Symptoms after steroid burst

[kcdc3]

DD did steroid burst 2/3/10 for 5 days, coupled with Clindimycin. She is a Mycoplasma case, not strep - or at least not currently (We did not know she was Myco until after the burst and the trial of Clindimycin). We had about 4 days within the 2 weeks following the burst where she had really good moods, no tics that I noticed and an ability to want to conquer the OCD. The 4 days were not in succession - they were variably placed throughout the 2 weeks. Starting on 2/17/10, she began ticcing almost CONSTANTLY (240 times an hour) and her OCD ramped up considerably. This lasted for one full week. The tics are back down now to about where they were before the burst, however her OCD seems to be worse than before the burst. Can anyone else relate to this?

[Fixit]

DD did steroid burst 2/3/10 for 5 days, coupled with Clindimycin. She is a Mycoplasma case, not strep - or at least not currently (We did not know she was Myco until after the burst and the trial of Clindimycin). We had about 4 days within the 2 weeks following the burst where she had really good moods, no tics that I noticed and an ability to want to conquer the OCD. The 4 days were not in succession - they were variably placed throughout the 2 weeks. Starting on 2/17/10, she began ticcing almost CONSTANTLY (240 times an hour) and her OCD ramped up considerably. This lasted for one full week. The tics are back down now to about where they were before the burst, however her OCD seems to be worse than before the burst. Can anyone else relate to this?

 

Did anything ramp up during the inital burst/ abx, and then calmed down before they ramped up again? Like a roller coaster up, down very low,then way up

Did your daughter go to school duing this period?

 

I would also like to know.

Could there be something like a die off period like you hear about with Candida?

My son at this point tics 200-300 times an hour as of the last month maybe longer.(i can't remember things anymore) .but you figure about every 10 seconds so that's more like 360 rotating between every part of his body or a vocal.....i would be happy with 1 a minute( i think) But I Want NONE!!!

[kcdc3]

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Did anything ramp up during the inital burst/ abx, and then calmed down before they ramped up again? Like a roller coaster up, down very low,then way up

Did your daughter go to school duing this period?

 

 

Nothing really ramped up during the burst (this was her 1st burst) except maybe her mood temporarily. She actually got better with the tics a week or so into it and the OCD was okay, but it was after the burst - 2 weeks after that her tics went crazy and the OCD got worse. She was in school during this time, as she has been before, but her symptoms increased at school as well. I would say the past 4 years have been like a roller coaster, unfortunately.

[peglem]

corticosteroids (prednisone) suppress the immune system. So even if your child is on abx at the time- pathogens (especially virus) will face less opposition while the steroids are in the body. Once the steroids wear off you'll frequently see illness as the immune system begins to fight again.

[thereishope]

Unfortunately, for the majority of kids, the steroid burst provides only temp relief. The timeline vaires as to when you may see the relief and the duration of the relief varies.

 

Some parents do say that the steroid burst aids in their child overall recovey. Some even say w/o regression afterwards. This probably depends on a lot of factors. What the PANDAS symptoms were, how soon after infection or onset of exacerbation of symtpoms the steroid was given, how long they had the infection. With my son, the 5 day steroid did aid in recovery, but his main symtpom was OCD, no tics. He also received rather early on in one of his exacerbations.

 

As for the worsening of OCD, as oppose to going back to pre-steroid status, well, maybe it's the OCD just taking over control as OCD loves to do.

 

I do know one person on here said their child was give Zith for Mycro P and wasn't improving and graduated to Biaxin. So, that is something to consider/request if things continue to worsen. I admit, it's ridiculous how we have to sit here and make so many guesses and 'maybes" with our children. Wouldn't it be lovely if we can just call the dcotor, they tell us what to do, and it worked.

[Fixit]

DD did steroid burst 2/3/10 for 5 days, coupled with Clindimycin. She is a Mycoplasma case, not strep - or at least not currently (We did not know she was Myco until after the burst and the trial of Clindimycin). We had about 4 days within the 2 weeks following the burst where she had really good moods, no tics that I noticed and an ability to want to conquer the OCD. The 4 days were not in succession - they were variably placed throughout the 2 weeks. Starting on 2/17/10, she began ticcing almost CONSTANTLY (240 times an hour) and her OCD ramped up considerably. This lasted for one full week. The tics are back down now to about where they were before the burst, however her OCD seems to be worse than before the burst. Can anyone else relate to this?

 

We finished with the steroid burst on Tuesday, 02/23/10. My daughter symptoms improved while taking the steroids. By Friday(02/26/10) all the symptoms came back. She doing worse than before(the steroid burst). Today, her OCD was severe and she spent hours crying. I am very worried!

 

 

Here is a sad thought....

Maybe things were actully wors than we realize as we start this and move forward....things get mildly, slowly better till that seems the norm...then when everthing wears off and you go back to baseline you've actually forgotten how bad it was(it just seems wore)

 

I'll ask again...could there be a die off period with this that is ramping things up!!!!!

[pixiesdaddy]

I don't know about the science of it, but our DD9 clearly got worse after vastly improving on the 10-day prednisolone burst. She really nose-dived right at the end of it. We did IVIG shortly thereafter and she improved on IVIG, so I'm not sure how long-lasting the worsening after the steroids would have been for us.

 

Pixiesdaddy

[thereishope]

With Lyme, there is a worsening with die off. I don't know how it works with yeast. As for PANDAS, in general, as it pertains to my son and strep...he worsens for a few days after starting antibiotics then I see him plateua and slowly improve. Overall, it takes months to get back to baseline with bumps in the road along the way.

 

As for Mycro P, I've read others saying they have seen physical symtpoms like a cough come along after starting meds for it, but I can't remember about PANDAS symptoms. I know one other person with a Mycro P case taking clindamycin for it. I think it'd be good to compare notes with that person. Let me think for a minute and try to remember who.

 

I'll ask again...could there be a die off period with this that is ramping things up!!!!!

[thereishope]

Joan Pandas Mom. Her son was recently dx with Mycro P by dr T. He was given clindamycin. I suggest comparing notes with her.

[Chemar]

I just do have to mention again that *IF* there may be Tourette Syndrome then the steroid burst *may* make things worse

 

we know this from personal experience, and also anecdotal reports from others. Not saying this will be the case with everyone but it can sometimes explain why things get worse

 

people who have TS should be VERY CAUTIOUS about ever using any type of steroids

[nomoz]

I just do have to mention again that *IF* there may be Tourette Syndrome then the steroid burst *may* make things worse

 

we know this from personal experience, and also anecdotal reports from others. Not saying this will be the case with everyone but it can sometimes explain why things get worse

 

people who have TS should be VERY CAUTIOUS about ever using any type of steroids

 

I was just about to add the same comment. If you had this result with steroids, it may be TS.

Try meds that are geared for it (ie Tenex) and monitor results.

 

Good luck!

[kcdc3]

I probably need to clarify - we were on the Clindimycin while on the steroids. We then switched to Clarithromycin (generic Biaxin) after we got the Mycoplasma diagnosis. We are currently on the Clarithromycin.

I really do not think she has TS for several reasons, but the main reason is that she suddenly came down with tics directly after a strep infection in July. The fact that her body could do that somewhat solidified my guess that she had PANDAS with her OCD, although I can not pinpoint exactly the infection that caused it (the OCD). I think it was an undiagnosed infection that I did not know she had (as I didn't know she had the strep in July, either and the Mycoplasma - who would have ever guessed!!). I'm really trying hard to just have some patience. When things ramp up and get worse, you just always second guess yourself, I guess. It could be all coincidence and she may just be experiencing an exacerbation. But then I wonder - an exacerbation on antibiotics? So frustrating!!

[faith]

DD did steroid burst 2/3/10 for 5 days, coupled with Clindimycin. She is a Mycoplasma case, not strep - or at least not currently (We did not know she was Myco until after the burst and the trial of Clindimycin). We had about 4 days within the 2 weeks following the burst where she had really good moods, no tics that I noticed and an ability to want to conquer the OCD. The 4 days were not in succession - they were variably placed throughout the 2 weeks. Starting on 2/17/10, she began ticcing almost CONSTANTLY (240 times an hour) and her OCD ramped up considerably. This lasted for one full week. The tics are back down now to about where they were before the burst, however her OCD seems to be worse than before the burst. Can anyone else relate to this?

 

We finished with the steroid burst on Tuesday, 02/23/10. My daughter symptoms improved while taking the steroids. By Friday(02/26/10) all the symptoms came back. She doing worse than before(the steroid burst). Today, her OCD was severe and she spent hours crying. I am very worried!

 

 

Here is a sad thought....

Maybe things were actully wors than we realize as we start this and move forward....things get mildly, slowly better till that seems the norm...then when everthing wears off and you go back to baseline you've actually forgotten how bad it was(it just seems wore)

 

I'll ask again...could there be a die off period with this that is ramping things up!!!!!

 

Fixit,

you bring up two really good points.

 

the part of things 'seeming' worse could very well be. when things are not so good and then we see some waning, that is promising, and then if things go the other way again, it will be noticed much more. If some say it was worse than before, then I'm sure they know, but I suppose it is all relative.

 

Also, the die off you asked about., I'm kind of interested in that as well. maybe die off isn't the right term, but what I would like to know is if antibiotics could actually cause a worsening before getting better, maybe because whatever infection it is working on is being fought off, and maybe the antibodies are coming on stronger to fight the enemy it percieves? I could be wrong, but I think the way antibiotics work, is that they start to kill off the infection, and so it causes antibodies to actually work a little harder to eradicate the enemy it percieves? (I'm talking in normal people, without PANDAS), and makes more antibodies to kill off the bacteria, until it finally wins out. so is it possible that when that is happening, (in PANDAS kids), the more antibodies that start being produced to kill off the infection, the more symptoms we may see because there are more antibodies to poke t the brain? maybe that is why some do well on the high dose? (remember, for PANDAS, it is not the strep or infection or bacteria that is causing these problems, it is the 'antibodies' to it).. I don't know if I'm saying this correctly, but that is my understanding. My son seems to have this reaction when presently doing abx (both times with azith, and now augmentin), so I'm wondering why. I don't want to give up and stop, but I'm tempted. I think I'm going to keep going tho, or I'll never know.

 

any thoughts on this?

 

Faith

[dcmom]

kcdc3-

Both of my daughters have done steroid bursts twice. Each of them had a worsening of symptoms after the burst was over 50% of the time. The younger one, was exposed to strep the week the burst was over- we attributed her worsening to that. The older one had a surge of symptoms after a cold, we did a burst then, mild improvement (or so we thought at the time), then when the burst was over she dropped off a cliff.

 

It is really hard to know what affects these things. I think where in the exacerbation they have the burst, may play a part in how they do after (maybe the best times are very beginning, or toward the end?). My younger one got a burst within the first few days of exacerbation after the flu- and it really stopped it, and she stayed improved. The other 3 bursts my girls did, the effects were temporary. (We have ocd, no tics)

[reactive]

Faith (and others):

 

I have mentioned this before, and although I am not 100% sure we are PANDAS vs TS vs autoimmune (PITANDS or other), I have noticed that getting my son on antibiotics right away did not stop the PANDAS symptoms with strep any sooner. He has not had strep (documented) since late last summer. But, when + for strep he will have major increase in tics the day his strep starts with mild sore throat and low grad fever, I have rushed in only to have a neg strep test and have to go back the next day and he would be +. With my son it really is like the infection triggers the symptoms and then we have to wait for it to die down, no matter how soon we diagnose the strep. I have calmed down a bit...but any time he may have strep I tend to rush in.

you bring up two really good points.