Steroid Burst

[momtotaylor]

I searched through the forum looking for any links to articles or studies regarding steroid bursts. Dr. K had suggested that as our next step and I would like to do that; however, the pediatrician is still "researching" and has yet to find any "medical literature" supporting it. (I am frusterated to say the least. I wasn't requesting much. From my understanding, doctors hand out steroids all the time for rashes, hives, etc.) I haven't found much in the way of "medical literature" either. I was hoping to speed up the process by dropping some off for her.

 

Thanks!!

[Buster]

Hi MomtoTaylor,

 

Acutally there is good research on using prednisone as a diagnostic technique. However, the research is on Sydeham Chorea and not on PANDAS itself. see http://linkinghub.elsevier.com/retrieve/pi...887899405005436 for a double blind placebo controlled study on Prednisone and its effect for SC.

 

There is good research that PANDAS has similar antibodies to SC but at different concentration (see papers by Kirvan and Cunningham http://www.csus.edu/bios/faculty/Kirvan/Ki...JNI_article.pdf ). I should stress that these antibodies are not the ASO or Anti-DNAse-B antibodies we see in a lot of posts but are instead anti-neural antibodies known as 24.3.1, 31.1.1, and 37.2.1. There's good papers here by Church, Dale, Kirvan and Cunningham.

 

Now having said all that, our immunologist isn't a big fan of using Prednisone in this way as Pred has all sorts of side effects itself and there is some debate whether it would be predictive of a response to IVIG. I'm not sure what to say here except that Dr. K has seen more kids with PANDAS than probably anyone else. Prednisone likely carries less danger than IVIG and can help separate a case that would respond to anti-inflammatory or may be caused by an overactive immune system. I think this is why Dr. K uses it.

 

Hope the above links help.

 

 

Regards,

 

Buster

 

 

I searched through the forum looking for any links to articles or studies regarding steroid bursts. Dr. K had suggested that as our next step and I would like to do that; however, the pediatrician is still "researching" and has yet to find any "medical literature" supporting it. (I am frusterated to say the least. I wasn't requesting much. From my understanding, doctors hand out steroids all the time for rashes, hives, etc.) I haven't found much in the way of "medical literature" either. I was hoping to speed up the process by dropping some off for her.

 

Thanks!!

[bronxmom2]

Thanks for posting this, Buster. These articles both look very interesting.

 

Funny because I came on here today specifically to ask about literature supporting the use of steriods with PANDAS, at least as a diagnostic tool.

 

I am also looking for articles to share with our pediatrician. He is interested in PANDAS and is willing to consider treating my son more aggressively, but also wants medical literature to back everything.

 

Frustrating, because obviously one of the problems is that PANDAS has not been studied enough.

 

Anyway I told him I would dig up anything I could and leave it at his office.

 

Thanks!

[melanie]

Can asprin kindof act the same as a steriod with pandas ?Like the steriod burst?

[thereishope]

I looked around and all I could find is websites stating that a steroid brust is used to measure whether IVIG may be effective. However, part of the last sentence could back fire in your attempt to convince the ped. It means that steroids shouldn't be used long term, but peds tend to get scared easy. So I guess it depends whether your seeking it in the next step towarsd IVIG or for a long term treatment.

 

I'm posting it anyway for you to read.

 

 

http://www.webpediatrics.com/pandas.html

 

 

This is the part about steroids...

 

Corticosteroids

 

Just the fact that the "steroid burst" (used to test possible future effectiveness of IVIG) tends to control PANDAS symptoms effectively brings it into consideration as a possible treatment for PANDAS. Since the short-term steroid treatment only controls the symptoms temporarily and the prolonged use of it may have rather serious side effects, corticosteroids have not been (and should not be) used as a treatment in PANDAS.

[EAMom]

No...and you aren't supposed to give kids asprin anyway.

 

Some PANDAS kids do have a mild improvement (mood, sleep, possibly other symptoms) on Ibuprofen (Advil, Motrin). I wouldn't expect a non-pandas tourettes kid to have any sort of improvement on Ibuprofen. So, this might give you some sort of an indication that a child is PANDAS.

 

Re: pred...our pediatric immunologist (not a pandas expert though) did say that response to pred isn't always predictive of response to IVIG. In other words, a child might not respond to pred but could still respond to IVIG.

 

However, if a child does respond to pred then that does seem to confirm the PANDAS diagnosis.

[EAMom]

I've also heard others post that the steroid burst loses its effectiveness after a while. So you might see an improvement the 1st time you do it but not if you do it repeatedly.

[colleenrn]

I have never done the streoid burst with my children, but was wondering at what point do you decide to do it? My 6 yo with PANDAS has been on Zithromax since October and doing pretty well. The past several days he has been very emotional, with a very short fuse. He was exposed to strep a lot at school, but is now out for the summer. I had a culture done about 2 weeks ago when he had an "on again-off again" fever for several days. The culture was negative. I would love people's opinion as to whether I could or should do a steroid burst with him. I didi not know that was an option when my older children had their worst PANDAS episodes I bet it would have helped a lot. Thanks in advance for any input!

 

Colleen

[thereishope]

In case you're curious, when my son had a cold, his OCD kicked up a bit and I gave him Ibruprofen. Like clockwork, a half hour later, he was behaving better. I would even know when it was wearing off. He didn't take any cold meds w/ it either.

 

When my son had a 5 day dose of prednisone, he did not get it as an indicator if he had PANDAS nor did he get it to see if he was a candidate for IVIG. He got it because his behavior was spriralling down even after being on antibiotics for almost a week after a + strep test. My 5 yr old wouldn't eat, talking about wanting to go to heaven, horrible horrible rages, and more. The best way to explain it was the prednisone jump started recovery. After 3 doses, his behavior was dramatically better. When taken off, he still was not 100% himself, but he was better than he had been and was on the road to recovery.

[T_Mom]

We have done two steroid bursts. T

 

he first time it was suggested by a neurologist when our child was severely suddenly affected by OCD, to the point that she presented as if she had severe autism. A compassionate neurologist took one look at her and he told us that he would suggest an immediate steroid treatment as she was in "cognitive " pain. He had experience treating kids with tourettes, etc. and he also said that our general ped. would most likely be skeptical.

 

We were worried about the possible side effects, etc...and hesitated.

 

However, it got so bad that we after consulting with Dr K on the phone we did decided to try it--In our daughter's case, she also started on antibiotics (due to sinusitus) and within days she had a sudden and dramatic recovery. In our case we believe it to be brain inflammation that was directly helped by the steroids--only good side effects both times we have done this.

T.

[melanie]

We have done two steroid bursts. T

 

he first time it was suggested by a neurologist when our child was severely suddenly affected by OCD, to the point that she presented as if she had severe autism. A compassionate neurologist took one look at her and he told us that he would suggest an immediate steroid treatment as she was in "cognitive " pain. He had experience treating kids with tourettes, etc. and he also said that our general ped. would most likely be skeptical.

 

We were worried about the possible side effects, etc...and hesitated.

 

However, it got so bad that we after consulting with Dr K on the phone we did decided to try it--In our daughter's case, she also started on antibiotics (due to sinusitus) and within days she had a sudden and dramatic recovery. In our case we believe it to be brain inflammation that was directly helped by the steroids--only good side effects both times we have done this.

T.

 

BUT would asprin work?????

[lss]

Melanie,

 

Just fyi:

 

What is the Role of Aspirin?

 

Epidemiological research has shown an association between the development of Reye's Syndrome and the use of aspirin (a salicylate compound) for treating the symptoms of influenza-like illnesses, chicken pox, colds, etc.

 

The U.S. Surgeon General, the Food and Drug Administration, the Centers for Disease Control and Prevention, and the American Academy of Pediatrics recommend that aspirin and combination products containing aspirin not be given to children under 19 years of age during episodes of fever-causing illnesses.

 

Acetylsalicylate is another word for aspirin; some medicine labels may use the words acetylsalicylate, acetylsalicylic acid, salicylic acid, or salicylate instead of the word aspirin. Always ask your doctor or pharmacist before taking any medication.

 

 

 

Steroids are simply used to suppress the current symptoms.

Linda

[T_Mom]

BUT would asprin work?????

 

Hi Melanie,

I really think if aspirin was a remotely possible remedy we would have been advised in that regard.

I would want to ask a doctor before ever trying it.

 

(Retts syndrome, isn't it ? that can cause serious problems as a result of aspirin?)

Take care,

T.

[T_Mom]

oops, Reye syndrome, (not Retts) -- thanks Linda.

 

Melanie,

Here is a site with more explanation on the anti-inflammatory effects of steroids (this site is in regards to arthritis issues.)

As noted, steroids also effect the immune system.

"Steroids work by decreasing inflammation and reducing the activity of the immune system. They are used to treat a variety of inflammatory diseases and conditions..." http://www.medicinenet.com/steroids_to_tre...tis/article.htm

 

In our case the hope was that they would contribute to helping the body to heal along the way, jump start the process--towards stabilizing.

Best,

T.

[greeneyes48072]

We did the steroids three times. First time was a six day burst. Didn't work until day 5, but showed an 80% reduction. Within a week of coming off, tics were back, so we started a low dose of 4mg per day. The tics reduced even further within a day, by about 90%. After about another week the steroid became ineffective and we stopped. Then after a few months we tried one more six day burst. This time 0% reduction with tics, maybe a slight improvement with attitude. We told Dr K about this, and he said that it seems that the steroids only work the first couple times and that we "cashed out" on it's effectiveness...