I found it---where steroids make tics/ocd worse

[eljomom]

My link

 

It's under the section titled:

 

"Treatment of Pandas based on pathogenesis of post-streptoccal autoimmunity"

[keeptrying]

My link

 

It's under the section titled:

 

"Treatment of Pandas based on pathogenesis of post-streptoccal autoimmunity"

This is just one of many articles that I have read that states that steroids can worsen tic behavior. This is the main reason why I have continued to put off the steroid burst.I have been told that it would only last a short time if it did cause a problem but it is that "short" time that I am so worried about...This is really hard because we read how some kids get such relief after the steroids and how it can help to diagnose PANDAS but as a mom who will have to deal with the aftermath, I just do not know yet.

[giulia]

Hello!

We saw Dr B last Monday, and he started on Prednisone and Zythromax on TUE. Tics are a bit better, OCD better at times, worse at other times. Very manageable. I will continued as prescribed by Dr B, he really seems to know what he is talking about.

Take care

Giulia

[LNN]

My link

 

It's under the section titled:

 

"Treatment of Pandas based on pathogenesis of post-streptoccal autoimmunity"

 

There's no citation or study to support her statement that steroids make things worse in Pandas kids. It's been reported that steroids are contra-indicated in TS patients. So I think you do need to be sure you have Pandas and not Tourette's. But the majority of parents on this forum report a favorable response. I think it's a very personal decision - one you have to make in the context of your own child and in consultation with your doctor. I'm in no way trying to push one way or the other. Every treatment has risks. Steroids are not a no-brainer. But I would not let this one statement scare you, especially as there's no study cited to support this claim. It just doesn't match with what most of the Pandas doctors and researchers have experienced.

Edited February 7, 2011 by LLM

[kimballot]

My link

 

It's under the section titled:

 

"Treatment of Pandas based on pathogenesis of post-streptoccal autoimmunity"

 

There's no citation or study to support her statement that steroids make things worse in Pandas kids. It's been reported that steroids are contra-indicated in TS patients. So I think you do need to be sure you have Pandas and not Tourette's. But the majority of parents on this forum report a favorable response. I think it's a very personal decision - one you have to make in the context of your own child and in consultation with your doctor. I'm in no way trying to push one way or the other. Every treatment has risks. Steroids are not a no-brainer. But I would not let this one statement scare you, especially as there's no study cited to support this claim. It just doesn't match with what most of the Pandas doctors and researchers have experienced.

 

I agree with LLM - I am not trying to push steroids by any means, but I would not let this opinion be part of my decision (plus it looks like there has been no updating of literature since 2003, even though it states the site was updated in Jan., 2011).

 

The only reference I've ever seen for steroids with kids with PANDAS was the 1995 PITAND study by Allen, Swedo and others. I cannot find a link to the full text article online, but here is the abstract http://www.jaacap.com/article/S0890-8567(09)63789-8/abstract

 

The abstract does not really talk about the steroids, but basically this was a review of 4 cases of boys that they thought had an autoimmune trigger to their tics and/ or OCD.

 

I cannot figure out how to post a table or columns on here... but here is the breakdown of the 4 kids (hope this makes sense)

 

Case #. age / dx / infection dx / intervention / Immediate result / Several months later

 

1. 14 y.o / Tics + OCD/ GABHS/ Plasma-pheresis / Symptoms resolved & basal ganglia size reduced / Continued success

 

2. 10 y.o / OCD / Virus / Plasma-pheresis / Symptoms resolved / Continued success

 

3. 13 y.o / Tics / Virus / Prednisone / Symptoms decreased / Returned after a virus & subsequent prednisone unscuccesful

 

4. 13 y.o / Tics + OCD / GABHS / IVIG / Symptoms resolved / Continued success

 

 

So - of these orginial 4 boys, one had OCD only, one had tics only, and two had OCD and tics. The one that had tics only also happened to be the only one that was treated with prednisone. The prednisone did help initially, but when they checked back a few months later the child had experienced another virus with a return of tics and that time the prednisone did not work.

 

So... If people are referring to THIS article as saying that steroids do not work for tics, I would have to say that it is really only based on ONE case and that it did work temporarily (which I think is what most people understand about steroids today - they stop the immediate autoimmune response but do not cure the PANDAS). Also, this child did not respond a second time, but that was 16 years ago and it is quite possible that he had underlying infections that they were not aware of at the time.

 

 

I don't know if that makes your decision easier or more difficult. I still say the first step is to remove infection to the best of your ability before doing immune treatments. I also wish we could track down these kids (who are now in their late twenties) to know how they are doing!

 

Good luck!

[Fixit]

My link

 

It's under the section titled:

 

"Treatment of Pandas based on pathogenesis of post-streptoccal autoimmunity"

 

There's no citation or study to support her statement that steroids make things worse in Pandas kids. It's been reported that steroids are contra-indicated in TS patients. So I think you do need to be sure you have Pandas and not Tourette's. But the majority of parents on this forum report a favorable response. I think it's a very personal decision - one you have to make in the context of your own child and in consultation with your doctor. I'm in no way trying to push one way or the other. Every treatment has risks. Steroids are not a no-brainer. But I would not let this one statement scare you, especially as there's no study cited to support this claim. It just doesn't match with what most of the Pandas doctors and researchers have experienced.

 

I agree with LLM - I am not trying to push steroids by any means, but I would not let this opinion be part of my decision (plus it looks like there has been no updating of literature since 2003, even though it states the site was updated in Jan., 2011).

 

The only reference I've ever seen for steroids with kids with PANDAS was the 1995 PITAND study by Allen, Swedo and others. I cannot find a link to the full text article online, but here is the abstract http://www.jaacap.com/article/S0890-8567(09)63789-8/abstract

 

The abstract does not really talk about the steroids, but basically this was a review of 4 cases of boys that they thought had an autoimmune trigger to their tics and/ or OCD.

 

I cannot figure out how to post a table or columns on here... but here is the breakdown of the 4 kids (hope this makes sense)

 

Case #. age / dx / infection dx / intervention / Immediate result / Several months later

 

1. 14 y.o / Tics + OCD/ GABHS/ Plasma-pheresis / Symptoms resolved & basal ganglia size reduced / Continued success

 

2. 10 y.o / OCD / Virus / Plasma-pheresis / Symptoms resolved / Continued success

 

3. 13 y.o / Tics / Virus / Prednisone / Symptoms decreased / Returned after a virus & subsequent prednisone unscuccesful

 

4. 13 y.o / Tics + OCD / GABHS / IVIG / Symptoms resolved / Continued success

 

 

So - of these orginial 4 boys, one had OCD only, one had tics only, and two had OCD and tics. The one that had tics only also happened to be the only one that was treated with prednisone. The prednisone did help initially, but when they checked back a few months later the child had experienced another virus with a return of tics and that time the prednisone did not work.

 

So... If people are referring to THIS article as saying that steroids do not work for tics, I would have to say that it is really only based on ONE case and that it did work temporarily (which I think is what most people understand about steroids today - they stop the immediate autoimmune response but do not cure the PANDAS). Also, this child did not respond a second time, but that was 16 years ago and it is quite possible that he had underlying infections that they were not aware of at the time.

 

 

I don't know if that makes your decision easier or more difficult. I still say the first step is to remove infection to the best of your ability before doing immune treatments. I also wish we could track down these kids (who are now in their late twenties) to know how they are doing!

 

Good luck!

 

did not read all of above fully...

but to me if tics got worse with steriods...to me...that indicates an infection that was not cleared prior to steriod

lymes.

yeast.

other unknown illness.

JMHO

[kimballot]

 

did not read all of above fully...

but to me if tics got worse with steriods...to me...that indicates an infection that was not cleared prior to steriod

lymes.

yeast.

other unknown illness.

JMHO

 

Yes .. I agree... but the point is that we can't find any articles where the tics got worse. We found one article with one child where the tics got better the first time the steroids were used and they did not get better the second time (but that was 16 years ago, so there may have been an underlying infection). Do you know of any articles or research that shows tics have gotten worse after steroids? I think that is the fear and if there is evidence of this then we should know about it. Has anyone with PANDAS had tics get worse after steroids?

[Topaz1968]

I saw Dr. B last night and he is starting my son on a steroid for the 2nd time to clear up a sinus infection which could be causing some of his recent symptoms - tics, OCD, etc.

 

He did want to send him for blood work, but it was a nightmare last time I had to take my son, so he said we did not have to. We will treat is with the steroid and ABX and see what happens.

 

Last time, my son's tics did get worse as well as some of his other symptoms, before they got better. I am hoping that does not happen this time, but we will see.

 

I am picking the medicine up tomorrow.

 

I hate this roller coaster ride!!!

 

I am so frustrated with everything and my son is even more so - I feel horrible for him and hope that this helps him.

 

I will let you know how he makes out with the steroid.

[Fixit]

Yes..my son...

his onset was 10 months prior to starting steriod

found out in feb 2010 his myco p igg was really high and doc k wanted to do a burst....

 

so i started biaxin..the next day started the 5 day burst..by the 2nd day of steroid i thought i noticed a screech..by day 3 it was here full force...but i stayed the course with biaxin for the rest of the month and the 5 day burst...things got bad...

then 21 days post burst we had a miracluous 4 days....

so..i did get proof of autoimmune..but he rebounded hard..he was nearly inmcopassitated, full body ungelateing(sp)

 

was it the biaxin as i have recently noted about 6 people who also noted vocals and biaxin..

probably defiinely the steroid as it really increases yeast...

and herx, as now we are pretty certain, as you can be that he has lymes....and if that is the case he either had it just pre-this onset..since he was five or in utero

 

as we prepped to see doc L and we knew her protocal..we then attepmpted a taper about 5 months later, we had nothting to loose at this point,.. he had also been on several abx off and on....but this time we added diflucan with taper...well that was also fablous, each week was better and better...he was about 95% or maybe 98%...but that was short lived as school started...blah ,blah....but he did not go back as far as he was pre-taper.(no rebound like with burst)

 

its a long story..have fought screeches ever since..but notice corrleation to treating gut via vanco or clyndamicin and screeches would remit by end of treatment and stay away for a few weeks.....then after clynda(used this because of t&a he had) was replaced by a lesser vocal...

 

 

then after that,,,as i prepped more to get ready for pex...as per all the advise of be very sure of not having lymes..i have done several more tests(as his early test was very iffy)...it seems to be he does have lymes if anyone does(or at least something that looks and act like lymes..SOT)...so we will see...

[adkmom]

Just my 2 cents My ds4 tics and ocd got better after 2 week round of steroids. And contrary to what some may think, it didn't get worse even when he later tested positive for Lyme.

 

[ange]

Before we knew about Pandas, my son had a cough (later realized it was a tic) and some behavior issues. He was put on med. for the cough - the doc had listened to his lungs many times and kept saying nothing was wrong, and finally put him on something - I am thinking now it may have been a steroid. Anyway, all I can remember is that it was probably around then that his behaviors really deteriorated and his rages and tantrums escalated to the "this is not normal" level.

 

I wonder if the steroid had anything to do with it?

[eljomom]

adkmom---how long after having tics/ocd did you start the steroids? were there a ton of tics?

 

Just my 2 cents My ds4 tics and ocd got better after 2 week round of steroids. And contrary to what some may think, it didn't get worse even when he later tested positive for Lyme.

 

[Fixit]

Just my 2 cents My ds4 tics and ocd got better after 2 week round of steroids. And contrary to what some may think, it didn't get worse even when he later tested positive for Lyme.

 

 

i agree it doesn't have to get worse because you have lymes....i don't know that for ds getting worse with the first burst, was that it was lymes induced..i think it could have just as well been yeast...which is my real feeling..at least with the vocals(to add more, when ds had an episode when he was 5..as i paged through all the paper..i see script for predisone that helped him then.(pandas not believed).but it was perscibed do to possible abx allergic reaction post longer term penicialln dose)

 

anyway when we did the taper 5 months later, with diflucan(we realized after the biaxin and steriod, per some DAN testing that he had major intestinal, digestion, whatever, type issues)...that he again went to about 95-98% and had a longer lasting effect and luckily when thing digressed we didn't go back to our worst point...

 

would i do a steroid again..possibly...based on what i think is going on at the time....but now with each child i will do a taper, not a burst, and do it with diflucan...at least for my kids..

[EAMom]

I would be very leary of putting a PANDAS child on steroids without also being on a good full-strength antibiotic (and preferably abs for a month or two b-4 steroids are started). My concern about steroids w/out abs is that if there is a undetected infection (eg. Lyme, mycoplasma, strep) that infection could really take hold when the immune response is further dampened with steroids.