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Prednisone burst - is there a storm before the calm?


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Dd, age 6, is on her 5th day of a 5 day Prednisone burst. I had such high hopes that we'd see dramatic improvement from the Prednisone, but we haven't. If anything dd's mood has become worse. As the days of the burst have progressed she's become more and more sensitive, moody & rage filled. Her anxiety has remained the same throughout the burst. I can't tell if her tics have improved or not. At her worst, she tics every few seconds all day long (except during sleep)...so up to 10000 a day. Prior to starting the burst, tics were about 1 every 2-3 minutes. For the past couple of days the tics seem to come in spurts. She'll have a 15 minute period where she'll tic every few seconds...but then they'll stop and she'll have no tics at all fro 10-15 min. So, she's having definite blocks of time that are tic free, but then they'll come rapid fire for a chunk of time.

 

I'm so discouraged about all of this. I'm wondering if we're even on the right path...is this really PANDAS (Dr. T & 2 other neurologists feel it is), or are we dealing with TS? We had such a fantastic response to a 20 day course of Biaxin in March. Tics DRAMATICALLY decreased, anxiety very minimal, and her mood was the best it has EVER been. Once off Biaxin, we saw an almost immediate increase in symptoms, and then upon starting Azith. on 4/14/10 (which she is still on) we saw improvement again.

 

I have no idea if the dose of prednisone was too low. She weighs about 50 pounds, and the dose is 15 MG per day. Or...if she simply does not have PANDAS.

 

We are currently awaiting the results from the Cunningham test, that we sent off last week...so that will hopefully clarify things one way or another.

 

What I'm wondering is if anyone else out there saw and increase in rage and moodiness during the burst in a child this young? (From what I've read, I thought that young kids respond early in the burst.)

 

Any responses are welcome. I'm having a tough time dealing with all of this.

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In some people, steroids do affect moods and actually make them more aggressive. Also, it has been said in here that if the child had Mycoplasma P, the steroids could worsen things intially. Is she still on an antibiotic? She really needs to be on one while doing a steroid.

 

As for the TS connection and steroids, are the tics over the top since you started the steroid?

Edited by Vickie
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In some people, steroids do affect moods and actually make them more aggressive. Also, it has been said in here that if the child had Mycoplasma P, the steroids could worsen things intially. Is she still on an antibiotic? She really needs to be on one while doing a steroid.

 

As for the TS connection and steroids, are the tics over the top since you started the steroid?

 

Yes, she is on Azithromycin right now. She was tested for mycoplasma last month, and she doesn't have this.

 

No, I would not say tics are over the top since starting. Over the top in my book is how she was during her sudden onset of tics in February, when she was ticcing ALL day long, and had many different tics (knee bends, facial grimaces, abdominal jerks, facial grimaces, throat clearing, neck extensions & shoulder shrugs). Many of these would happen at the same time, or one after another. She was literally exhausted at the end of the day from ticcing so much. -- What we're seeing now, is mostly the throat clearing, and she'll have periods of time when the throat clearing is every few seconds for about 15 minutes...and then it all stops and she's tic free for the next 10-15 minutes.

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Worriedmommy, the steroids did not help my son that much either-- only very very subtly-- there was an improvement on the last day he was at the highest dose-- basically a one-day improvement-- that disappeared as soon as we started the taper down.

 

I know that the few times I've had to take prednisone (for poison ivy), it makes me very jittery and emotionally volatile. So I think you should try, as hard as it might be, to separate what might be prednisone side effects from the PANDAS symptoms. I think if there's increased moodiness, it could be the prednisone.

 

Good luck. Don't lose hope.

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Dd, age 6, is on her 5th day of a 5 day Prednisone burst. I had such high hopes that we'd see dramatic improvement from the Prednisone, but we haven't. If anything dd's mood has become worse. As the days of the burst have progressed she's become more and more sensitive, moody & rage filled. Her anxiety has remained the same throughout the burst. I can't tell if her tics have improved or not. At her worst, she tics every few seconds all day long (except during sleep)...so up to 10000 a day. Prior to starting the burst, tics were about 1 every 2-3 minutes. For the past couple of days the tics seem to come in spurts. She'll have a 15 minute period where she'll tic every few seconds...but then they'll stop and she'll have no tics at all fro 10-15 min. So, she's having definite blocks of time that are tic free, but then they'll come rapid fire for a chunk of time.

 

I'm so discouraged about all of this. I'm wondering if we're even on the right path...is this really PANDAS (Dr. T & 2 other neurologists feel it is), or are we dealing with TS? We had such a fantastic response to a 20 day course of Biaxin in March. Tics DRAMATICALLY decreased, anxiety very minimal, and her mood was the best it has EVER been. Once off Biaxin, we saw an almost immediate increase in symptoms, and then upon starting Azith. on 4/14/10 (which she is still on) we saw improvement again.

 

I have no idea if the dose of prednisone was too low. She weighs about 50 pounds, and the dose is 15 MG per day. Or...if she simply does not have PANDAS.

 

We are currently awaiting the results from the Cunningham test, that we sent off last week...so that will hopefully clarify things one way or another.

 

What I'm wondering is if anyone else out there saw and increase in rage and moodiness during the burst in a child this young? (From what I've read, I thought that young kids respond early in the burst.)

 

Any responses are welcome. I'm having a tough time dealing with all of this.

 

My son just finished the steroid burst and we are on the 9th day. He too has questionable TS. The 5 days on the pred was tough with the 5th being the worst. He had raging OCD the 5th night and lots of tics. Dr. K said not to worry about the behaviors during the 5 days. Focus on the behaviors from day 6-21. Starting from day 6 we have noticed significant calming (almost like he is in a trance). He has had 1-2 tantrums each day but shorter and much less intense. He is different. As for the tics, they are much better! He too tics as frequently as your child some days. The mornings start with no tics and by the afternoon he has some-but much less. My son also tested positive for Mycoplasma P so he does currently have an infection. Hang it there. I wish your child the best! Andrea

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I, too, question whether pred actually did any good while ds was on it. He was on a 30 day course prescribed by Dr. L (high dose for 2 weeks, then taper down for 2 weeks). At best we traded one source of irritability/rage for another. We think we saw some PANDAS improvements, but the 'roid rage was no fun at all. Certainly no lasting positive effects that we can be sure of. He also developed his first ever vocal tic after stopping the steroids. But, he sure does have PANDAS. The question is, I guess, are there other triggers than strep which could be made worse by steroids.

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My dd doesn't see the benefits of steroids until between days 7 and 13, then the difference is dramatic. We go from being in complete crisis to being able to function at a level that at least makes it possible for us to go on as if life were normal, though we all know its not. But we can go places and she can shower and brush her teeth and make headway.

 

A side effect of prednisone is anger.

 

The benefits you saw from antibiotics sure make it sound like your child has PANDAS. If he/she only had OCD or TS, they would not benefit from antibiotics. Keep up the hope.

 

Angela

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Our DS9's behavior also got worse whilst on the 5 days of steroids (60 mg/day) - I almost stopped giving him them, tics were bigger, he was very aggressive. But he improved dramatically at the end of day 6 and held that improvement for 4-5 days, then slowly worsened. The anxiety that he had was really improved and is only just creeping back in now, a couple of months later.

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Our DS9's behavior also got worse whilst on the 5 days of steroids (60 mg/day) - I almost stopped giving him them, tics were bigger, he was very aggressive. But he improved dramatically at the end of day 6 and held that improvement for 4-5 days, then slowly worsened. The anxiety that he had was really improved and is only just creeping back in now, a couple of months later.

 

Does prednisone stay in the body for 2 weeks? Does anyone know about how long?

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My 6 yo, 4 yo and I are all on Day 6 of a 15 day burst. They were definitely worse the first few days, then extremely tired at end end of the day yesterday, and today, they are fantastic. Zero tics, zero rage, zero whining, all smiles. Maybe still a bit (or more) hyper, but they are enjoying the playground while I sit. I just hope that I'm next in line for the great mood and energy. I am wiped out, still.

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Our DS9's behavior also got worse whilst on the 5 days of steroids (60 mg/day) - I almost stopped giving him them, tics were bigger, he was very aggressive. But he improved dramatically at the end of day 6 and held that improvement for 4-5 days, then slowly worsened. The anxiety that he had was really improved and is only just creeping back in now, a couple of months later.

 

Does prednisone stay in the body for 2 weeks? Does anyone know about how long?

I asked the pediatrician this just a few days ago (he didn't want her to get IVIG too soon after steroid because would confuse which is causing the effect), he said about 2 weeks. But we're just doing the 5 day.

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My son just finished the steroid burst and we are on the 9th day. He too has questionable TS. The 5 days on the pred was tough with the 5th being the worst. He had raging OCD the 5th night and lots of tics. Dr. K said not to worry about the behaviors during the 5 days. Focus on the behaviors from day 6-21. Starting from day 6 we have noticed significant calming (almost like he is in a trance). He has had 1-2 tantrums each day but shorter and much less intense. He is different. As for the tics, they are much better! He too tics as frequently as your child some days. The mornings start with no tics and by the afternoon he has some-but much less. My son also tested positive for Mycoplasma P so he does currently have an infection. Hang it there. I wish your child the best! Andrea

 

Still hoping (OK..praying!!) for a dramatic turnaround. It's now day 6 (her 1st day off prednisone) and dd was an emotional wreck again this morning. She started the day with a complete melt down about what to wear. She was literally screaming at me and hysterical. Then 20 minutes later she hugging & kissing me talling me how much she loves me.

 

She's at school now, so perhaps things will start to turnaround by this evening.

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My ds, also 50lbs, was on a 40mg steroid burst. We did see improvement while on the 40mg steroid, but as soon as we started tapering to a lower dose, symptoms returned. Perhaps you should discuss with the prescibing doctor whether the dose is high enough to see improvement?

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