steroid burst survey

[michele]

Glad to hear from you. How did you get the steroid burst from Dr. K's phone consult? Which Dr. wrote the script? We did the consult but could not find a local Dr. to write it.

 

I am interested in hearing about people's experiences with steroid bursts. Would anyone whose children have tried them please describe:

 

.....PANDAS symptoms.

.....Duration & dosage of steroid Burst.

.....Other medications or med changes around the time of the steroid burst

.....Describe improvement seen (OCD, rages, etc.) and amount of improvement.

.....Days/weeks after beginning the burst that improvement was seen.

.....How long did the improvement last.

 

(I realize that there are some descriptions of steroid burst experiences on the forum, but it is sometimes hard to distinguish first hand experiences.)

 

Thanks!

 

Hi, my first post on this forum! (I have been surfing around lately and found lots of good info)

 

I just finished my second son's 5 day prednisone burst. I was thinking if I should start a new thread with our story which includes at least 2 of our kids and maybe more, but in the meantime, here is our information relevant to your question. (I copy pasted the info below from elsewhere and then edited it, so sorry if the grammar isn't perfect)

 

My second son's PANDAS symptoms started about 3 years ago, his tics included eye rolls, grimacing with mouth, licking upper lip, lots of yelling and shouting when he got irritated etc He tested positive on the ASO/Dnase tests. He was on Zithromax for about 2 years and stopped taking it in April 09. He was OK for about 2 months, but when he caught a virus, his pandas symptoms came back. There may have been a sibling at home with strep at that time. Since then, his symptoms have been up and down. We retook his ASO/Dnase test on 7/09/09, it came back positive with the antibody count at 170. On 7/25, we started him on a 5 day course of prednisone - 30 mg a day (he weighs about 65 lbs) per our phone consult with Dr Kovacevic. Day 1 he did great with noticeable improvement - he was much more calmer and relaxed than usual, on day 2, apparently the prednisone reduced swelling in his sinus areas, because he came down with numerous sinus symptoms (coughing, sounding nasal etc) and his pandas symptoms got real bad, we skipped day 3, then day 4, 5 and 6 he took 20 mg, and then this Saturday he took the last pill of 10 mg. Once the sinus type symptoms subsided, there was some slight improvement while he was still taking it, but nothing spectacular. His last dose was this past saturday, and since then, he does seem somewhat improved. On day 2 and 3, he was licking a lot his upper lip, and that seems to have stopped. But we still haven't seem him yet as good as the first day he took the prednisone. If I remember to check back here, I'll gladly update the progress.

 

PS I have an appointment scheduled with Dr Latimer at the end of this month. So far, I've heard pretty good feedback about her. If anyone has more to add, I'd like to hear it!

[pandas2boys]

"Glad to hear from you. How did you get the steroid burst from Dr. K's phone consult? Which Dr. wrote the script? We did the consult but could not find a local Dr. to write it."

 

Glad you asked that. I'm willing to bet that every single pandas parent can write an entire book about their experience!

 

Indeed, Dr K explained that he couldn't give us a script as he "can't cross state lines". I tried my local pediatrician, and while he indeed is a top notch pediatrician, he refused to get involved. He said that as long as he doesn't see a peer reviewed article in any standard medical journal supporting a steroid burst, he won't give a script. Luckily for us, we have been in touch with another Doctor who knows a bit more about pandas, and she was willing to give me a script. Gosh, I can write pages and pages of what we've been through so far. We just received the test kit from Dr Cunningham and she mentioned that she would like to get a detailed history, in addition, we have an appointment with Dr Latimer who also wants our history, so maybe once we write it up, I'll post it here.

 

Have you ever gotten the list of pandas Doctors from Diana Pohlman? If you email me pandas2boys@gmail.com , I can forward it to you and hopefully, you'll find a dr in your area who will give you a script.

[Guest asaxon]

Pandas Symptoms for our DD6 started mid/end March or beginning of April—it was not a “sudden onset” in our case:

 

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Thank you!

[Guest asaxon]

My 5 yr old son received predinsone when he was finally considered an extreme case. He wasn't eating ANYTHING for days, talking

 

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Vickie, Thanks for the detailed response.

[EAMom]

Hi Pandas2boys...Did your son re-start the Azith when his symptoms came back (after he had been off it for 2 mo. and then started to have problems again)?

 

My concern about doing steroids without Azith. is ...what if there is a (sinus or throat or?) infection with strep hiding out? Even if a child is on amoxcillin, there is no way to be sure there isn't amoxicillin "resistant" strep (intracellular strep, or coaggregation preventing amoxicillin from working somewhere. Perhaps that's just me being paranoid as I have a PANDAS who only responded to azith (4th ab. we tried) and another dd whose strep infection was cleared with Azith. (but not augmentin).

 

Here's a good article about amoxcillin failure in strep throat http://www.entrepreneur.com/tradejournals/.../169459644.html (posted before).

 

So....if the don't work well, perhaps it is b/c the child still has strep hiding out somewhere???

[thereishope]

I just wanted to make a comment about amoxicillan...

 

When my son got sick the second time, they once again put him on amox. His symptoms were not getting better in the same timeline as the first time. I called the peds office and told them I didn't think the amox was working. Well, after a few docs talking and the infectious disease doc saying he'd wait out the amox longer, The peds office, in order to shut me up, finally offered to change up the meds to Omnicef if I wanted. I took a couple hours to think about it. I asked if I switched if that meant they'd always start w/a stonger antibiotics for all infections now (something I learned w/ my daughter). They said yes. So, I decided to give the amox more time. Well, it did end up clearing up the infection. I would have jumped the gun too soon I think, in my case, I'm worried that he's going to become resistent to stronger ones. He's only 5. He has a long life ahead of him. I didn't want to gamble w/ that happening.

 

So, I think what I'm trying to say is to the new parents out there is to try the weaker antibiotics out there first. They do work for some. A lot of the parents on here who are giving stronger ones, tried the weaker ones first. Each child is different.

[Guest asaxon]

Luckily for us, we have been in touch with another Doctor who knows a bit more about pandas, and she was willing to give me a script.

 

Be sure to discuss the steroid burst with Dr. Cunningham's staff; if you do the blood draw for Dr. Cunningham's test while you are on the steroid burst, I would think it could cause a misleading test result (i.e., false negative).

[pandas2boys]

Hi Pandas2boys...Did your son re-start the Azith when his symptoms came back (after he had been off it for 2 mo. and then started to have problems again)?

 

After he had been on Azith for almost two years, we having been trying to keep him off it. At one point in July after our phone consult with Dr K, we put him back on it for about 2 weeks, and we did see some improvement, but we have stopped it since then

 

My concern about doing steroids without Azith. is ...what if there is a (sinus or throat or?) infection with strep hiding out? Even if a child is on amoxcillin, there is no way to be sure there isn't amoxicillin "resistant" strep (intracellular strep, or coaggregation preventing amoxicillin from working somewhere. Perhaps that's just me being paranoid as I have a PANDAS who only responded to azith (4th ab. we tried) and another dd whose strep infection was cleared with Azith. (but not augmentin).

 

Interesting, because we gave him the steroids without Azith, on the first day we gave him 30 mg prednisone, he did fantastic. But on the second day, he started coughing, feeling week, sounding very nasal etc, we called Dr Latimer who was very nice to us on the phone even though we never met her, and she thought that it sounded like the prednisone reduced his sinus swelling which in turn caused a nasal drip

 

So....if the don't work well, perhaps it is b/c the child still has strep hiding out somewhere???

 

Question is...... where? Is there any strep tests other than the standard throat cultures?

[pandas2boys]

Luckily for us, we have been in touch with another Doctor who knows a bit more about pandas, and she was willing to give me a script.

 

Be sure to discuss the steroid burst with Dr. Cunningham's staff; if you do the blood draw for Dr. Cunningham's test while you are on the steroid burst, I would think it could cause a misleading test result (i.e., false negative).

 

Thanks for that tip, his last dose was this past saturday, and I did mention it to Dr Cunningham. We are scheduled to draw the blood later today.