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mitochondrial brown outs?

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Grace saw Dr. Cohen today, about her recent loss of skills. Thankfully, she has regained most of what she lost, but we were still concerned. Dr. Cohen explained that what happened was a mitochondrial brown out. He explained this in detail, so I do understand the basic concept. I know this is not a term commonly used around here, so I am interested to hear if anyone else has had experience with this? He did tell me obvious ways to try to avoid them, but he thinks this one was brought on by a virus we may have never even noticed. I am terrified now, because what happens if she gets really sick? It took her almost three months to notice improvement from the last one. If anyone has any more info on this I would appreciate any help. I try to be as informed as possible on everything that happens, or potentially can happen to my little hero. Thanks to everyone here, you are an amazing resource.

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Could you explain more about the " brown out? " How similar to

stroke episodes are they? Viruses are always involved when my girls

have their stroke episodes. I have never heard this term used before.

Darla

> Grace saw Dr. Cohen today, about her recent loss of skills.

Thankfully, she

> has regained most of what she lost, but we were still concerned.

Dr. Cohen

> explained that what happened was a mitochondrial brown out. He

explained this

> in detail, so I do understand the basic concept. I know this is

not a term

> commonly used around here, so I am interested to hear if anyone

else has had

> experience with this? He did tell me obvious ways to try to avoid

them, but he

> thinks this one was brought on by a virus we may have never even

noticed. I am

> terrified now, because what happens if she gets really sick? It

took her

> almost three months to notice improvement from the last one. If

anyone has any

> more info on this I would appreciate any help. I try to be as

informed as

> possible on everything that happens, or potentially can happen to

my little hero.

> Thanks to everyone here, you are an amazing resource.

>

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and Darla,

My son tends to struggle with any illness (but viruses tend to be harder

on him). The term " brown out " does seem to describe Evan's situation

well--not nearly enough energy, but not a total loss of power like a

" black out " . Earlier this spring Evan got strep throat. It has been

over two months, and he is still struggling to recover. In the first

month after his strep, he had two bad falls--a scooter wreck and hitting

his head on the fireplace (this one required two staples), and just when

he was starting to bounce back he tripped and broke his foot.

At first he tried crutches, but it was taking too much energy to haul

his body around. Even using a wheelchair at school zapped his energy.

His school work has been suffering, so today we decided to keep him home

from school and let him rest. There are only 8 days of school left and

I cannot wait for it to be over!!

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,

When we first saw Cohen and got the mito dx he told us

specifically to avoid the stressors. Heat, cold, dehydration, low

blood sugars and anyone who is sick. He said if someone in the room

is sick, leave, if someone is sick don't let them in your house. We

totally abide by this. WE are the people in the bubble. has

mito, bone marrow failure, and immunodef. and she is almost never

sick. When she does get sick, she can start to decline for 2-3wks.

before the full blown illness. She is fatigues, eats and drink less,

is cranky, hands and feat get grey. She honestly does this for 3

wks. before she spikes a fever. No one ever believes me when I say

something isn't right. After the fever comes, it like " Oh my god,

you were right! " When she is sick, she is down and out for a week or

so. The IV d10 does seem to help her. Sometimes after her brown out,

she actually grows and develops better. Like it cleared the way! I

can't explain it.

WE are just so careful. We have always decided that there are

tings we are willing to take risks on. We went ot Disney for MAW and

we were all sick for the next 2 months. We go to see Dora live, and

shows like this. She just began IVIG therapy and we have ventured

out a little more recently. WE don't want something to happen to her

and have not have let her experience life. But we also don't want

her experience cause her end. It is a fine line!

Good luck, Dawn

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