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croatian mum

tics explosion on the 1.st streoid day

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My son was treated for pandas,but After my son's vocal tic did not improwe we tried steroids today. Prednisone. 40 mg ix daily. After only 3 hours after he took the the pill his tics are so much much worse. We don't have any bad temper, no rage..he is ok, just his tics are so much much worse.

 

Don't know what to think. I've read that so many opposite comments..some say steroids make tics worse if a child has TS not pandas..

 

Has someone experienced tics worsening (not behavior)while on steroids and than a betterment?

 

We really feel hopeless this time..

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Did the doctor know that your son had a possible TS diagnosis before prescribing the prednisone? Our doctors warned us NEVER to use it in a TS patient due to it increasing dopamine and therefore potentially increasing tics. Even my son's GI specialist knew not to even try any steroids for his Crohn's disease due to the potential for tic exacerbation due to his TS

 

And yes, I do know someone who had prednisone as a steroid burst due to a back injury and had a major tic explosion. This person was in their 60s, with TS since childhood, but had stopped ticcing decades before. The prednisone triggered a tic waxing and the tics have remained, waxing and waning as in childhood. They had the burst some years ago. It also affected their cognitive functioning.

 

We have other anecdotal reports about steroids increasing tics, and if you do a Google search, you will find studies that link it to the dopamine increase.

 

 

My son was treated for pandas,but After my son's vocal tic did not improwe we tried steroids today. Prednisone. 40 mg ix daily. After only 3 hours after he took the the pill his tics are so much much worse. We don't have any bad temper, no rage..he is ok, just his tics are so much much worse.

 

Don't know what to think. I've read that so many opposite comments..some say steroids make tics worse if a child has TS not pandas..

 

Has someone experienced tics worsening (not behavior)while on steroids and than a betterment?

 

We really feel hopeless this time..

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I have PANDAS and my tics always get worse for a about a month after steroid treatment, then they disappear sometimes for years. In my case, it was very worth sticking out the "worse before better phase." The way that is was explained was that as the steroids reduce inflammation so drastically, your body needs time to rid itself of the all byproducts and excess cytokines. My neurologist has never mentioned that steroids increase dopamine and they certainly have never affected my cognitive function. The key with steroids is "quick in" " quick out." Longterm, they can have nasty side effects.

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Croatian mom...I guess the main question here should be whether or not your child has PANDAS? or TS? or both ? or is it still an unknown diagnosis??

The actual diagnosis really does make a difference in the benefit or adverse effect of steroids!

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My son is now12., got pandas diagnosis 1 year ago; from dr. K from USA. Before that he was diagnosed with Ts here in our country in Europe; at the age of 8; treated with Risperidone, Orap; haldol ecc. The docs here have never heard about PANDAS.

Than we got pandas diagnosis from dr K. who we had a chance to meet. And we had IVIG 7 month ago and after IVIG he was more or less tic free - some smaller motor tics but no vocal tic at all. Than his vocal tic came back; and we raised abx dose and they were gone in 3 days.

 

he was fine untill a month ago when his vocal tic came back again.(and his vocal tic was and still is our biggest problem).

 

So,for 6 month after IVIG he was meds free exept of abx. The best time in last 5 years..he has some smaller tics and movements..but nothing that anyone would notice exept me.

 

And the thing is - this time he got his tics back on the same day his younger brother got fever and was sick. So, I was thinking that he was reactive to his brother's condition..since we saw no betterment in vocal tics; we tried prednisone as dr. K adviced us..and his tics went to the roof.

 

I wish to think that maybe this is how is soposed to be; but still he had an immediate reaktion to steroids in worsening. I would like to think that maybe it is a hidden infektion or blame something else, but from what I'we seen - he just reacted very bad to steroids. What are the reasons -I don't know..

 

So, if it's Ts or Pnadas? A million dollar question for us..

 

we have no labs here, no doc. here.. watching his symptoms during the year he could have both. He fits all criteria for pandas but also for Ts. so, not an easy situation.

 

I don't know, I'm so confused..any help would be appreciated

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PANDAS and TS are not mutually exclusive...ie a child who already has genetic TS could also have PANDAS. But that does make treatment with steroids problematic.

 

If your child is not TS but PANDAS then there is the distinct possibility that the steroids are doing exactly what they are supposed to do, and that things are going through the 'worse before better" phase.

 

It seems to me it would be best to talk to the doctor who prescribed the steroids and see what they say.

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Yes, I did write to our doc.But it's sunnday; and he's not working today; so tomorrow he will probably answer, but there is a time difference about 7 hours - so I won't know anything before evening..and the question is - do I give it to him tomorrow or not..and tomorrow is soposed to be day 3.

And the strange thing also is that yesterday and today he had exactly 1,5 hours of beeing tic free. Like they never existed..not a tic. It happened yesterday on the afternoon and today again. After 1,5 hour they all came back as strong as before. Strange.Don't know how to xplain this.

 

And to Chemar: I highly respect Your posts/comments. I was reading them regulary before pandas diagnosis and learned that You really know a lot about it; and You have been helpful to us. (You didn't know it because I was not a member than so I never wrote ..)

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thanks croatian mom :) I try to help wherever I can, but as you are discovering, there are so many variables with tics that one can never be sure what may help or not!

 

If you feel sure the PANDAS dx is accurate (I assume they did all the testing possible etc and Dr K saw your child in person?), then it seems you should likely follow what the PANDAS doc said to do. Have you discussed this on the PANDAS forum too? The parents there have so much experience with steroid bursts.

 

My only concern about the ongoing steroid use is *if* there is also TS present. Is there a history of TS or tics in your family? Sorry if you already posted that in another thread and I may have missed it.

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No, there is no history of Ts in our familly.No one.

 

I'we got an answer from dr. today; he told us that this can happend sometimes; and that we should continue with the treatment. Don't know, we still see no relief, so I'm worried that this was a trial for my son, but on the other side, a I have confidence in our dr. so hope it will be ok after the treatment.

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with no TS history and a PANDAS dx , hopefully you will start seeing the improvement soon! I know for some PANDAS kids, the steroids have been so beneficial, so I do hope the same for your child.

 

So much is misdiagnosed TS that honestly, scientific or not, to me the genetic link is a very relevant factor when there is confusion over the dx. JMHO

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I don't know. he is getting worse every day..I'm more and more confused about it because we see some tics we haven't seen in years. Maybe the doc. just decided to try prednisone to have a more clearer picture of what is going on..because, if this time his tics will improve whiteout antipsychotics (like Orap); it will be a miracle.

 

don't know what else to say. we are shocked and whiteout explanation of what is going on here..

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so are you saying there is no clear diagnosis of PANDAS???

I am confused! I thought he was definitely diagnosed with PANDAS?

Was the doctor who prescribed the steroid the same doctor who said he had PANDAS?

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well, he was diagnosed with pandas, but I mean that this worsening of symptoms is giving me doubts now. I just read now that children with Lyme or some other infektions may have worsening while on steroids; so, maybe this is what we are dealing with.

 

And to Chemar;

 

my son is NOT taking ANY supplements; we were using a lot of supplements 2 years ago; than we stopped.

 

He is not eating most of the food (absolutely no fruit; absolutely no vegetables).Today I went to tha pharmacy and I bought flaxseed oil and vitamin B6. I also want to give him B complex; but didn't want to give him too many new things right now.

 

Which other vitamins would You recommend? What about magnesuim and Zink?

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Honestly, any suggestions I may have on what supplements we have found helpful, may not be of use to you because of the differences between PANDAS and TS.

You really need to speak to the doctor who dx the PANDAS and rx the steroids.

 

All I can say is that for my son, magnesium has always helped his tics (taking a supplement as well as the Epsom Baths)

If your child is not eating healthy foods, then it is important to provide nutritional supplements too.

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