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Question about son's second steroid burst


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I would really appreciate any advice on this.

 

We completed a 2nd steroid burst for our DS9 last week. We did the first burst (prednisone, 30 mg twice a day for 5 days) in January, and saw big improvements that started the day after the burst finished. His anxiety about being upstairs alone went away completely and is only now beginning to resurface very slightly. His mood, and also tics, were really reduced for a period of maybe a month. This was good as he has huge pollen allergies and this is normally the toughest time of year for him.

 

But we have seen absolutely no change after this second burst. We did the first burst as a diagnostic test, to show that his problem was indeed inflammation (he's been diagnosed with standard TS for the last 5 years). We did the second one to confirm that the results from the first weren't just some kind of coincidence - my husband's a scientist and he needed to see that the experiment was repeatable B)

 

We were seriously considering moving on to IVIG (we've done a month of high dose Augmentin and are now on proph Azith) but now I'm wondering why the steroids haven't changed anything this time. Can anyone explain why this might have happened? It's really made us wonder if IVIG is the right thing to do - it seems like a tough procedure for kids to go through when you have no evidence that it will help..

 

Can anyone offer any insight here?

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Hi - not sure if we have corresponded before on the PANDAS Network? The steroid burst can sometimes take up to a week or two to show results. I have heard this in about 4 or 5 families. So perhaps you can be patient. But, really, if there are other factors - health, recent illness - going on perhaps this had an affect.

 

There are more and more "long-term" pandas cases coming up now that most of the parents I don't think have a lot of experience with. It is a new area in the last few months since Saving Sammy came out. I do know that Dr. Kovacevic has had some very good luck with some recent long-term cases - he is the ONLY doctor qualified to really understand these cases I think. I hope you'll reach out to him. www.webpediatrics.com

 

My feeling too - is if you're doing IVIG - it is wise to do some bloodwork to look at your sons' IGG's and IGA in particular. Kids with TS can often have low IGA and you need to be careful with certain types of IVIG if this is the case.

 

Hope this helps a bit. diana

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Britmom-

 

Unfortunately, I can't help your husband out with the science of this all. Maybe a consult with Dr K would be helpful. But I can share my older daughter's, age 9, story.

 

She has had pandas (ocd) for a year, unfortunately we didn't realize until about 8 mos in. She had a sudden, but somewhat mild onset following strep last march. Then after the flu in November, she started to go downhill, and we got the diagnosis. At that point, she did a month long steroid burst. For the whole month of December we had a girl back that we hadn't seen in almost a year. All of her ocd and anxiety completely gone. Jan 3, she came down with a cold, and for the following week, started going downhill again. We decided to try another burst, since she had done SO well on the first one. It didn't help at all (or so we thought). Well maybe the burst was just holding back the floodgates, because once she was off of the steroids she went off a cliff. She ended up having plasma pheresis a month later. It is early (so I don't want to jinx us), but so far she has responded well.

 

Good luck- it's a tough decision.

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I don't know that 5 days of prednisone is long enough under certain circumstances. They prescribe 10 days for for poison ivy because it takes more than 5 days to squash the inflammation. Our Pandas doc uses a 3-4 week approach, with 7-14 days at full strength, then two weeks of slowly tapering down. This has given us great results. We have not seen miracles in the first 5 days - improvement yes, but not complete. Tics were the most resistant symptom. So I don't think you can consider results after only 5 days conclusive either way.

 

The one thing you should be aware of - if there's an infection, the prednisone could actually make things worse once you're done with it, because the pred would have suppressed the body's ability to fight the infection. I think this explains the uptick of symptoms after a burst in some cases. However, if you do pred after the infection is gone, then I think you may enjoy some longer lasting improvements. That's been our experience anyway.

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I just read something interesting on wemove.org about treatment of sydenham's chorea. The author stated that many times after a steroid burst of 2 weeks, the prescription will call for a 2 week taper, and during the time of the taper, and for up to 4 weeks after the a nsaid (they used the term salicylate, under which I think NSAID are- please correct me if this is wrong) will be prescribed to prevent rebound inflammation.

 

This sounds like a great idea- I think I will try that for our next burst. Our kids can use all the help they can get :)

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I just read something interesting on wemove.org about treatment of sydenham's chorea. The author stated that many times after a steroid burst of 2 weeks, the prescription will call for a 2 week taper, and during the time of the taper, and for up to 4 weeks after the a nsaid (they used the term salicylate, under which I think NSAID are- please correct me if this is wrong) will be prescribed to prevent rebound inflammation.

 

This sounds like a great idea- I think I will try that for our next burst. Our kids can use all the help they can get :)

 

Can you explain the bold type....are all steroids high sallicylates????? if so that may explain some things.....i don't beliee you can test for salicyclate allergy but every time ds eats fruit his mouth itches....

 

has anyone new info on possible treatment or tests for saliciyaltes???

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Thanks to everyone who got back to me on this. Honestly, we were rushing thru this 2nd burst to get to IVIG as it looks as though our health insurance will lose its contract with the hospital that does the IVIG here in mid-April. That means we will have to pay but I think we need to give this more time. We had DS9's IgG subclasses 1-4 checked recently - he was normal on all, although subclass 4 came in at 4 and the range is 1 to 95. We do know that he has almost no secretory IgA in his gut. Is this a red flag for IVIG?

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