I got a call from Mito Nurse this morning.
Last Thursday I left a message on her v.m. giving her and Dr. S a heads up on the fact that Hudson is getting no seizure relief whatsoever. I figured he would need to mull over what his plans would involve next.....
which is trying prednisolone. I have heard cancer patients use it, and I know it has many uses, but I had no idea this was a drug Hudson might be tried on.
It is for 3 days only, twice a day. We won't see any long term effects of the steroid, mainly just increased alertness, which won't thrill me if it interrupts our sleep.
I was told it is sometimes used for infantile spasms.
Anyone out there try this????
I hate this....experimenting with serious drugs....not knowing if and how he will react....as many of us know with seizure kids, the drugs can have horrid effects on behavior....I certainly need some prayers this week for Hudson and any feedback if anyone has experience with this drug in regards to seizures.
6 comments:
I don't have experience with it for seizures. I had to use it when taking chemotherapy to take inflammation down the chemo caused. Hubby took it for on-going pneumonia issues. I have searched the net before I read this and have never heard of it for seizures. Interesting!
praying for you all! i HATE experiementing with serious drugs with Abigail, too... and she has had serious, long term side effects from at least two that we tried. :O( not good. praying that this helps Hudson and that there are NO bad side effects!!
Sorry no help here either I hope someone knows something, no help by googling? Im praying it helps without some sleepless nights! hugs and MORE hugs--
Heidi & Jack.
A lot of doctors start off with this before pursuing ACTH. It's a slightly milder ACTH alternative. How did Hudson respond to ACTH? I've just never heard of anyone trying it after failing most other drugs.
I have a lot of friends on FB who use it especially if IS is not controlled with ACTH and sometimes before trying ACTH. Emily has had some good periods of seizure relief on steriods. We are actually getting ready to do another round of ACTH. When we went to Cleveland the neuro there said to give her steriods for out really bad times. I will be praying for you all!!
This drug was tried right before ACTH with Bennett, while we waited for the ACTH approval to go through. Some Neuros consider it a first-line treatment along with ACTH or Sabril, but as with all the meds not every Neuro will agree.
I can't say what effect it did or did not have on Bennett since he wasn't on it long enough, but no drug worked for him, since in the end it would only be discovered that there was a tumor causing the seizures all along, and no med would have stopped them no matter how many we tried.
Good luck with it, if you decide to go down this road though.
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