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Steroid burst success stories?


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Hi. Not sure what to do here and could use some thoughts. DS did five days on 10 mg of prednisone daily back on August. No remission in symptoms, plus many negatives - anger, extreme anxiety, physical aggression (only time in his life), expressing wish to kill or harm family members, etc.

 

Dr. B. was made aware of DS's previous experience on this medication. He told us on yesterday's call that he thinks the steroids NIH gave DS this summer didn't work because the dose was too low. He asked if we'd consider a short burst at a slightly higher dose. We told him that we could probably last for five days again, but that it would be very challenging. Just picked up the prescription, and it is for 21 days - beginning at 35 mg daily for a few days and then stepping down.

 

I have a call in to him to discuss and see if a shorter course is possible. But wondering if you'd give a kid who'd had a bad reaction to steroids more of them at a higher dose and for a much longer time interval....Also wondering if the reason for the longer use is because a shorter cycle couldn't possibly be worthwhile. Very hesitant to embark on this, but would certainly like to get DS to a better place symptoms-wise. Any advice?

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We tried a short, low-dose trial of medrol ( at the direction of our LLMD) we saw no appreciable benefit.

My child "crashed" symptom-wise shortly thereafter to the deepest, darkest depths of this disease. I never considered until now the timing....

However, 3 months later- after getting to a PANDAS doc and trying high-dose (60mg) steroids- by 10 days my child was a different girl. It was really amazing. We did a month starting at 60 tapering down after 10 days.

I know it is scary, but at such a small dose previously, perhaps Dr B is correct- maybe it was not enough to cause the effect we desire.

I do wonder (and do not take this personally, please) is there some sort of dividing line between an auto-immune or inflammatory PANS and not-PANS - that can be deciphered by a response to steroids? I thought these were used as both a diagnostic and therapeutic tool. And again, this is not directed to you, bigmighty-- but is there a point at which non-responders go another route and say- hey this whole PANDAS bit is not cutting it here?

 

I really sincerely hope you are able to try it. It has been so miraculous for 3 of my kids multiple times each.

 

Is your child on abx?

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I will agree that steroids have been miraculous for two of my kids, multiple times each.

 

10mg is VERY low.

 

We recently did a short burst for my (about) 45 lb daughter of: 40 mg/ day X 3 days, then 20 mg/ day X 2 days. She was in the start of a downward spiral due to a recent cold. The first two days made her VERY edgy, which on top of increasing OCD is tough. By the fifth day she was back to herself 100% and has remained there for about a month. We are seeing a possible slip now, but not sure yet (using advil, other factors could be contributing), so far it is VERY mild.

 

I agree with pow pow- I totally wonder about the responses to meds. My kids do not seem to benefit from antibiotics more than for treating an illness, yet their response to immune modulating therapy (pex, oral and IV steroids) have really been immediate and 100%.

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I think the important thing to understand is what you are trying to accomplish with the steroids. We tried a longer course (almost 40 days)at about the same initial dosage for my son who weighed about 45 lbs at the time. The first 15 days were very bad...he had rages which has never been a PANDAS symptom for him. His anger, anxiety and OCD all got worse and he had some serious physical symptoms that worried us and his pediatrician. Then suddenly everything got better and the last part of the taper was great in terms of the PANDAS symptoms (physical issues were still a concern). However, in the middle of this we found out that his Lyme test was positive and just as we ended the taper he got sick and everything came right back. He also gained a LOT of weight (people who saw him were visibly shocked) which may seem like a small thing compared to a PANDAS crisis but led to a whole new OCD concern and a lot of anxiety on his part about how 'fat' he had gotten. He still worries that he's fat even though he's lost all that weight.

 

We did this because we were about to undergo plasmapheresis and were told this was a required first step but I think there are a lot of potential issues with high-dose steroids that you should understand before using them. We were unable to do the PEX after he was diagnosed with Lyme anyway so for us it was not a great experience. My husband and I agreed that we would never use steroids again except in an extreme emergency. However, my son responds well to antibiotics so I can understand why people choose to use them if their children respond well to steroids.

 

My advice would be to make sure you have a local doctor on board to monitor your child and to talk to Dr. B about what he's trying to accomplish. Is this diagnostic or is it to stop a downward spiral? Ask about the potential side effects and then weigh the pros and cons. If your child is in a bad place...steroids might be worthwhile. We also see Dr. B and I think he's a smart and capable doctor and I would trust him to listen to your concerns.

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I think the important thing to understand is what you are trying to accomplish with the steroids. We tried a longer course (almost 40 days)at about the same initial dosage for my son who weighed about 45 lbs at the time. The first 15 days were very bad...he had rages which has never been a PANDAS symptom for him. His anger, anxiety and OCD all got worse and he had some serious physical symptoms that worried us and his pediatrician. Then suddenly everything got better and the last part of the taper was great in terms of the PANDAS symptoms (physical issues were still a concern). However, in the middle of this we found out that his Lyme test was positive and just as we ended the taper he got sick and everything came right back. He also gained a LOT of weight (people who saw him were visibly shocked) which may seem like a small thing compared to a PANDAS crisis but led to a whole new OCD concern and a lot of anxiety on his part about how 'fat' he had gotten. He still worries that he's fat even though he's lost all that weight.

 

We did this because we were about to undergo plasmapheresis and were told this was a required first step but I think there are a lot of potential issues with high-dose steroids that you should understand before using them. We were unable to do the PEX after he was diagnosed with Lyme anyway so for us it was not a great experience. My husband and I agreed that we would never use steroids again except in an extreme emergency. However, my son responds well to antibiotics so I can understand why people choose to use them if their children respond well to steroids.

 

My advice would be to make sure you have a local doctor on board to monitor your child and to talk to Dr. B about what he's trying to accomplish. Is this diagnostic or is it to stop a downward spiral? Ask about the potential side effects and then weigh the pros and cons. If your child is in a bad place...steroids might be worthwhile. We also see Dr. B and I think he's a smart and capable doctor and I would trust him to listen to your concerns.

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sorry for the multiple responses...computer got stuck and I must have clicked post multiple times! One other thing I should add is that I would suggest having your child tested for Lyme. Steroids are not recommended for children with positive Lyme tests and it might be a useful data point. I definitely wish I'd had those results prior to starting steroids.

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Month-long courses of prednisone have been key for my daughter.

 

10mg/day does sound low. My daughter was 42-43lbs and her highest dose was 20mg for the first week. Approximately 8mos later she relapsed, and was put on 30mg for the first week.

 

Good luck

Edited by Kayanne
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I used steroid bursts not tapers on both my kids and it was successful. But I will say I am always careful I have wiped out any live infection/bacteria first with antibiotics. My younger son gets gastro issues with his PaNDAS so we once had to add Flagyl for 7 days (for bacterial overgrowth in the gut) in addition to his azithro before we start a steroid burst. Another time he had impetigo on his forehead we had to wipe that out first and then because the antibodies wanted to continue to wreak havoc I gave him the steroid burst later and it pulled him out of the symptoms. My older son gets symptoms when he looses teeth due to the streptococcus mutans that live on teeth and I usually increase his antibiotic and once had to do a steroid burst as wells as the abx and he pulled out of it.

 

Steroids help the autoimmune response tame down because they lower the immune system that is why I make sure the infections are gone first. My son was also prescribed a taper and I had the doc change it to a burst. If you start steroids my sons doc said you can stop at 5 days but if you go past 5 days you have to taper down otherwise not safe to stop cold turkey. I did not want to committ to a 21 day taper incase things went south and as it happened a burst was all they needed to calm down the immune response.

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Thanks for the responses. I just got an e-mail back from Dr. B's office saying that it's all or nothing. So if we don't want to do the whole thing, we should probably skip it entirely. Part of me wants to try, because there is a chance it could put the remaining symptoms into remission. But I am scared.

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  • 2 weeks later...

Update - we went ahead and tried the steroids. DS is about 1/2 way through the 20 days. In spite of having an awful time on the low dose short-term steroids he took in the summer, he has had no significant problems on the higher dose. He is starting to reduce OCD symptoms and his anxiety is much lower. Hoping that we continue to see these positives as he starts to taper back off!

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EXCELLENT NEWS! We saw improvements from the 10 day- 2 week mark and it sounds like you are there. Keep it up! Let us know how things go. I think one of the most helpful pieces of advice any mom gave me regarding PANDAS-- was to measure week by week, not day by day. *that was from the great and wise sage, T.Mom*

Edited by PowPow
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bigmighty- when done with the steroid taper, consider immediately starting a taper of 5 days of advil. I read about using advil to further taper off of steroids on an MS website. They said they used it to avoid "rebound inflammation". We have done this several times with good results (could be coincidence, but I thought it made sense). I do something like- starting the day after the last steroid dose- 3 advil a day X 2 days, 2 advil a day X 1 day, 1 advil a day X 2 days.

 

Good luck!!!!!

 

Oh- BTW- this is an excellent time to do ERP therapy to accelerate the shedding of the ocd.

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