What's your advice on this regarding severe ADEM? Has it helped you or your loved one who has ADEM?

Not sure what the drug is. Does it go by another name? What is it used for? I am curious. Thanks.

JP - Can you tell us more about your son's treatment so far? What we his symptoms? Was he given IVIG or steroids? Both? What is his current state? In our case we were given a 24 hour treatment of IVIG and saw improvement within a day. Full recovery can take a year or more. Hang in there and let us know how we can support you and your family. Ken

My son had the flu, and basically fell asleep into a deep coma. He was given antibiotics, steroids and IVIG for a week and then it was repeated another week. My son is alert and understands everything. He cannot walk, talk or take care of himself in any way. We have been at this for 27 months. Therapy five days a week of OT< PT and ST. Prayers for a full recovery are appreciated. Thanks.

So sorry to hear this Mary16. It's unbelievable what ADEM can do to our loved ones. My son is 3 and they tried everything, steroids, IVIG, plasma exchange and his on his 11th chemo treatment. They decreased some of the chemo drugs. Now he's a low dose of Azapriothine 1.3 ml which we give him thru his G tube. My son cannot see or talk and we have to watch him 24/7 b/c since he can't see he mouths/bites everything. It's very taxing.

I'm sooo THANKFUL my son is alive and breathing. I just wish there were more answers out there to help him improve. Before ADEM, my son was truly a bundle of joy! Truly loved life and people just loved to be around him!

It's sooo sad for us as parents to see our child struggle like this and feel helpless.

Yes, many prayers to you and your son and all that suffer from ADEM and other illnesses. Please GOD hear our prayers.

Yes, it is very sad. We have to watch my son 24/7 also. Look into home nursing, it may give you a break. My son was not a candidate for the plasma exchange or chemo treatment. What is Azapriothine used for? My son, luckily, is on very little medication now and the doctors said it will take time and lots of aggressive, intensive therapy. I am so happy too my son Is alive and with us everyday. We have seen improvement in him which we are grateful for, but it is always small improvements. I keep a journal of that so I can look back and remind myself how far he has come.

Praying for your son too.