Talk to me about the steroid taper!

[Stephanie2]

This is the first tiime we have done a steroid taper in my house, previously all bursts with both kids, which were successful.

 

My 2 yo has definitely responded (not screaming bloody murder at bedtime, not picking his lip and ears until they bleed, just less all around compulsions), however he is just so cranky! I already posted about this, but am looking for more feedback (don't mean to be a forum hog! it's just that I can usually figure out what is going on with my boys, but right now I am stumpted).

 

So here are my question:

1. what have your kids acted like while on the steroid taper?

2. how quickly did you notice improvement in pandas symptoms?

3. what were your kids like right after the steroid taper?

4. how long did the effect last?

5. any exacerbation of yeast/bacteria?

 

Thanks!

Edited June 23, 2010 by Stephanie2

[Kayanne]

When you say "taper", could you be more specific....is he tapered off now, or just down to a different dose?

 

My daughter took pred twice...each time for at least a month...the first week at full strength---we definitely saw some more intense screaming and raging.

Then she took the second week at half the original dose she seemed calmer. For us with each drop down of dosage, she seemed more like herself again....I need to add that my daughter doesn't have any problems with co-infections or yeast.

[dcmom]

I am imagining, like Kayanne said, you are talking about a 4 week Rx, tapering dosage for the last 3 weeks?

 

My kids responded really well. I have done a total of 4 bursts ( 2 each). Response varied, but all were positive.

 

I would see decrease in pandas symptoms as soon as 2 doses, and up to as long as almost 2 weeks into burst. On two occasions, they maintained the progress, although I did see a slight bump in symtpoms toward or at the end of Rx, which did resolve. On two other occasions, the pandas symptoms started creeping back after burst (those two occasions were prior to their treatment with pex).

 

Most of the time I saw some increased appetite, irritibility (mild, and different than pandas) and difficulty getting to sleep. All of these symptoms were mild, not really noticeable until pandas symtpoms decreased, and a picnic compared to pandas. All of these side effects disappeared as soon as Rx was done.

 

Fingers crossed, we have not had any yeast issues.

[momaine]

This is the first tiime we have done a steroid taper in my house, previously all bursts with both kids, which were successful.

 

My 2 yo has definitely responded (not screaming bloody murder at bedtime, not picking his lip and ears until they bleed, just less all around compulsions), however he is just so cranky! I already posted about this, but am looking for more feedback (don't mean to be a forum hog! it's just that I can usually figure out what is going on with my boys, but right now I am stumpted).

 

So here are my question:

1. what have your kids acted like while on the steroid taper?

2. how quickly did you notice improvement in pandas symptoms?

3. what were your kids like right after the steroid taper?

4. how long did the effect last?

5. any exacerbation of yeast/bacteria?

 

Thanks!

pandas symptoms decreased a TON while on taper. improved between 7-13 days depending on time. began to lose improvement when taper ended. effects lated a week or two longer than the taper. dd struggled with yeast until she was on an oral medication to prevent yeast. no noticalble change in that with the prednisnone though. the yeast problem comes from the antibiotics she is on.

[Fixit]

I wanted to bump this...

i've postponed it before...but may start it tomorrow...

has anyone had a longer lasting effect than a couple of weeks...

like 25-50% long term inprovement

 

 

 

This is the first tiime we have done a steroid taper in my house, previously all bursts with both kids, which were successful.

 

My 2 yo has definitely responded (not screaming bloody murder at bedtime, not picking his lip and ears until they bleed, just less all around compulsions), however he is just so cranky! I already posted about this, but am looking for more feedback (don't mean to be a forum hog! it's just that I can usually figure out what is going on with my boys, but right now I am stumpted).

 

So here are my question:

1. what have your kids acted like while on the steroid taper?

2. how quickly did you notice improvement in pandas symptoms?

3. what were your kids like right after the steroid taper?

4. how long did the effect last?

5. any exacerbation of yeast/bacteria?

 

Thanks!

[Kayanne]

Yes, my dd was 98% at the end of her steroid treatment...100% 6 weeks after and stayed that way until her siblings got strep. Then the second time, she was 100% at the end of the treatment in April, and is still there.

[Fixit]

Thanks for posting..i love hearing it...

 

PS i do have to watch for yeast though... so many years. with abx and no probiotics or anitfungals...

we are still recovering a little from that....

 

 

Yes, my dd was 98% at the end of her steroid treatment...100% 6 weeks after and stayed that way until her siblings got strep. Then the second time, she was 100% at the end of the treatment in April, and is still there.

Edited June 30, 2010 by Fixit

[Fixit]

I have another question...

is there concern of rebound effect like there is with a burst???

 

Yes, my dd was 98% at the end of her steroid treatment...100% 6 weeks after and stayed that way until her siblings got strep. Then the second time, she was 100% at the end of the treatment in April, and is still there.

[Kayanne]

I have another question...

is there concern of rebound effect like there is with a burst???

 

Yes, my dd was 98% at the end of her steroid treatment...100% 6 weeks after and stayed that way until her siblings got strep. Then the second time, she was 100% at the end of the treatment in April, and is still there.

I don't know the answer to that...I think it really is a case by case basis. I am under the impression that if a child is not 100% or very close to it after the month of steroids, then IVIG or Plasmapheresis is needed.

 

I think my daughter's case is a minority on this board...her PANDAS was caught and treated early...that is why I think she responds so well to prednisone (so far)

 

Fortunately, we have not had to deal with yeast...but I have read that prednisone can cause a yeast infection to get worse....so do be careful.

[Stephanie2]

Since Fixit bumped this back up, I will give an update on my son's taper since today was the last day. I would say that there is at least a 50% improvement in obsessions/compulsions. The big compulsion was to pick at his lip and ears until they bled/got infected! This went on for 6 months and with the steroid that is gone. However, we are nowhere near 100% so we will keep moving forward. Tonight I am starting LDN and I am also preparing paperwork for IVIG coverage...

 

Stephanie

[Kayanne]

Since Fixit bumped this back up, I will give an update on my son's taper since today was the last day. I would say that there is at least a 50% improvement in obsessions/compulsions. The big compulsion was to pick at his lip and ears until they bled/got infected! This went on for 6 months and with the steroid that is gone. However, we are nowhere near 100% so we will keep moving forward. Tonight I am starting LDN and I am also preparing paperwork for IVIG coverage...

 

Stephanie

I'm really glad you are seeing improvements.

 

How long and what was the initial dose? Just curious.

Edited July 1, 2010 by Kayanne

[MarcyJ]

Hi. My son is strictly PANDAS . He was misdiagnosed for 6 years all MH DX and many many such meds that made him worse finally got rich DX and antibiotic and Anti-inflammatory meds, and with Behavioral therapy saw huge improvement last 3 months of school last year ( bust still long way to go) school paid for a $30K summer school based summer camp where the kids and staff were sick every single week, my son flared so bad everyday, it set him so far back in his recovery ( poop smearing , aggression which we had 98% decreased, peeing his pants all day long) complete nightmare after so much hard work , therapy in-house 6 days a week, weaned detoxed off all psych meds on antibiotics sine March 2016 and special contract first ever signed with my private providers in a public school setting. So my doctor ( only pedi that is a PANDAS specialists ) currently has my son on a 65 day long steroid taper he started his at the highest medical dose possible 60mg. We currently have about 20plus days left and he is on 12.5 mg and just started back to school part time. Doctor says the higher the dose and the longer the taper the better chances you have of suppressing the immune system, ( NO LYME) and you only have to do it 1 time. It will stop the immune system from creating the anti-bodies that attack the brain when he is around sick children ( flaring) hopefully. He also said the MORE aggressive he is the BETER the taper is working and the longer it will continue to work. Well my son is still VERY VERY aggressive, Shorter burst. He is still flaring too when around sick kids or has a cold right now. So any advice ( we do have meeting with doctor today) our doctor is very smart since he is a pediatrician and is trained on how to use steroids unlike most PANDAS docs that are psych docs and works with top rheumatologist in Boston. BUT this is his first Taper. he has done bursts but never a taper, But he is done the research and works with the top PANDAS experts in the field and he feels confident this is the right way to do it.  I am a nervous wreck. My son had horrible head pain AE. 3 Aleve a day. Then when we started it went away. But then 20 days in he was exposed to respite care proved who was very very ill and we believed he flared and the head pain came back. But it's gone again. But it sounds like from other posts it comes back as soon as the taper is over? And it also sounds like he should be not aggressive anymore. But 12.5mg is still a very high dose for a 9 year old? Maybe we won't see the lessening of aggression until 5mg? I know the doc said the more aggression the better but everyone else said their kids got much calmer at 2 weeks in? Anyone suggestions? Advice? Anyone ever do a 60 plus day taper starting at 60mg going all the way to 5mg? thanks so much for any feedback,

[MarcyJ]

Hi. My son is strictly PANDAS . He was misdiagnosed for 6 years all MH DX and many many such meds that made him worse finally got rich DX and antibiotic and Anti-inflammatory meds, and with Behavioral therapy saw huge improvement last 3 months of school last year ( bust still long way to go) school paid for a $30K summer school based summer camp where the kids and staff were sick every single week, my son flared so bad everyday, it set him so far back in his recovery ( poop smearing , aggression which we had 98% decreased, peeing his pants all day long) complete nightmare after so much hard work , therapy in-house 6 days a week, weaned detoxed off all psych meds on antibiotics sine March 2016 and special contract first ever signed with my private providers in a public school setting. So my doctor ( only pedi that is a PANDAS specialists ) currently has my son on a 65 day long steroid taper he started his at the highest medical dose possible 60mg. We currently have about 20plus days left and he is on 12.5 mg and just started back to school part time. Doctor says the higher the dose and the longer the taper the better chances you have of suppressing the immune system, ( NO LYME) and you only have to do it 1 time. It will stop the immune system from creating the anti-bodies that attack the brain when he is around sick children ( flaring) hopefully. He also said the MORE aggressive he is the BETER the taper is working and the longer it will continue to work. Well my son is still VERY VERY aggressive, Shorter burst. He is still flaring too when around sick kids or has a cold right now. So any advice ( we do have meeting with doctor today) our doctor is very smart since he is a pediatrician and is trained on how to use steroids unlike most PANDAS docs that are psych docs and works with top rheumatologist in Boston. BUT this is his first Taper. he has done bursts but never a taper, But he is done the research and works with the top PANDAS experts in the field and he feels confident this is the right way to do it.  I am a nervous wreck. My son had horrible head pain AE. 3 Aleve a day. Then when we started it went away. But then 20 days in he was exposed to respite care proved who was very very ill and we believed he flared and the head pain came back. But it's gone again. But it sounds like from other posts it comes back as soon as the taper is over? And it also sounds like he should be not aggressive anymore. But 12.5mg is still a very high dose for a 9 year old? Maybe we won't see the lessening of aggression until 5mg? I know the doc said the more aggression the better but everyone else said their kids got much calmer at 2 weeks in? Anyone suggestions? Advice? Anyone ever do a 60 plus day taper starting at 60mg going all the way to 5mg? thanks so much for any feedback,