Relapse

[mom md]

It took about 3 days and then we started to see real improvement. I saw my son's teacher this morning at the Halloween parade and she said they have had two PERFECT days. I am starting to relax a little now. If we "relapse" a few times a year and respond to steroids, I could handle that. The immunologist still thinks he needs regular IVIG but we are still trying to figure out how to get it paid for. She called the immunologist in Nebraska who teaches at UCLA and treats other kids yesterday, as well as Dr. Latimer, and the immunologist she is working with in DC, Dr. Bellanti. She is really trying to understand this disease so she can treat my son and the handful of other children she is treating with it. I feel so thankful to have found her.

[Ellen]

Mom MD, I am really happy to hear that your son responded well to the steroids after his relapse. Keep us posted on what happens with IVIG.

 

Ellen

 

It took about 3 days and then we started to see real improvement. I saw my son's teacher this morning at the Halloween parade and she said they have had two PERFECT days. I am starting to relax a little now. If we "relapse" a few times a year and respond to steroids, I could handle that. The immunologist still thinks he needs regular IVIG but we are still trying to figure out how to get it paid for. She called the immunologist in Nebraska who teaches at UCLA and treats other kids yesterday, as well as Dr. Latimer, and the immunologist she is working with in DC, Dr. Bellanti. She is really trying to understand this disease so she can treat my son and the handful of other children she is treating with it. I feel so thankful to have found her.

[thereishope]

Glad to hear things are well. When my son had his second strep infection , he went steroids rather quickly. Like you, I began to see a form of improvement on day 3. I have other episodes to compare my son to in which he did not receive a steroid. I can see, for my son, receiving a steroid very soon after infection is very important.

[sf_mom]

Fantastic! Keep us posted.

[P_Mom]

Mom MD....good to hear he is improving!!

 

Did you do a 5 day burst...or, a longer taper??

 

Thanks!

[mom md]

we did 1mg/kg x 5 days, 0.5mg/kg x 5 days, then a four day taper. We are on day 9 of 14.