Turning white as a ghost and getting a headache/doesn't last long??

[Guest guest]

Just a thought off the cuff here...

but I would maybe check his sugar and/or blood pressure too...

deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.com

[Guest guest]

Yesterday at school Joey's kindergarten teacher send Joey to the

nurse because he looked VERY pale. In the nurses office they sat him

down and had him take about 8 long breaths, which brought the color

back to him. Then he seemed to do just fine.

Yet then last night just before bedtime he did it again. This time

he held his head(said his brain hurt). I sat him down and had him

take deep breaths. I could literally see the color return to his

face. And he said his headache went away.

He is not sick at all. No colds, no congestion!!

Should I be concerned? I hate running him to the doctor so often,

since it is cold and flu season. They did dx. him with asthma about

three years ago. Which I do not think he has TRUE asthma, I think

it is all his Laryngiamalasia(sp). And three years ago the

discovered mold in out therapy room at school. So after we moved

him out of there, his weasing went away!

Any help would be GREAT!!!

Thanks!

Tamara(Mommy of Joey almost 6 years old, on the 22nd)

[Guest guest]

Kinda sounds like a migrane to me. Migranes often make you very nausious (sp?) wich could explain his paleness. When Grace gets them she is often very pale and still, she often holds her head. We actually thought the first time she had on that it was a ear infection, since she looked so sick.

She is now on Periactin to prevent them. (It is also used for appetite stimulant and is an antihistamine wich helps with allergies.)

Best wishes

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[Guest guest]

Does he have autonomic issues?

[Guest guest]

Tamara, i couldnt believe when i saw your post, my Matt last Friday

was rushed to the ER, he was at school, gym class turned white as a

ghost is the way the teachers put it, he had dark circles around his

eyes and was lethargic, when asked he said his head hurt they took

him to the nurse, his pulse rate was 150, and his blood pressure was

high too, when he layed down the headache would start going away if

he sat back up it would start in again, they called me and we went

to the ER, they spoke with his pediatrician who gave the ER doc a

crash course in mito, they had a cardiac specialist come to the er

and he did a ekg, (Matt was just to cardiologist at ST s

hosp. 2 weeks ago for ekg and echo which were just fine)cardiologist

and ER doc after speaking with pediatrician about mito conclude that

the migrain headache, pulse and pressure so high, Matt was possibly

heading for a stroke, they said his lactic acids were high, and this

was a full blown mito crash!! To top this all off yesterday,

Tuesday, we got a call from Matts neuro/metobolic specialist who

just got Matts new MRI results and there are 2 new white matter

lesions in his front lobe (he already has 4 lesions in left lobe-

white matter which also spread into his gray matter) they have been

the same no change since age 18 months of age. We've know since

last May that Matt has been going through some progression of mito,

but this has all been a ton of bricks this past week. Tamara call

the doctor everyday if you have too, thats what they are there

for!!! Better to hear that its nothing to worry about, than to

ignore it and find out later its been something all along. I say

dont ignore this because back in May, when this progression started

it was small, it was little things,things i felt the docs would tell

me was nothing, Matt was more tired, (but it was spring and there

were more activities), then summer hit (it was the heat, it was he

has more therapies in the summer and its tiring him out), then he

couldnt peddle his bike anymore, and the small headaches were

getting worse, so i had to call the docs cause i knew those little

signs that were spread out over a 4 month period, and they were

sporatic this was not everyday, became a big something, and now i

look back and wonder if i would have just called right at the

beginning would Matt be going through so much now. God only knows

that answer, but if i had it all to do over, i would and i do now

bug the docs for every little thing, and sometimes its nothing but

ive learned with mito most of the time it is something. Barb

[Guest guest]

>

Hi Tamara,

Collin had the same thing happening to him, and it progressed

with disorientation and dizziness. At night he was having extreme

sleeping issues also. He would turn WHITE or grayish white with or

without activity, and often had headaches. For him it turned out to

be related to high CO2 retention and O2 desaturations, possibly

related with the dysautonomia. We're not quite sure if it is

autonomic related or not. It could also be migraines happening with

Joey. Perhaps just call his mito specialist or neurologist to let

them know, they may want to see you sooner, especially if this

continues. Maybe it will just turn out to be an isolated occurance

with an oncoming virus or something. Blessings, Joni

> Yesterday at school Joey's kindergarten teacher send Joey to the

> nurse because he looked VERY pale. In the nurses office they sat

him

> down and had him take about 8 long breaths, which brought the color

> back to him. Then he seemed to do just fine.

> Yet then last night just before bedtime he did it again. This time

> he held his head(said his brain hurt). I sat him down and had him

> take deep breaths. I could literally see the color return to his

> face. And he said his headache went away.

> He is not sick at all. No colds, no congestion!!

> Should I be concerned? I hate running him to the doctor so often,

> since it is cold and flu season. They did dx. him with asthma

about

> three years ago. Which I do not think he has TRUE asthma, I think

> it is all his Laryngiamalasia(sp). And three years ago the

> discovered mold in out therapy room at school. So after we moved

> him out of there, his weasing went away!

> Any help would be GREAT!!!

> Thanks!

> Tamara(Mommy of Joey almost 6 years old, on the 22nd)