Can stroke episodes be controlled by steroids?

[Guest guest]

Some of you may have been reading about our concerns about Asenath lately

and I was wondering if Cohen, Shoffner, or any other of the docs have ever

mentioned using steroids to deter/stop stroke episodes from occurring. We

have seen a definite pattern of increased stroke activity both before and

now with the tapering of Asenath's steroids and also know that in Mito

stroke episodes and regressions are often due to inflammation within the

brain. Knowing steroids help to shrink/decrease inflammation as well as

what we have seen in Asenath, makes me wonder how often this has been used

to help other Mito kids. Have any of you used steroids to stop Mito

progression (at least the stroke regression issues)? If you have had

experience using long term high dosage steroid use, did you also see the

steroids being helpful in this area? Pros and cons of continuing steroids

for more than a year? I am wondering if Zipporrah might also be helped by

steroids. I hate the side effects, but if I have to choose between the side

effects and strokes, I think I would choose the side effects! Any advice or

knowledge appreciated, as well as your prayers. It has been a hard month

for both girls.

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)

[Guest guest]

Some of you may have been reading about our concerns about Asenath lately

and I was wondering if Cohen, Shoffner, or any other of the docs have ever

mentioned using steroids to deter/stop stroke episodes from occurring. We

have seen a definite pattern of increased stroke activity both before and

now with the tapering of Asenath's steroids and also know that in Mito

stroke episodes and regressions are often due to inflammation within the

brain. Knowing steroids help to shrink/decrease inflammation as well as

what we have seen in Asenath, makes me wonder how often this has been used

to help other Mito kids. Have any of you used steroids to stop Mito

progression (at least the stroke regression issues)? If you have had

experience using long term high dosage steroid use, did you also see the

steroids being helpful in this area? Pros and cons of continuing steroids

for more than a year? I am wondering if Zipporrah might also be helped by

steroids. I hate the side effects, but if I have to choose between the side

effects and strokes, I think I would choose the side effects! Any advice or

knowledge appreciated, as well as your prayers. It has been a hard month

for both girls.

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)

[Guest guest]

Grace does not suffer from stroke episodes, as your girls do so this may not be helpful to you. She does, however, have alot of regression with illness. As of now she has a protocall for IV fluids with any fever, vomiting or diarreah. Thankfully she rarely gets ill, or we catch it really early (before a fever hits.) With our experience she has yet to regress when she has been admitted for fluids. On the other hand she has always had some sort of regression when I decided to keep her home with a very mild fever. I know your girls seem to get viruses very easy, so it would be very hard for you. Maybe if it worked having a central line would be beneficial. This way you could be trained, along with some nursing care, be able to keep them home and stop the regressions.

Best wishes.

Rock, jazz, country, soul more. Find the music you love on MSN Music!

[Guest guest]

Grace does not suffer from stroke episodes, as your girls do so this may not be helpful to you. She does, however, have alot of regression with illness. As of now she has a protocall for IV fluids with any fever, vomiting or diarreah. Thankfully she rarely gets ill, or we catch it really early (before a fever hits.) With our experience she has yet to regress when she has been admitted for fluids. On the other hand she has always had some sort of regression when I decided to keep her home with a very mild fever. I know your girls seem to get viruses very easy, so it would be very hard for you. Maybe if it worked having a central line would be beneficial. This way you could be trained, along with some nursing care, be able to keep them home and stop the regressions.

Best wishes.

Rock, jazz, country, soul more. Find the music you love on MSN Music!