Saturday, June 7, 2008

Still Storming

Brayden is still having neurostorms. More frequently than before now. The only thing that helps is giving him ativan, which makes him sleep all the time. He has been crying alot, nothing seems to ease him. I just feel so helpless because nothing seems to help but knocking him out with the ativan. He finally got his bath seat so now he can take a bath in the bathtub!!!! We are still trying to raise money for his HBOT. Brayden went on his first outing on Friday. He went to see his pediatrician for a follow up since his hospital discharge. We are only getting nurses 12 hours a day at nights now from 7pm to 7am. Between all the other things I have to do and taking care of him, I am totally exhausted. I will try to update more often but I am finding very little time to do things now.


Anonymous said...

you will a little break when we go for HBOT. you wilol have 2 other women to you look after him. you will able to get some rest then. i think it will be good for the both of you. a nice calm inviroment, with people who want to help you. - love michele

Aidan's mom said...

Hi, I found your blog through the PONDS group. My son, Aidan, is only 4 months post ND. I was curious about what other meds the doctors have tried for Brayden's storming. Ativan never really helped Aidan because it is so short acting and he developed a tolerance to it. He has been on the gammut of drugs for neurostorming and the only one that really helped him is valium.

I know it might not work for all kids, but I would hope that his doctors would actually try other meds than just Ativan, because there are others that can help. I can send you what research articles I have, if you haven't read any.

It looks like Brayden is well on the path to recovery. I'm glad you have been able to get him started with HBOT. We've noticed a difference in Aidan.

Please feel free to email me and check out Aidan's blog, It stinks that we're in the situation, but at least we have others to turn to for support and advice that have been in our shoes.

My thoughts and prayers are with Brayden, you and your family.