Seroid burst

[beeskneesmommy]

My son is currently doing very well. However, I try to be prepared for crisis because, as we all know, when it comes, it comes fast. I was advised against a steroid burst by a PANDAS specialist because it apparently can cause psychosis and severe tics in small children. However, this was at one time on the table from another specialist that we see and I would like to have viable options in my bag of tricks should I need them in the future. Has anyone with preschool age kids heard of, or experienced these adverse affects from steroid bursts?

[dcmom]

My daughter had just turned 6 when she had her first steroid burst. It was a month long, tapering dose. It was amazing. She was completely back to herself on the burst, plus an increased appetite (which for us was a blessing, because during pandas flares she barely eats, and she is very thin).

 

I have not heard of steroids causing tics, and we haven't had tics with pandas, so I cannot comment.

 

I have heard of steroids causing psychosis, I think it is rare, and I do think if you remove the steroids they get better (psychosis goes away).

 

Certainly, steroids come with some side effects. There are risks of long term steroid use. But- a month long taper is given for many issues, not just pandas. It is NOT considered long term. Frankly, I don't know where we would be without steroids. They have been a MAJOR tool for us in fighting pandas. We did pex once (which was great, but not practical), but have not had to repeat it, or do IVIG because of steroids. In my opinion, in a risk vs. reward evaluation, steroids are an easy choice.

 

If your child is doing well, or continuing to improve, however- I would not do steroids at that time- my theory is always, it things are moving in the right direction- don't rock the boat.

[PowPow]

My 5 yo daughter also had a month of steroids last winter. It was very, very successful in treating her PANDAS symptoms. We may have had a few rough days in the first week or two, but of course, PANDAS symptoms were rough- so who knows what was causing it!

 

My just turned 4yo just had 2 doses of IV steroids and 30 mg at home for several days after an asthma/pneumonis hospitalization. She was a little hyped up (although was very hyper at that time already!)but she did great and many questionable symptoms (PANDAS?) got much better the week+ after. Unfortuantely- she started crying in the car last night about how she could not stop seeing knives "the sharp kind" and she was too afraid to tell me what the knives were doing. So, I guess the effect did not last. darn..

 

best wishes.

[beeskneesmommy]

My daughter had just turned 6 when she had her first steroid burst. It was a month long, tapering dose. It was amazing. She was completely back to herself on the burst, plus an increased appetite (which for us was a blessing, because during pandas flares she barely eats, and she is very thin).

 

I have not heard of steroids causing tics, and we haven't had tics with pandas, so I cannot comment.

 

I have heard of steroids causing psychosis, I think it is rare, and I do think if you remove the steroids they get better (psychosis goes away).

 

Certainly, steroids come with some side effects. There are risks of long term steroid use. But- a month long taper is given for many issues, not just pandas. It is NOT considered long term. Frankly, I don't know where we would be without steroids. They have been a MAJOR tool for us in fighting pandas. We did pex once (which was great, but not practical), but have not had to repeat it, or do IVIG because of steroids. In my opinion, in a risk vs. reward evaluation, steroids are an easy choice.

 

If your child is doing well, or continuing to improve, however- I would not do steroids at that time- my theory is always, it things are moving in the right direction- don't rock the boat.

 

Thanks. I do not plan to do anything right now as there is really nothing to treat. My son has been doing amazingly well for quite a while on the abx protocol that he is currently on. however, I am a plan ahead kind of gal. Hopefully, we will not need it, but there have been so many times in which we thought we were out of the woods, only to awaken one morning heartbroken. I am a firm believer in utilizing the lowest level of intervention possible, and if problems arise, steroids would be the next consideration. I am resistant to IVig and less resistant to PEX, but I consider them both to be viable options as a last resort.

[beeskneesmommy]

Pow wow - I am sorry - hang in there! My son is living proof that kids CAN get better for long (as in 3 months so far) periods of time....