Steroid burst question

[tantrums]

Both of my sons current doctors, who are learning about this as they go too - briefly mentioned the steroid bursts. He had chronic croup as a infant and up until PANDAS began. PLEASE can I have the croup back? So we are very well versed in the steroids here. In fact, as his adult teeth grow in, we are finding them all discolored from so much orapred when he was just 1!

 

When he was on steroids before, usually a 5 day course, we'd call him "steroid boy" - totally off the wall. At that time, it was the only time he acted like that. Now that irrational, raging behavior is becoming his normal, I am very scared to consider giving him steroids.

 

How has that worked for others?

[thereishope]

Are they using the steroid as a diagnostic tool or the hoping it jump start recovery? Is your son improving with antibiotics yet? If so, can you describe how the improvement is going?

 

My son had a 5 day steroid burst with his 2nd exacerbation. It helped his symptoms plateau and started the recovery process. For us, it was very beneficial.

 

This is when the disclosures begin...

 

-For some, the benefits of the steroid is temp. The PANDAS symtpoms do come back

 

-I believe the majority of the PANDAS kids in this forum did not have adverse effects from the steroids, but I know for some their behaviors did worsen. I think I can recall 2 that the steroid worsened symptms but they then had sucessful IVIG.

 

-The time frame for seeing the benefits of a steroid vary greatly too.

 

Personally, if your son had adverse reactions to a streoid in the past, I probably would not do it to be honest. Especially if you are seeing improvement right now with an antibiotic. Do you see an easing of symptoms with Ibuprofen?

[Kayanne]

I agree with Vicki, if you are aware that your son has reactions from the steroids, then I would try the anibiotics first...sadly, sometimes it is hard to tell if it is the PANDAS or a side effect of the pred.

 

My daughter was one whose recovery was sped up by a month long course of pred, and she is still doing very well. However, just prior to starting the pred, she was getting ragey....and that continued the first two weeks with the higher doses of pre, but by the third week she was mmuch calmer.

 

~Karen

[matis_mom]

Both of my sons current doctors, who are learning about this as they go too - briefly mentioned the steroid bursts. He had chronic croup as a infant and up until PANDAS began. PLEASE can I have the croup back? So we are very well versed in the steroids here. In fact, as his adult teeth grow in, we are finding them all discolored from so much orapred when he was just 1!

 

When he was on steroids before, usually a 5 day course, we'd call him "steroid boy" - totally off the wall. At that time, it was the only time he acted like that. Now that irrational, raging behavior is becoming his normal, I am very scared to consider giving him steroids.

 

How has that worked for others?

Tantrums,

We've had no adverse issues with steroids. Dr Latimer said while they do make some kids hyper, that is usually not the case for PANDAS kids, it tends to settle things down. So at this point, if you are already seeing the irrational/raging behavior, I would give them a try and see if they slow things down. Of course, all this assuming antibiotics are already in use.

[monarchcat]

We did a one month course of steroids prescribed by Dr. Latimer. By the second week my son was incredibly short tempered and cranky, etc. There was a different feel to it, though, which made me think it was from the steroids and not PANDAS. He also ate like a truck driver the whole month. About a week after ending the steroids we started seeing a positive response... happy, calm, friendly, sweet, etc. That lasted a couple weeks and then we started back with the ups and downs and PANDAS symptoms again.

 

I'm not exactly sorry that we did the steroids, but I don't know think they have any long term effect. However, his CamK score was down to 132 right after the steroids ended (from 193 before any treatment in August) and his antineuronal antibody levels came down, too. His tics never went away, though, and are now worse than ever, including his first-ever vocal tic. I would imagine his CamK score is back up now, based on behaviors.

[Chemar]

His tics never went away, though, and are now worse than ever, including his first-ever vocal tic.

 

IF there is any chance of Tourette Syndrome (and not saying there is in your child's case, just commenting.....) then steroids can dramatically increase tics.

 

I know the steroid burst is a really beneficial treatment in PANDAS so please, before anyone misunderstands what I am saying again, I am NOT suggesting it shouldnt be used for PANDAS kids....

 

I would just be remiss if I didnt keep reminding anyone who may have a child who also has TS, that steroids can dramatically trigger tics

[monarchcat]

I know.. I am so conflicted about this. He absolutely has PANDAS, I think I have no question about that. His first CamK score put him in the range of the SC kids and he certainly fits the other criteria as well. However, the steroids did nothing to reduce the tics, and now, 6 weeks after stopping the steroids we have his first ever vocal. This concerns me greatly. I have seen differences in behavior, mood, etc with the antibiotics, but the tics seem to be more constant and worse than ever since we started treating for PANDAS. I also think I see chorea in amongst the tics as well, though, which I don't believe would be there with TS?

 

 

His tics never went away, though, and are now worse than ever, including his first-ever vocal tic.

 

IF there is any chance of Tourette Syndrome (and not saying there is in your child's case, just commenting.....) then steroids can dramatically increase tics.

 

I know the steroid burst is a really beneficial treatment in PANDAS so please, before anyone misunderstands what I am saying again, I am NOT suggesting it shouldnt be used for PANDAS kids....

 

I would just be remiss if I didnt keep reminding anyone who may have a child who also has TS, that steroids can dramatically trigger tics