Re: Ann/ steroids for strokes

[Guest guest]

I agree with you that many call them different things. Strokes,

regressions, crisis's, etc. Our neurologists have told us many things to

clarify the differences and it has really helped us. One important thing

most people do not understand is that you CAN have a stroke without damage

showing on the MRI. Sometimes the damage is too small to see and sometimes

for some reason or other, the brain does not show the problem areas. The

docs have also told us it is an amazing thing how some people with a

devastating MRI showing a stroke will have very little physically wrong with

them and another person with little to no damage seen on MRI could have

terrible symptoms and permanent damage physically, mentally, cognitively,

etc. There are no hardened rules as to what the brain will do. It can be a

frustrating issue to deal with. We have been told symptoms can be a big

help to diagnose a stroke in those instances that the MRI doesn't prove one.

When a person has symptoms for minutes to a day or two it is called a TIA

(transient ischemic attack), when the symptoms last for days to a couple

months it is known as a stroke episode, and the long term affecting ones are

named simply strokes. Many doctors just say stroke or " infarct " rather than

differentiate between the different form because simply they all represent a

form of a stroke. They are all to be taken seriously and if possible the

reason should be found and prevention methods should be used to prohibit

further strokes. Of course in Mito it just isn't very possible to stop them

because of the myriad of issues that can cause damage to the brain.

I think you are wise to maximize energy delivery and minimize the

energy demand. I think it is definitely important to not let the kids

overdue it. Unfortunately for my girls there seems to be no rhyme or reason

for some of their episodes. They usually have them with viruses and

overexertion, but there are also times that there just doesn't seem to be

any reason. I often wonder if there is some hidden virus or something they

are battling that we just don't see. They will often just wake up changed.

No migraine or warning sign, just wake and be worse in some area(s).

Thanks for the advice about the anti-inflammatory meds with no

steroids. I will DEFINITELY ask the docs about that! It might be a great

idea to try. I hate using steroids and yet Asenath has been sooooooo much

better on them than off. Thanks for taking the time to give your

suggestions.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: steroids for strokes

> Darla:

> I have never heard of using steroids to stop the " mito strokes " . That is

> not to say it is not used - I have just not heard that.

>

> My boys have had what has been called strokes but one thing that always

> frustrates me is that there does not seem to be a uniform definition of

> what a " mito stroke " is. What some people call a stroke, others call a bad

> day and what some call a stroke, other people call a crash ....in the

> absence of a clear MRI I just don't think anyone knows enough.

>

> In regards to mito strokes, we have always followed the maximize energy

> delivery and minimize energy demand rule with the boys. In any way that

> we can maximize energy we do: vitamins and supplements, good nutrition,

> enough fluid, address anemia, address pain, provide oxygen if needed, etc.

> We obviously do let them live life to the fullest that they can so even

> with the above but always our premise is energy delivery must equal energy

> demand to the extent that is possible.

>

> If Asenath's strokes are due to inflammation - what about talking with the

> doctors about non steroid anti inflammatory drugs? I suppose another

> question you could ask would be: what about low dose steroids rather than

> the high? or perhaps you could agree to do an MRI in 3 months and see if

> more damage has occurred which might lead all of you to think differently

> about steroids. Would IVIg be helpful for her vasculitis - for some it is?

> I'm just not sure what the answers are but those are some questions you

> might ask.

>

> Anne J.

>

[Guest guest]

I agree with you that many call them different things. Strokes,

regressions, crisis's, etc. Our neurologists have told us many things to

clarify the differences and it has really helped us. One important thing

most people do not understand is that you CAN have a stroke without damage

showing on the MRI. Sometimes the damage is too small to see and sometimes

for some reason or other, the brain does not show the problem areas. The

docs have also told us it is an amazing thing how some people with a

devastating MRI showing a stroke will have very little physically wrong with

them and another person with little to no damage seen on MRI could have

terrible symptoms and permanent damage physically, mentally, cognitively,

etc. There are no hardened rules as to what the brain will do. It can be a

frustrating issue to deal with. We have been told symptoms can be a big

help to diagnose a stroke in those instances that the MRI doesn't prove one.

When a person has symptoms for minutes to a day or two it is called a TIA

(transient ischemic attack), when the symptoms last for days to a couple

months it is known as a stroke episode, and the long term affecting ones are

named simply strokes. Many doctors just say stroke or " infarct " rather than

differentiate between the different form because simply they all represent a

form of a stroke. They are all to be taken seriously and if possible the

reason should be found and prevention methods should be used to prohibit

further strokes. Of course in Mito it just isn't very possible to stop them

because of the myriad of issues that can cause damage to the brain.

I think you are wise to maximize energy delivery and minimize the

energy demand. I think it is definitely important to not let the kids

overdue it. Unfortunately for my girls there seems to be no rhyme or reason

for some of their episodes. They usually have them with viruses and

overexertion, but there are also times that there just doesn't seem to be

any reason. I often wonder if there is some hidden virus or something they

are battling that we just don't see. They will often just wake up changed.

No migraine or warning sign, just wake and be worse in some area(s).

Thanks for the advice about the anti-inflammatory meds with no

steroids. I will DEFINITELY ask the docs about that! It might be a great

idea to try. I hate using steroids and yet Asenath has been sooooooo much

better on them than off. Thanks for taking the time to give your

suggestions.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

Re: steroids for strokes

> Darla:

> I have never heard of using steroids to stop the " mito strokes " . That is

> not to say it is not used - I have just not heard that.

>

> My boys have had what has been called strokes but one thing that always

> frustrates me is that there does not seem to be a uniform definition of

> what a " mito stroke " is. What some people call a stroke, others call a bad

> day and what some call a stroke, other people call a crash ....in the

> absence of a clear MRI I just don't think anyone knows enough.

>

> In regards to mito strokes, we have always followed the maximize energy

> delivery and minimize energy demand rule with the boys. In any way that

> we can maximize energy we do: vitamins and supplements, good nutrition,

> enough fluid, address anemia, address pain, provide oxygen if needed, etc.

> We obviously do let them live life to the fullest that they can so even

> with the above but always our premise is energy delivery must equal energy

> demand to the extent that is possible.

>

> If Asenath's strokes are due to inflammation - what about talking with the

> doctors about non steroid anti inflammatory drugs? I suppose another

> question you could ask would be: what about low dose steroids rather than

> the high? or perhaps you could agree to do an MRI in 3 months and see if

> more damage has occurred which might lead all of you to think differently

> about steroids. Would IVIg be helpful for her vasculitis - for some it is?

> I'm just not sure what the answers are but those are some questions you

> might ask.

>

> Anne J.

>