our oldest son) Leah's pediatric neurologist regarding headaches.

Anyway, had an EEG and was put out for it and when he came into the

room after sleeping for awhile both of his ears were a bright red and very

warm to the touch. They went back to normal after about 5 minutes. Our

doctor compared it to like when a child falls asleep and starts to sweat;

it's just something that happens and not to worry about it. I just thought

it was so amazing to see this today especially after reading my emails from

yesterday and this morning all about red ears. Something to do with the

autoimmune system he said. So I guess we shouldn't worry about it. Yeah.

N. mom to Leah

waislandgirl@... wrote:

> also has bright red ears at times, but I just thought it was the

> autonomic dysfunction.

>

> Dena

>

>

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

>

>

[Guest guest]

Thanks a ton for all the responses!!! Interesting to see how many have

seen the red ear/s in their kids!!! Atleast I know we are not alone

with this....will have to ask Dr. C next time we see him and see what

his thoughts are on it.

....Chance's look like your pic of Luke, although his are

usually just one ear at a time.

Poor kid is STILL sick and fever got as high as 104.5 at one point

today, but it IS coming down some with the Tylenol/Motrin dosing.

Haven't seen anything below 101 though, but you'd think he was completly

well almost when it gets down to this, he's a mess when its really

high. Still no obvious signs of whats going on with him.....has

complained a couple of times of having a sore throat, but its not

consistently bothering him, and he did vomit once this afternoon, but I

think it was because his fever was so high. I did call the ped this

afternoon and they want to see him tomorrow if he is not better. Really

struggling to get him to drink enough, so we may be looking at some IV

hydration tomorrow if things are not substantially better. Just SO not

used to seeing him like this!!! Thanks a ton for all the support and

info you all shared on this.

BIG hugs,

Kass

[Guest guest]

Thanks so much Laurel for responding!!! I am continually amazed at

how similar our boys histories are!!! This definatly makes me wonder

about the seizure possibility.

I about fell off my chair though when I read your second paragraph........Chance

gets the redness too right after eating things with red dye in them!!!!!!!

We've found that any candies like Star Burst, Jelly Beans, Candy Canes,

etc cause this reaction, as does things like cake frosting. There

are a few other things that didn't seem to correlate with the chewy and/or

dye issues, so we were not real sure what was going on.....assumed it was

allergies of some kind. Chance gets spacy, less social than he already

is, and wanders aimlessly, and is more active right after eating these

things....does that sound familiar?? Just shocked me to read such

a similar reaction since I haven't ever read of anyone else that saw this

particular response!!! WOW!!

Thanks a ton for sharing with me hun.......it means alot to me to have

someone to talk to that has a child with so many similarities.

BIG hugs,

Kass

Dalsmith@... wrote:

Kass,

's Right ear gets red before seizures as do his cheeks. He

also

sometimes gets a Red circle on his Right cheek. One of the neurologist

called

them "autonisms". He has never had them with a fever though.

Interesting in 's case - before we knew what was wrong with

him - that

he would always get the red cheeks/ear after eating chocolate or

candy with

red dye - then have clusters of seizures. We thought at the

time that it was

related to his hyperactivity. Now we know that it was the

carbs that he

couldn't metabolize and not a food allergy.

Talk to you soon

Laurel

[Guest guest]

My son has diagnosis of autism, and they found a mtDNA mutation for LHON. It is a secondary mutation, but they figure there is a primary, just not sure what yet, and it may be one they do not have the knowledge/technology to find. Have not had biopsy yet - soon.

He does react badly to almost all dyes and they are in everything. but also high fructose corn syrup is a disaster and it is in almost everything in a box or can in the store. (we do not buy any of that cr*p anymore). These things also turn my 'normal' daughter into Mr. Hyde.

I would have thought that doctors would have spoken with parents of mito kids regarding the different sugars that are in food, as glucose metabolism is a factor in many mitos, isn't it?

cara

we have plenty of food in the US, but all the processed stuff is worthless at best

even the stuff they label enriched - so they take out 90% vitamin and mineral content in processing and put back in 10% and call it 'enriched'?!

also 'natural flavors' is often another way of saying MSG - monosodium glutamate

Re: red ear/fever/?DALSMITH please read

Thanks so much Laurel for responding!!! I am continually amazed at how similar our boys histories are!!! This definatly makes me wonder about the seizure possibility. I about fell off my chair though when I read your second paragraph........Chance gets the redness too right after eating things with red dye in them!!!!!!! We've found that any candies like Star Burst, Jelly Beans, Candy Canes, etc cause this reaction, as does things like cake frosting. There are a few other things that didn't seem to correlate with the chewy and/or dye issues, so we were not real sure what was going on.....assumed it was allergies of some kind. Chance gets spacy, less social than he already is, and wanders aimlessly, and is more active right after eating these things....does that sound familiar?? Just shocked me to read such a similar reaction since I haven't ever read of anyone else that saw this particular response!!! WOW!! Thanks a ton for sharing with me hun.......it means alot to me to have someone to talk to that has a child with so many similarities. BIG hugs, Kass Dalsmith@... wrote: Kass, 's Right ear gets red before seizures as do his cheeks. He also sometimes gets a Red circle on his Right cheek. One of the neurologist called them "autonisms". He has never had them with a fever though. Interesting in 's case - before we knew what was wrong with him - that he would always get the red cheeks/ear after eating chocolate or candy with red dye - then have clusters of seizures. We thought at the time that it was related to his hyperactivity. Now we know that it was the carbs that he couldn't metabolize and not a food allergy. Talk to you soon LaurelPlease contact mito-owner with any problems or questions.

[Guest guest]

Kass:

Could Chance have the flu? Flu is usually high fever, achiness and I believe

a sore throat. What some people call the flu (with throwing up and such) is

not technically the flu. One way for them to know this is I believe with a

lab test. I hope you get answers. Also when the fever gets that high,

besides the tylenol stuff, have Chance get in a lukewarm tub. He will get

goosebumps, and it is only for around 10 minutes, but that brings the fever

down quicker. It worked for my son (who does not have mito). When

he was around 2 and 3 years old I would sit in the tub with him and play.

The ten minutes go fast and it really, really works.

N. mom to Leah

Kass wrote:

> Thanks a ton for all the responses!!! Interesting to see how many have

> seen the red ear/s in their kids!!! Atleast I know we are not alone

> with this....will have to ask Dr. C next time we see him and see what

> his thoughts are on it.

>

> ....Chance's look like your pic of Luke, although his are

> usually just one ear at a time.

>

> Poor kid is STILL sick and fever got as high as 104.5 at one point

> today, but it IS coming down some with the Tylenol/Motrin dosing.

> Haven't seen anything below 101 though, but you'd think he was completly

> well almost when it gets down to this, he's a mess when its really

> high. Still no obvious signs of whats going on with him.....has

> complained a couple of times of having a sore throat, but its not

> consistently bothering him, and he did vomit once this afternoon, but I

> think it was because his fever was so high. I did call the ped this

> afternoon and they want to see him tomorrow if he is not better. Really

> struggling to get him to drink enough, so we may be looking at some IV

> hydration tomorrow if things are not substantially better. Just SO not

> used to seeing him like this!!! Thanks a ton for all the support and

> info you all shared on this.

>

> BIG hugs,

> Kass

>

>

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

>

>

[Guest guest]

Thanks a ton :-)

Flu is definatly possible. Still not showing any symptoms of anything

but fevers continue to get high. Tylenol is bringing them down though,

and we have managed to make it through today better, so hopefully he is

on the mend. We're all really ready for him to feel better already!!

Actually, in talking with the nurse at the local Children's hospital

here (they have a call in program when there are questions) the nurse said

they are now NOT recommending even luke warm baths because it causes the

children to shiver which oftentimes makes the fever actually go higher.

Thought it was interesting because I had always heard about the luke warm

baths too!! I imagine it works alot of times too, but there is the

risk of making it go higher, so they are now not recommending it.

Always changing huh!!?? LOL

Thanks for the ideas and support!!

BIG hugs,

Kass

PS...non-mito prayers are needed over here if anyone has any to spare.......DH

is at the hospital as I type with what appears to be a blockage of his

Ileostomy (he has Crohn's disease and lost all of his large intestine and

part of the small 12 years ago now). Docs don't think its a food

blockage but that his intestine has prolapsed, which would mean surgury

to repair it and DH does not do well with surgury (either mentally OR physically).

So we need some prayers that this can somehow be fixed without too many

difficulties!!! Thanks a ton!!!

Sorensen wrote:

Kass:

Could Chance have the flu? Flu is usually high fever, achiness

and I believe

a sore throat. What some people call the flu (with throwing

up and such) is

not technically the flu. One way for them to know this is

I believe with a

lab test. I hope you get answers. Also when the fever

gets that high,

besides the tylenol stuff, have Chance get in a lukewarm tub.

He will get

goosebumps, and it is only for around 10 minutes, but that brings

the fever

down quicker. It worked for my son (who does not

have mito). When

he was around 2 and 3 years old I would sit in the tub with him

and play.

The ten minutes go fast and it really, really works.

N. mom to Leah

Kass wrote:

> Thanks a ton for all the responses!!! Interesting to see

how many have

> seen the red ear/s in their kids!!! Atleast I know we are

not alone

> with this....will have to ask Dr. C next time we see him and

see what

> his thoughts are on it.

>

> ....Chance's look like your pic of Luke, although his

are

> usually just one ear at a time.

>

> Poor kid is STILL sick and fever got as high as 104.5 at one

point

> today, but it IS coming down some with the Tylenol/Motrin dosing.

> Haven't seen anything below 101 though, but you'd think he was

completly

> well almost when it gets down to this, he's a mess when its really

> high. Still no obvious signs of whats going on with him.....has

> complained a couple of times of having a sore throat, but its

not

> consistently bothering him, and he did vomit once this afternoon,

but I

> think it was because his fever was so high. I did call

the ped this

> afternoon and they want to see him tomorrow if he is not better.

Really

> struggling to get him to drink enough, so we may be looking at

some IV

> hydration tomorrow if things are not substantially better.

Just SO not

> used to seeing him like this!!! Thanks a ton for all the

support and

> info you all shared on this.

>

> BIG hugs,

> Kass

>

>

> Please contact mito-owner with any problems or

questions.

>

>

[Guest guest]

Will keep DH in our thoughts and prayers. We need all of that good

positive stuff even nonmito related. Also thanks for educating me

on the lukewarm baths. Some times you wish they would all develop

the same information and not keep changing it so much. I will keep

that in mind next time one of our kids have a fever like that. I

will also call our local nurse direct call in line and see what they have

to say. We don't want fevers to go higher no matter what our kids

are dealing with. Thanks for the info Kass.

N. mom to Leah

Kass wrote:

Thanks a ton :-)

Flu is definatly possible. Still not showing any symptoms of anything

but fevers continue to get high. Tylenol is bringing them down though,

and we have managed to make it through today better, so hopefully he is

on the mend. We're all really ready for him to feel better already!!

Actually, in talking with the nurse at the local Children's hospital

here (they have a call in program when there are questions) the nurse said

they are now NOT recommending even luke warm baths because it causes the

children to shiver which oftentimes makes the fever actually go higher.

Thought it was interesting because I had always heard about the luke warm

baths too!! I imagine it works alot of times too, but there is the

risk of making it go higher, so they are now not recommending it.

Always changing huh!!?? LOL

Thanks for the ideas and support!!

BIG hugs,

Kass

PS...non-mito prayers are needed over here if anyone has any to spare.......DH

is at the hospital as I type with what appears to be a blockage of his

Ileostomy (he has Crohn's disease and lost all of his large intestine and

part of the small 12 years ago now). Docs don't think its a food

blockage but that his intestine has prolapsed, which would mean surgury

to repair it and DH does not do well with surgury (either mentally OR physically).

So we need some prayers that this can somehow be fixed without too many

difficulties!!! Thanks a ton!!!

Sorensen wrote:

Kass:

Could Chance have the flu? Flu is usually high fever, achiness

and I believe

a sore throat. What some people call the flu (with throwing

up and such) is

not technically the flu. One way for them to know this is

I believe with a

lab test. I hope you get answers. Also when the fever

gets that high,

besides the tylenol stuff, have Chance get in a lukewarm tub.

He will get

goosebumps, and it is only for around 10 minutes, but that brings

the fever

down quicker. It worked for my son (who does not

have mito). When

he was around 2 and 3 years old I would sit in the tub with him

and play.

The ten minutes go fast and it really, really works.

N. mom to Leah

Kass wrote:

> Thanks a ton for all the responses!!! Interesting to see

how many have

> seen the red ear/s in their kids!!! Atleast I know we are

not alone

> with this....will have to ask Dr. C next time we see him and

see what

> his thoughts are on it.

>

> ....Chance's look like your pic of Luke, although his

are

> usually just one ear at a time.

>

> Poor kid is STILL sick and fever got as high as 104.5 at one

point

> today, but it IS coming down some with the Tylenol/Motrin dosing.

> Haven't seen anything below 101 though, but you'd think he was

completly

> well almost when it gets down to this, he's a mess when its really

> high. Still no obvious signs of whats going on with him.....has

> complained a couple of times of having a sore throat, but its

not

> consistently bothering him, and he did vomit once this afternoon,

but I

> think it was because his fever was so high. I did call

the ped this

> afternoon and they want to see him tomorrow if he is not better.

Really

> struggling to get him to drink enough, so we may be looking at

some IV

> hydration tomorrow if things are not substantially better.

Just SO not

> used to seeing him like this!!! Thanks a ton for all the

support and

> info you all shared on this.

>

> BIG hugs,

> Kass

>

>

> Please contact mito-owner with any problems or

questions.

>

>