What to expect when stop the steroid?

[dabel]

My son finished his 5 day steroid burst yesterday. I was not expecting to see huge changes as he (THANK GOD) is not in a real bad phase right now. Here is a summary....Day One: He felt mellower both mentally and phsically. He felt bouncier and happier. Still had some "baby" talk type stuff and moving of his legs. Day Two: Kind of hyper but not too bad. Still had the talk and busy legs. Had a lot of anxiety when we did some school work. Got a bit edgy in the evening. Didn't want to go to bed - you see that inner frustration. Had a hard time falling asleep and woke up quite a bit. Day Three: His leg movements were more. Tired and not as hyper. His mood would flip like a switch all day. When he went to bed he cried a A LOT! He was just an emotional wreck! Later he said he had a headache and was hot. Maybe a little over tired from not sleeping well the night before. I got worried at this point because I thought he was supposed to get better on the steroids! Day Four: He felt good! He said his bad thoughts were 65-70 % gone! Went to a birthday party at a bar with a band ( grandmas 65th) and he held up well! He usually can't handle the chaos. All in all a very good day! Day Five: Fantastic day!!!! Says thoughts are 90-95% gone!!! First day off the steroids is today. Things are not so good. Had extreme anxiety when trying to do some school work. You can see and feel the inner errr! He says that the thoughts are not back but that he just feels nothing. Should I expect a big ole crash here or what have you guys experienced with this? Oh, my son is 12 and very recently diagnosed after having this for a LONG time! Has horrible rage issues and terrible intrusive thoughts. Not to mention the fact that flattly refuses to go to school! We are planning on doing the IVIG ASAP. I can't wait! Thank you in advance for your input on this. Just wondering if this is normal and if I should brace myself!!!

[dcmom]

My dd did get a little worse when tapering off the steroids. At the time I thought it was exposure to strep- now, after reading this from several parents, I am not sure. Anyway she got a little worse for less than a week, then went back to almost as good as her best day on steroids.... So hang in there.....

[pixiesdaddy]

I don't know if this was because we ended the steroid burst or our DD just happened to hit an exacerbation at that time, but we saw a significant reaction.

 

We were on a 5 day (8 ml per day) steroid burst as a diagnostic. Our DD is 9 years old.

 

For the first 10-12 days after starting the burst, she was SIGNIFICANTLY better, some of the best behavior we'd seen in a long time. Day 13-14, she bottomed out so badly she ended up in the ER after a rage attack, couldn't begin the school year, and led directly to having IVIG.

 

We still aren't sure if it was steroid withdrawal, reaction to coming off, or something else, but there it is for whatever it's worth.

 

I don't regret giving her the steroid - it confirmed the diagnosis which led to IVIG which has really helped, but it was not pleasant.

 

Pixiesdaddy

[Iowamom]

DeAnn-

 

Hello! Your boy's response is very encouraging!! Our boy crashed after the steroid. Doc said it was too abrupt. Do you have a date for IVIG? Did you get a response from Dr. K?

 

We are headed into our 4th week Post IVIG. We are seeing some encouraging signs. His day was awesome. Seemed so much like a 10 yo. We are seeing this more. More flexibilty, less stuck thinking. That was until he had a meltdown close to be bedtime. His meltdowns don't seem as intense, or go on as long.

 

Dawn