Re:Suhad/all (the frustration of going from good days to bad issue)

[Guest guest]

>That is what makes this disease so frustrating. It is so

>unpredictable and so deceiving at times. There are days when >everything is

>so smooth and I almost start to believe we are >improving and then BAM, one

>cough and we are down another road. I >understand your frustration.

I am really relating to you on this issue. We have watched Asenath decline

over the last few weeks again. I believe taking her off the steroids in

causing her brain to begin having inflammation problems again and causing

stroke episodes to become regular occurrences again. I absolutely hate

steroids, but think it may be the only way to spot the episodes in both my

girls. Asenath's cognitive skills and mentality has decreased quite a

bit in the last few weeks. Her therapists have noticed as well as us. It

is so sad to see her talking more babyish, having terrible hyperactivity

outbursts when she is frustrated, watching her struggle to remember things

that were easy for her, etc. I know we have been here before and she has

regained things lost before, but it is so horrible to see it again!

Stopping steroids was such a wonderful thought. But now she has apnea

again, snoring, chronic diarrhea, and stroke episodes again. The last day

of steroids is supposed to by tomorrow. Instead of being happy, I am

scared about stopping them.

Do others use steroids to stop stroke episodes? What do your docs do???

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]

>That is what makes this disease so frustrating. It is so

>unpredictable and so deceiving at times. There are days when >everything is

>so smooth and I almost start to believe we are >improving and then BAM, one

>cough and we are down another road. I >understand your frustration.

I am really relating to you on this issue. We have watched Asenath decline

over the last few weeks again. I believe taking her off the steroids in

causing her brain to begin having inflammation problems again and causing

stroke episodes to become regular occurrences again. I absolutely hate

steroids, but think it may be the only way to spot the episodes in both my

girls. Asenath's cognitive skills and mentality has decreased quite a

bit in the last few weeks. Her therapists have noticed as well as us. It

is so sad to see her talking more babyish, having terrible hyperactivity

outbursts when she is frustrated, watching her struggle to remember things

that were easy for her, etc. I know we have been here before and she has

regained things lost before, but it is so horrible to see it again!

Stopping steroids was such a wonderful thought. But now she has apnea

again, snoring, chronic diarrhea, and stroke episodes again. The last day

of steroids is supposed to by tomorrow. Instead of being happy, I am

scared about stopping them.

Do others use steroids to stop stroke episodes? What do your docs do???

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)