RE: Re: Lynne- strokes w/ viruses & etc.

[Guest guest]

Darla-

Where can I find the article on Cohen and children with mito on viruses that you mention below. Checked the umdf website but did not see it easily. Do you know where I can find it?? thanks.

Suzanne

Mom to Zoe, 2 years old, working diagnosis mito, unknown type

Re: Lynne- strokes w/ viruses & etc.

Zipporrah was checked for vascular problems with a MRA but all looked ok at the time. Luke will have a MRA with the MRI as well just to be sure. The Adult reumotologist believes Mito caused the vasculitis so that makes me somewhat more worried about the possibility of some of my other kids developing it down the road, so we will be careful to scan for it when they have MRI's.

Definitely strokes and the migraines happen when the girls have virus symptoms. Some of the colds are bad but many of them are just low fevers with drippy noses, very minor, so it is very frustrating when they have a stroke from such a small virus. Dr. Cohen has a good article on how to treat viruses in Mito children that talked about metabolic strokes happening from inflammation caused by fevers and etc. So even low fevers for Mito kids can cause problems! Our kid's viruses very clearly trigger the episodes! The worse the virus, the worse the outcome of the stroke seems to be. The docs told us bacterial infections would be the worst for our kids. Almost every single virus Asenath has had has caused a stroke, some small, some larger. Zipporrah seems to be following the same pattern with two upper respiratory infections causing two strokes and small fevers with drippy noses causing two very small episodes.

Wouldn't it be nice to just have healthy children; a normal lifestyle? I remember three or four years ago worrying about my kids' colds more because it made them feel miserable and clingy, but now, every virus is an assumed stroke to come. Most people couldn't imagine how routinely we expect strokes. Obviously we are concerned and know they can cause devastating results or even death, but it happens so often in our home, it is as if they are the norm for life. Strokes aren't just little viruses, but they seem to occur just as if they were.

I would definitely check more into the metabolic acidosis issue. Asenath has had that issue almost constantly since we first saw Dr. Whiteman and was one of her foremost problems he discovered. It throws off the blood system and can cause major organ failure. That plus the Carnitine deficiency was what we believe caused her to have continual migraines before seeing him. He immediately placed Asenath on Citra 3 and Carnitine and after only three days her 9 week straight migraine reduced in the level of pain 10 fold. She went from moaning and whining and rolling around on the ground all day to smiling for the first time in over three months. We were and still are amazed no other doctor could do simple blood work to reveal those issues and to help her. Dr. Whiteman is our hero! Acidosis issues are very common in Mito. Asenath tends to be metabolically acidotic and Zipporrah, as well as myself, has been found to have lactic acidosis at times.

I have so much on my mind to discuss with the neurologist and geneticist at the end of the month. I need to write them all down so I can come prepared mentally and get some answers to all the things I am thinking about. I will definitely keep you updated as I know your son is so much like my kids. Take care of yourself!

Darla

Re: Re: Lynne- About Luke: migraine & paralysis

Wow, you seem to have read most of the same stuff as me, and thensome. I have only found the same info about hemiplegic migraine as you(ie, lasting damage only happens if there is a stroke), which is why Idon't think Jericho has that. He too has lasting damage, though hisonly occurs if he has an episode that lasts a week or longer. And henever has pain in his head. Plus his MRI's haven't shown evidence of astroke. Sorry I can't help more with the symptoms after migraine, asmigraine was only something being considered for Jericho's case, and westill don't know what he has. As for Luke's mission - it's funny but I had a good feeling about ittoo. I'm glad you are letting him go. I hope the other kids' migraines will respond to something, and turnout okay. Have any of your other kids been checked for vasculitis? On another topic - you have mentioned in the past that Asenath andZipporrah have strokes when they get viruses. That is something that iscoming up now, with Jericho's ped. She thinks he may be getting virusesthat are triggering many of these episodes, even though he doesn't get arunny nose or fever usually. That would make sense, since he never getssick during cold/flu seasons, but he often has episodes then. Oddlyenough though, the times he does get cold symptoms, it is always milderthan what everyone else has got, and even if he is having neuro symptomsbefore and after the cold symptoms, they stop during the cold symptoms. My impression is that when Asenath and Zipporrah get colds or flu,they are really sick from the cold symptoms too, not just the neurosymptoms. Jericho's ped had me make up a chart of his labs, and I discoveredin some records that Jericho had metabolic acidosis a year and a halfago. He was sick but had no fever, and had neuro symptoms during that.I need to talk to his ped to find out more about that. She has ordered more comprehensive labwork to be done the next timehe is ataxic or has a cold symptoms with a fever (which is rare, sowe'll probably be going when he has ataxia). Good luck, I hope we both get more answers soon.Lynne

[Guest guest]

Please ask the docs about seizure-related hemiplegia. Our son at

2-plus was paralyzed on his right side for a week before they tried Dilantin

-- he started moving five minutes later. (Of course, a week's

seizure caused some damage...)

p.

Darla Klein wrote:

Zipporrah was checked

for vascular problems with a MRA but all looked ok at the time. Luke

will have a MRA with the MRI as well just to be sure. The Adult reumotologist

believes Mito caused the vasculitis so that makes me somewhat more worried

about the possibility of some of my other kids developing it down the road,

so we will be careful to scan for it when they have MRI's.

Definitely strokes and the migraines happen when the girls have virus symptoms.

Some of the colds are bad but many of them are just low fevers with drippy

noses, very minor, so it is very frustrating when they have a stroke from

such a small virus. Dr. Cohen has a good article on how to treat

viruses in Mito children that talked about metabolic strokes happening

from inflammation caused by fevers and etc. So even low fevers for

Mito kids can cause problems! Our kid's viruses very clearly trigger

the episodes! The worse the virus, the worse the outcome of the stroke

seems to be. The docs told us bacterial infections would be the worst

for our kids. Almost every single virus Asenath has had has caused

a stroke, some small, some larger. Zipporrah seems to be following

the same pattern with two upper respiratory infections causing two strokes

and small fevers with drippy noses causing two very small episodes.

Wouldn't it be nice to just have healthy children; a normal lifestyle?

I remember three or four years ago worrying about my kids' colds more because

it made them feel miserable and clingy, but now, every virus is an assumed

stroke to come. Most people couldn't imagine how routinely we expect

strokes. Obviously we are concerned and know they can cause devastating

results or even death, but it happens so often in our home, it is as if

they are the norm for life. Strokes aren't just little viruses, but

they seem to occur just as if they were. I would

definitely check more into the metabolic acidosis issue. Asenath

has had that issue almost constantly since we first saw Dr. Whiteman and

was one of her foremost problems he discovered. It throws off the

blood system and can cause major organ failure. That plus the Carnitine

deficiency was what we believe caused her to have continual migraines before

seeing him. He immediately placed Asenath on Citra 3 and Carnitine

and after only three days her 9 week straight migraine reduced in the level

of pain 10 fold. She went from moaning and whining and rolling around

on the ground all day to smiling for the first time in over three months.

We were and still are amazed no other doctor could do simple blood work

to reveal those issues and to help her. Dr. Whiteman is our hero!

Acidosis issues are very common in Mito. Asenath tends to be metabolically

acidotic and Zipporrah, as well as myself, has been found to have lactic

acidosis at times. I have so much on my mind to

discuss with the neurologist and geneticist at the end of the month.

I need to write them all down so I can come prepared mentally and get some

answers to all the things I am thinking about. I will definitely

keep you updated as I know your son is so much like my kids. Take

care of yourself! Darla

Re: Re: Lynne- About

Luke: migraine & paralysis

Wow, you seem to have read most of the same stuff

as me, and then

some.

I have only found the same info about hemiplegic

migraine as you

(ie, lasting damage only happens if there is a stroke), which is why

I

don't think Jericho has that. He too has lasting damage, though

his

only occurs if he has an episode that lasts a week or longer.

And he

never has pain in his head. Plus his MRI's haven't shown evidence

of a

stroke.

Sorry I can't help more with the symptoms after

migraine, as

migraine was only something being considered for Jericho's case, and

we

still don't know what he has.

As for Luke's mission - it's funny but I had a good

feeling about it

too. I'm glad you are letting him go.

I hope the other kids' migraines will respond to

something, and turn

out okay. Have any of your other kids been checked for vasculitis?

On another topic - you have mentioned in the past

that Asenath and

Zipporrah have strokes when they get viruses. That is something

that is

coming up now, with Jericho's ped. She thinks he may be getting

viruses

that are triggering many of these episodes, even though he doesn't

get a

runny nose or fever usually. That would make sense, since he

never gets

sick during cold/flu seasons, but he often has episodes then.

Oddly

enough though, the times he does get cold symptoms, it is always milder

than what everyone else has got, and even if he is having neuro symptoms

before and after the cold symptoms, they stop during the cold symptoms.

My impression is that when Asenath and Zipporrah

get colds or flu,

they are really sick from the cold symptoms too, not just the neuro

symptoms.

Jericho's ped had me make up a chart of his labs,

and I discovered

in some records that Jericho had metabolic acidosis a year and a half

ago. He was sick but had no fever, and had neuro symptoms during

that.

I need to talk to his ped to find out more about that.

She has ordered more comprehensive labwork to be

done the next time

he is ataxic or has a cold symptoms with a fever (which is rare, so

we'll probably be going when he has ataxia).

Good luck, I hope we both get more answers soon.

Lynne