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croatian mum

steroids -how long do we wait to see the results

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Hello again,

 

 

 

as some of You know; my ds 12 had prednisone for 5 days for his loud (scream) vocal tic.During prednisone his tics were much worse. We are now 7 days post the last day of prednisone; and he is not getting any better.Our PANDAS doc. said to wait from 7 - 14 days after the treatment.

 

His tic is still so loud; he screams 'ahh' sooo loud; like he is in a big pain all day long..

 

he also takes 2 x 1000 mg Augmentin; flaxseed oil; B6; nd Nystatin (4 times a day) for yeast.

 

Are there any of You who got better after some time after prednisone? It's been 7 days after the treatment; he is totaly exausted; tired of all the squeeking and screaming.

I'm just guessing - but; if steroids have been helpful and even if it takes time to see the small steps improvement- wouldn't we be able to see at least some small improvement ?

 

We are really desperate now. Can we still hope and wait for 1 more week or do we need to do something ..?

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At one point, DS 14 was placed on a low dose of prednisone for five days. It made things much worse. Nearly a year later, when Dr. B. suggested a higher dose steroid taper, we were scared to try because he had done poorly on steroids in the past with no noticeable benefits. When we finally agreed to higher dose/longer term steroids - 21 days - DS finally started to improve. It was, in fact, two full months after DS finished the HD longer-term steroids that we began to see positive changes from it. So - yes, you can see steroid results much later. But five days of low dose may or may not have benefit. It does for some people, but not for others. Are you doing ibuprofen and, if yes, does it make any difference? Sending virtual hugs.

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Thank You for Your answer.

 

he was on 40 mg of pred. daily (1mg/kg).

 

We have tried ibuprufen before steroids but only for 2 days with no results; and since he was so really bad; we decided to try the steroids because he needed something to make him feel better, but it only got worse.

 

So, You are saying that it is possible to see results later? But we see no change at all. Some parents reported about slow improvement every day was better, but we have no changes at all.

 

Only at the beginig of steroids he had 1,5 hour of beeing tic free. That's all.

 

Your answer gives us hope. I'm just not shure how long will he be able to go on like this; he is really suffering..and we are too. Looking at Your own child in such a difficult situation and not having anything to make him feel better is the worse feeling ever...

big hug to You too

Edited by croatian mum

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Have you talked to the doctor about NAC? It seems about 50% of families see a positive benefit from supplementing N-acetylcysteine. It did not help DS, but I know many others who were helped by it. Perhaps you should ask the doc if it's something your DS can try?

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Hi

I've been following your post and hoping to learn a little something. I had wanted to post on a similiar topic but never got around to it. DD 6 is dx w/ PANDAS , LYME, & Bartonella. She has been on Azithromycin daily since 3/12 and Cipro daily since 8/12. A facial, head, & neck tic started it all for us back in Oct. 2011 (among other PANDAS symptoms) but she improved when she was on Azithromycin. Suspected Lyme & Bartonella gave us new symptoms last summer but adding Cipro in August seemed to really help her healing. We started to see the hint of the tic coming back in late December but overall she was doing very well. Dr. B put her on a 13 day steroid taper to address a suspected sinus infection / inflammation. We were apprehensive to use steroids bc we had read that it can make things worse.

 

On day 4 of steroid taper we saw an explosion of tics - old ones and new ones (very loud & frequent throat clearing). Tics stayed the same pretty much day 4-7. We kept her home from school because the tics were very pronounced and we knew she would be embarrassed. On the first day of tapering down the loud tics only occurred right before bed when she was really tired. The frequency of the tic has decreased but we are still seeing tics. She completed 13 day taper 3 days ago. Amazing results in terms of behavior - so cooperative, no medicine battles, and is doing some great academic work. Every transition is a battle when she is not well. It has been so long since we have seen this healthy side of her that we nearly forgot what she was really like. :(. We are praying the tics subside. On the way to school she tics like crazy and told me she is trying to get them all out before school because she holds them in at school.

 

Hoping you get the results you are praying for !! Anyone have any advice on what can help tics.? Supplements etc...

 

Wishing you the best Croatian Mum - Teri

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Hello again,

 

 

 

as some of You know; my ds 12 had prednisone for 5 days for his loud (scream) vocal tic.During prednisone his tics were much worse. We are now 7 days post the last day of prednisone; and he is not getting any better.Our PANDAS doc. said to wait from 7 - 14 days after the treatment.

 

His tic is still so loud; he screams 'ahh' sooo loud; like he is in a big pain all day long..

 

he also takes 2 x 1000 mg Augmentin; flaxseed oil; B6; nd Nystatin (4 times a day) for yeast.

 

Are there any of You who got better after some time after prednisone? It's been 7 days after the treatment; he is totaly exausted; tired of all the squeeking and screaming.

I'm just guessing - but; if steroids have been helpful and even if it takes time to see the small steps improvement- wouldn't we be able to see at least some small improvement ?

 

We are really desperate now. Can we still hope and wait for 1 more week or do we need to do something ..?

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When our older d was first severely affected we did the first prednisone burst in the way that Dr K suggests.

 

Dr K had told me that IF we were to see an effect from the prednisone it would be sudden and obvious. I kept pressing him as to what "obvious" meant, and he repeatedly said, "You will know if it works."

 

We waited and saw nothing for two+ weeks after the prednisone burst ended, and then she "cleared" very obviously and very suddenly one evening. It was indeed obvious.

 

Don't despair yet -- if I remember correctly I think Dr K said that it could take up to 3-4 weeks.

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Thank You all for Your answers.

 

Today is day 10., after prednisone. Still no improvement in tics. There are moments when his mood and behavir are better;and I'm allready starting to have some hope and than the hiperactivity kicks again. And than everything is a battle..he runs, he jumps; he is talking constantly whiteout control; explaining all the details. And he speaks so loud just to hide his loud tic which is absolutely immposible - so he sounds even worse.

On the other side; now when I'm thinking back, he is maybe more calm the last two days.

 

He also didn't go to school; and after beeing at home for 7 days; he decided to go. It is the same like with Teri's daughter. ''On the way to school he tics like crazy and told me he is trying to get them all out before school because she holds them in at school.'' The same when he comes back from school, he tics all the time.

 

he also told me that he can not hold them in school for long time, and that he tics is school also; and that he's fine with it because everybody allreday know he has tics..But, the truth is that he will never admit to me how embaressed he really is because of them. But I know it - I know him so good to know.

 

About the tics - don't know what else to do. It's hard to be here and pretand that nothing is going on while the whole house is one big echo of his scream. I'm also waiting for them to stop, hoping that one day he will woke up and they will be gone. But as soon as he says good morning the tic is here.

 

I'm reading a lot of posts on this forum, and for most of people here there was a happy end and steroids have helped;but we see nothing; no changes at all, maybe just the frequency of his tics is not that often as while on steroids. Now he tics every 5-7 seconds. While on steroids it was every 2 seconds. He is exhausted; tired; don't know how much more of this he can take.

So, there is not much we can do right now. You all gave us hope we will wait for few more days and pray.

 

Thank You all..

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Have you tried a different antibiotic? ivig? we just started a bad flare and the tics came right back (on monday)....got on a different antibiotic and they stopped. any allergies?....we did not think there were any allergies at all....but, after testing my dd is allergic to cats (we had one), dust (so i dust a lot now) and a few other things

 

also...we NEVER bring up anything about my dd's tics...(but, her tic is the loud throat clearing/grunt)....if your son's is really loud I can see how you can't ignore it...so sorry you are going through all of this....praying the steroid kicks in!

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We first tried a steroid burst in late November. We did it while on Augmentin,biaxin and valtrex. It did nothing. We just tried it again last Saturday and it seemed to help (we are on Doxycycline now). Day 7 (2 days after last dose), things started slipping again. Now DS (14.5) is on a 4 week taper, today is day 3 and so far things seem to be improving a teeny tiny bit each day.

T.Anna

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Well, in our case he get's better for 1-2 hours every 2 days(meaning that he tics every 8-10 seconds; and that he is able to said 1 sentence whiteout the scream); and than our hopes go up. If one day he is better, the next day he tics constantly. It goes up and down, but generaly maybe some improvement in 2-3%. That's all. Today is day 13.

Still hope one day he will woke up and the tics will be gone.

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so, for everybody who have been hepful; but also for the others reading this post; I only want to let You know that my son's vocal tic has improved!He still has some eye rollig; neck tics; but the most terrible scream-tic is much better.

 

It took exsactly 14 days after prednisone to see some changes. He still tics; and we usualy have one good and one worse day; he tics sometimes even for hours; but than he calmes and his tics are not as near as they were.

 

so for everybody here; for Your answers and for those who pm me; a big thank You for Your support!It was a horrible month of despair; craying; feeling lost..I really admire his strenght to go true this..

 

hope he will stay in this condition at least for some time untill we prepare all the med.papers for new IVIG.

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