Steroids cause return of symptoms

[natterbus]

I was wondering if anyone can offer direction for further research or thoughts. DS8 was diagnosed with Asp 2 years ago. Aggression was a main component of our concerns. 7 months ago headaches (and only headaches) led to an unexpected strep diagnosis. As treatment wrapped up, we suddenly had a child we had rarely had glimpses of! He was so much calmer, less aggressive, kind and with fewer sensory issues. 3 more times over the next 7 months his behavior deteriorated, only to be diagnosed immediately with strep. As we learned to deal with this, I could predict when he had strep well before any traditional physical symptoms showed up. 2 pediatricians mentioned PANDAS. A strep specialist said it is possible but irrelevant bc there is nothing to be done about it.

 

Sorry for the long history. The issue is that 10 days ago ds had a croup-like virus. He has asthma and breathing was poor so he was given prednisone for 3 days. I only allowed it because I had read a short burst of steroids could help with PANDAS, so I figured it couldn't make it any worse. It had been 5 years since he'd needed pred, but true to his history, day 1 resulted in violent mood swings. Now we seem to be right back were we started before we figured this out 7 months ago. He's angry, mean, impulsive and sensory issues have returned. We're 7 days past pred and it should be out of his system by now. I had him tested for strep and it was negative.

 

Any possibility that Pred actually aggravated the issue rather than helping? Any ideas what to do?

 

Thanks - Natterbus

[EAMom]

2 pediatricians mentioned PANDAS. A strep specialist said it is possible but irrelevant bc there is nothing to be done about it.

 

That sounds like a completely unhelpful "strep specialist"...obviously not a PANDAS specialist.

 

Is you son on antibiotics currently? Or prophylactic antibiotics?

 

It does sound strange that steroids would make PANDAS symptoms worse. I know my non-PANDAS dh did get very grouchy on steroids given several years ago for a lung condition.

 

Is it possible that the steroids (given w/out antibiotics) allowed an undectected strep infection to "take hold" even more?

 

Or perhaps the croup-like virus stimulated a PITAND response in your PANDAS son? Many people on this board notice symptom exacerbations with non-strep illnesses. My own dd just went through a symptom exacerbation with Fifth's Disease.

 

Also, what was your son's pred dose (and his weight) for the 3 days he was on it? Perhaps he actually only received an anti-inflammatory dose, not high enough to act as a "steroid burst" and affect his PANDAS one way or the other. (Does anyone know what the steroid burst dose is offhand?...for some reason I though it was a relatively higher dose?)

 

Also, when you say "true to his history"...does that mean steroids have caused violent mood swings in your son in the past?

[amy s]

The prednisone dose we gave our pandas dd was 1mg/kg/day for 5 days. Good luck, natterbus. Sorry to hear your child worsened.

[Chemar]

so sorry to hear this

 

I know that steroid bursts help many who have PANDAS but I have long cautioned about their possible bad effect on anyone with TS as my husband had a dreadful reaction to a prednisone burst he was given for sciatica/herniation pain

this was many months ago but some of the side effects it had are still plaguing him and his tics have not been this elevated since childhood (he is mid 60s now)

 

I hope you manage to stabilize your precious child again soon

[chrisw]

This sounds similiar to an episode my son had in Dec. 2008. He became ill with a fever, sore throat, etc. I took him in for a throat culture, which was neg. The Dr. said it was viral. Meanwhile, my son's PANDAS symptoms were escalating. He then woke up in the night with croup. Most MD's will tell you that kids should outgrow croup by our kids ages. My son is 9. He was diagnosed with "asthma that presents as croup" when he was about 6. This croup ONLY occurs with illness. We returned to the Dr. because of the croup, and he did a chest x-ray and diagnosed a "round pneumonia". He obviously felt it was bacterial, because he prescribed Azith. That was out first experience with Azith. His response was incredible. By day 2 on the abx. he was a new boy regarding his PANDAS. I have to wonder how many times he had croup in the past, and it was really a bacterial issue. When he was younger, we often got a steriod for this issue. I remember that it did help his croup. I believe Dr. K mentions bacterial pnuemonia on his website as instigating PANDAS? Is it possible that this is bacterial pnuemonia? Might be worth another trip to the Dr. Hope things improve for you and your son.

Christie

[lss]

The prednisone dose we gave our pandas dd was 1mg/kg/day for 5 days. Good luck, natterbus. Sorry to hear your child worsened.

 

Amy,

 

I was wondering what how old your dd is and what the weight is? My doctor gave us the methylprednisolone at 16mg/3 tablets daily for 5 days. We have not done it yet, but after reading your post, I'm wondering if this is high. My dd is 9 almost 10 and weighs about 89/90lbs.

 

Thanks,

 

Linda

[colleenrn]

Could it be that your child has a bacterial infection and the steroids made it worse? Steroids suppress the immune system allowing the bacteria to proliferate. Read about mycoplasma pneumonia. Dr. K says it triggers PANDAS and given your child's symptoms (ESPECIALLY the croupy cough) I am wondering if that is maybe what is going on.

Was the doctor saying that if strep were the trigger, that there is nothing you can do about the strep??

Colleen

[pmoreno]

The prednisone dose we gave our pandas dd was 1mg/kg/day for 5 days. Good luck, natterbus. Sorry to hear your child worsened.

 

Amy,

 

I was wondering what how old your dd is and what the weight is? My doctor gave us the methylprednisolone at 16mg/3 tablets daily for 5 days. We have not done it yet, but after reading your post, I'm wondering if this is high. My dd is 9 almost 10 and weighs about 89/90lbs.

 

Thanks,

 

Linda

 

 

Linda,

Gaby also had 1 mg/kg of bodyweight daily for 5 days. That is a little more than what your daughter was prescribed so I don't think the dose is all that high. I think it's just a matter of how a particular child reacts to steroids. They generally make you pretty hyper so if that child is having symptoms that are already somewhat aggressive or anxious, it's possible that it could exaggerate that kind of response. I remember that when Gaby took her steroid burst it was during a time when she was very spacey and uncommunicative. She wasn't aggressive - she was quiet and very introverted - you could barely get her to tell you anything. She looked like she was half asleep most of the time. After a few days of the steroid burst - she suddenly came home from school one day talking a mile a minute - you couldn't stop her. Pat

[michele]

A person I have talked to who did the three day dose of steroid burst without tapering off and finally saw a relief in PANDAS symptoms said her tics and became worse before better. She credits the steroids for reversing her symptoms. She also did IVIG (worse before better)but still credits the steroids to her improvement. SSRI's didn't help her either. She still takes zithromax two days a week and zyrtec for allergies at age 21. She did the treatments at age 10. Still has relapses when sick also.

 

Michele

I was wondering if anyone can offer direction for further research or thoughts. DS8 was diagnosed with Asp 2 years ago. Aggression was a main component of our concerns. 7 months ago headaches (and only headaches) led to an unexpected strep diagnosis. As treatment wrapped up, we suddenly had a child we had rarely had glimpses of! He was so much calmer, less aggressive, kind and with fewer sensory issues. 3 more times over the next 7 months his behavior deteriorated, only to be diagnosed immediately with strep. As we learned to deal with this, I could predict when he had strep well before any traditional physical symptoms showed up. 2 pediatricians mentioned PANDAS. A strep specialist said it is possible but irrelevant bc there is nothing to be done about it.

 

Sorry for the long history. The issue is that 10 days ago ds had a croup-like virus. He has asthma and breathing was poor so he was given prednisone for 3 days. I only allowed it because I had read a short burst of steroids could help with PANDAS, so I figured it couldn't make it any worse. It had been 5 years since he'd needed pred, but true to his history, day 1 resulted in violent mood swings. Now we seem to be right back were we started before we figured this out 7 months ago. He's angry, mean, impulsive and sensory issues have returned. We're 7 days past pred and it should be out of his system by now. I had him tested for strep and it was negative.

 

Any possibility that Pred actually aggravated the issue rather than helping? Any ideas what to do?

 

Thanks - Natterbus

[natterbus]

Wow! Thanks for all the responses. I'll try to respond.

 

The pred dose probably wasn't high enough to help PANDAS if a high dose is needed. I threw out the bottle yesterday unfortunately so cannot check without calling the dr. But considering I alse halved the dose on day 3 due to mood swings, it was probably not a helpful dose for PANDAS. We were just trying to help his breathing without worsening the PANDAS.

 

He could have bacterial pneumonia. Pneumonia has been rampant this year here. Even I went to the dr last week thinking I must have it, my cough and asthma were so bad. Both DS and I were told our lungs were clear but that could explain the worsening PANDAS symptoms if the dr missed something. DS#3 came down with an ear infection this morning. Is there a reference for the penumonia causing PANDAS symtpoms or is it anecdotal?

 

Perhaps the virus set him off. Our experience in the past has actualy been that right before he comes down with a virus, the symptoms subside, and stay lower during the illness, so it seems unlikely. Of course if it were bacterial, perhaps that is the explanation. It didn't occur to me that ped without antibiotics would make him more susceptible.

 

The strep expert did say that there was nothing they could do about the strep unless he was a carrier (in which she would prescribe amox followed by a course of rampafin?). She said studies are inconclusive about the value of preventative antibiotics...that she felt they do not prevent strep or PANDAS symptoms from recurring. She felt things would get better next year when he is older.

 

You've all given me hope again that there is a logical explanation. It is so upsetting to get your child back, think you understand what was causing it, and then to have it return only to wonder if you'll ever get rid of it again! If he doesn't start to improve today I will at least try to call the 'strep expert' and ask for advice, though it seems pointless.

 

Natterbus

[EAMom]

I would say that prophylactic antibiotics are helpful for most PANDAS kids. I think part of it is a matter of finding an effective antibiotic (pennicillin or amoxicillin doesn't always "cut it").

 

Our dd is doing well on Azith. (the other 3 abs didn't do as much). Some kids do well on Keflex. Our dd still has exacerbations when exposed to strep, or most recently with a virus, but nothing gets full blown/out of control like it did last spring. Her symtpoms are 15% vs 100% . She is on a pretty good dose, 250mg Azith daily (she's 54 pounds).

 

IMO often when abs don't work it's a matter of not having a high enough dose or not being on an effective antibiotic.

 

Here's something on Amoxcillin failure in Strep throat http://www.latitudes.org/forums/index.php?...in+strep+throat

 

One problem with penicillin is that if you miss a dose, you are essentially unprotected for several days, I don't know if this is the same for amoxicillin.

 

We think Azithromycin helped our dd b/c it can get at intracellular strep and is immune modulating. There are some people on this forum that have had good luck with Keflex (which didn't work for us). But, I would say that one of those, would be a good choice for prophylactic antibiotics. Dr. Kovacevic likes Augmentin, so that is another possibility.

 

There have been 2 studies by NIMH about PANDAS re abs.

 

1) http://intramural.nimh.nih.gov/pdn/pubs/pub-6.pdf This early study didn't find that pennicillin helped. The major flaw in the study was that the kids weren't actually taking the pennicillin regularly b/c it was a bad tasting liquid formulation. Poor compliance. The other problem, which Swedo mentioned in the DAN! video http://www.latitudes.org/forums/index.php?showtopic=4262 was that it was a crossover study (Swedo explains this better on the video) and there was a lag effect...some of the kids that had exacerbations on Pen were actually having residual exacerbations from the time they weren't on Pen.

 

2) http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf This study found that both pen. and Azith. both helped to prevent exacerbations. The problem with the study is that scientists discount it because it didn't have a "negative control" (ie a group not on any antibiotic). They though Pen would act as the negative control but this time the kids actually took the pen (pill form, not liquid). Since the compliance was good, both antibiotics were effective.

 

Unfortunately, NIMH has taken the "official stance" that prophylactic antibiotics should not be used until further studies have been done. The problem is, nobody is planning on doing these studies any time in the foreseeable future, completely unhelpful if your child has PANDAS today! Somewhat off the record, Swedo did say (I think this was on the same DAN! video, or maybe on the question and answer session afterwards) that prophylactic antibiotics were actually very helpful.

 

Prophylactic antibiotics aren't the full answer...some kids get bad enough (esp. with repeat PANDAS episodes) that antibiotics aren't enough (and then you should also consider IVIG). Also, (as BMOM recently posted) occasionally you can get strep on prophylactic abs (maybe a dosing issue, needs a higher dose). Also, your child will still respond when exposed to strep/other viruses...but for us Azithromycin has really helped things from getting full blown.

 

It is interesting that this strep expert felt that things would be better next year when your son is older...unfortunately, studies showing how these kids do long term (esp. if they don't get IVIG or aren't on prophylactic abs) are completely lacking. There are plenty of PANDAS kids above the age of 9 that have plenty of problems! If anything, I would hope that PANDAS symptoms might resolve with puberty (or after), but that is something that I have not seen literature on, and I don't know if there is a difference with boys vs. girls.

 

You may also find this link on antibiotics, IVIG, etc. very informative: http://www.latitudes.org/forums/index.php?showtopic=3911 .

 

Good luck and let us know how your son does.

[natterbus]

The Dr. felt he would do better next year only bc as his immune system strengthened and hygiene improved he should catch strep less frequently. She said most of the kids who come to see her with recurrent strep are 7-8 yr old boys. Natterbus

[EAMom]

Unfortunately, according to Kurlan's June 2008 study (which did have some flaws), kids with PANDAS get strep more easily than regular kids.

[natterbus]

I suspect that is true in our case or we wouldn't have had 4 cases in 7 months. Plus I have 2 younger boys that could bring it into the house in the coming years as well. I don't agree with her necessarily - that was just her unhelpful solution. I wanted to clarify why she claimed that strep would drop in future years.

 

natterbus

[natterbus]

Just thought I'd update the saga in case anyone has insight...2 weeks after prednisone and return of PANDAS symptoms, ds is diagnosed with a whopping double ear infection. He goes on amoxacillin. 4 days later it is not working and we switch to augmentin (isn't aumentin good for resistant strep too?). 4 days afer finishing augmentin he has a horrible headache and vomits. Strep test is negative. Mild sore throat and headache persist until on the 8th day he vomits again (that would be tonight and why I am up so late bc I can't sleep stressing about my poor little guy). We will be returning to the doc in the morning but I don't even know what to do.

 

If the strep is negative again they'll just ignore me, but what else causes headache, sorethroat and vomitting over an 8 day period? Not to mention his behavior is the worst it's been in 7 months since we got the 1st in a run of strep diagnoses. At least I have an excuse to ask for Zith this time...there's nothing left if he essentially contracted strep within 24 hrs of finishing augmentin (or had it while on augmentin and it didn't work).

 

Natterbus