Steriod Burst

[nicm930]

My dd started a steriod burst with the recommended dose from Dr K. She is on her 4 th day and were are not seeing dramatic results. Anyone that has done the steriod burst, how long was it until you saw results. She is having trouble sleeping, which is pretty new. The rages are better. OCD a little better. Maybe I am expecting too much but I thought we would see he back to normal.

[amy s]

My dd started a steriod burst with the recommended dose from Dr K. She is on her 4 th day and were are not seeing dramatic results. Anyone that has done the steriod burst, how long was it until you saw results. She is having trouble sleeping, which is pretty new. The rages are better. OCD a little better. Maybe I am expecting too much but I thought we would see he back to normal.

 

 

We did not see completely back to normal results with our dd but a definate huge improvement up and above anything we had seen in a very long time. We saw results beginning on day two but I am not sure that is very common.

[Indigo]

I believe we saw results on day two and dd was really "normal", meaning she slept great, was sweet as pie, was quiet, no hyperactivity, no sensory issues, no raging. It might depend on the dose, too, perhaps.

[michele]

Did you use Dr K or did another Dr. do the burst using his protocol. Our ped said no this is out of the standards of the pediatric association which she follows. She wouldn't even try the azith. I copied Buster's entire post for her. She questioned using an internet site. I guess I could try the immunologist again. Last time he would only do pen vk saying that is what is recommended from NIH. I sent him the other azith study articles but he said no. Anyone here see D. Gilbert? I wonder what he uses in Cincinnati he has a lab that they used for some of the studies. Dr. K told me to observe between day 3 and 10 for significant changes on the burst. Good luck. My fingers are crossed for you.

 

Michele

My dd started a steriod burst with the recommended dose from Dr K. She is on her 4 th day and were are not seeing dramatic results. Anyone that has done the steriod burst, how long was it until you saw results. She is having trouble sleeping, which is pretty new. The rages are better. OCD a little better. Maybe I am expecting too much but I thought we would see he back to normal.

 

 

We did not see completely back to normal results with our dd but a definate huge improvement up and above anything we had seen in a very long time. We saw results beginning on day two but I am not sure that is very common.

using

[Worried_Dad]

When we did this with our son (12), he was in the midst of the worst, most nightmarish explosion of PANDAS symptoms we've ever seen. Things were horrible! By the 2nd day of prednisone, we saw a huge improvement. Unfortunately, we only had 3-4 more days of relief before things went gradually downhill again.

 

Confusing the issue, at that point our local psychiatrist had put him on two psych meds (ativan and zyprexa) that we later learned from Dr. K were known to put many PANDAS kids "over the edge." When we tapered off the psych meds, things improved dramatically again. So we believe that the steroid burst improvement would have lasted longer if we hadn't been on the psych meds... but guess we'll never know for sure.

 

Good luck!

[nicm930]

I had Dr K e-mail me with notes from our phone consult and brought them to my pedi. He agreed with it and said the dose was fine, especially that it was for a short time. We also saw Dr Trifeletti on Wednesday and agreed with Dr K's protocol. He did prescribe Zithromax for her too. It just worries me that she is having trouble sleeping now. I am going to e-mail Dr K and see what he has to say.

[EAMom]

Michele...if your pediatrician has issues with you using the internet as a source of up to date PANDAS information, I would suggest you give her Dr. James Leckman's (child psychiatrist) phone number at Yale University. She should also be contacting Dr. K herself if she has questions about his recommendations re. steroid burst. I find her dismissive attitude towards you very unprofessional.

 

I find do find it interesting that she questions your use of the internet...but doesn't seem to be doing any research herself.

 

I've just about had it up to here with misinformed closed minded ignorant pediatricians who think "they know all about PANDAS." ...but all they do, at the most, is look at is the out of date NIMH website (which actually doesn't recommend use of prophylactic antibiotics at all for PANDAS).

[EAMom]

Hi Nicole,

Is you dd on psych. drugs? That could mess things up. I know that did for Worried Dad...

We had that experience as well (not during steroid burst, haven't done that)...hard to sort out what was PANDAS and what was a side effect from psych. drugs...

[Buster]

Michele,

 

First, I'm sorry that my post was not helpful to your doctor. I have to admit that I too would be skeptical of material off an internet site without doing my own research and cross checking sources. It is very unfortunate that your doctor seems unwilling to see if the material has validity and worse that your doctor seems not to do his/her own research.

 

With some, you might be more effective by getting the underlying papers on PANDAS rather than giving them the summary material (i.e., hand them Madeline Cunningham's paper, Kirvan's paper, Swedo's landmark paper, Kaplan's strep papers, ... we could create for you an extremely good bibliography of the papers we rely on).

 

This is called the "thump" effect. It's the walk in with "here's my papers on this disease, can you tell me what data you are relying on?"

 

Now it is possible that your doctor has read Kurlan's or Singer's papers that came out in Pediatrics June 2008. These papers which use the same underlying data set have, by some, been said to be proof that PANDAS doesn't exist. They absolutely, positively do not say that. But they did show that a group of kids with long term TS, who were likely post-pubescent at time of study (e.g., 13-16), did not have a correlation with strep infections when using a particular definition of a strep infection and a particular measurement criteria. The studies say nothing about onset and nothing about treatment or effectiveness. There are many, many flaws in the studies, but frankly, I think the Kurlan study (that Singer uses his data from) has done more damage to PANDAS kids and their parents than provided any benefit.

 

If your doctor brings up either study, you might need rebuttal arguments -- please see my post at:Kurlan and Singer's Papers

 

At the end of the day, you might find it easier to just get another doctor who will at least look at the literature.

 

As concerned parents, we scour research journals spending endless hours trying to correlate reports on a disease that has been only recognized in the last decade. We too worry about "do no harm" and are constantly trading off the diagnostic benefit versus the harm of every test. I have no good answer to you except to find a doctor who will also spend time researching what's wrong with your child and you can trust with the treatment of your child.

 

Best wishes and thoughts,

 

Buster

 

 

Did you use Dr K or did another Dr. do the burst using his protocol. Our ped said no this is out of the standards of the pediatric association which she follows. She wouldn't even try the azith. I copied Buster's entire post for her. She questioned using an internet site. I guess I could try the immunologist again. Last time he would only do pen vk saying that is what is recommended from NIH. I sent him the other azith study articles but he said no. Anyone here see D. Gilbert? I wonder what he uses in Cincinnati he has a lab that they used for some of the studies. Dr. K told me to observe between day 3 and 10 for significant changes on the burst. Good luck. My fingers are crossed for you.

 

Michele

My dd started a steriod burst with the recommended dose from Dr K. She is on her 4 th day and were are not seeing dramatic results. Anyone that has done the steriod burst, how long was it until you saw results. She is having trouble sleeping, which is pretty new. The rages are better. OCD a little better. Maybe I am expecting too much but I thought we would see he back to normal.

 

 

We did not see completely back to normal results with our dd but a definate huge improvement up and above anything we had seen in a very long time. We saw results beginning on day two but I am not sure that is very common.

using

[Indigo]

Michelle-we use a doctor in PA who talks to Dr. K about how he handles things.

[michele]

What part of Pennsylvania are you in? Do you want to Private mail me the name? I saw three Dr's last week and none of them seem to be following the antibiotics protocal for PANDAs but they say they do know PANDAS and treat it. I am sure with anti psychotic meds.

What type of Dr. are you using? Sadly I may have to find a new ped. She does not seem too interested in stepping out of the "typical pediatrics issues" I have no idea where else to go though.

 

Michele

Michelle-we use a doctor in PA who talks to Dr. K about how he handles things.

[nicm930]

Hi Nicole,

Is you dd on psych. drugs? That could mess things up. I know that did for Worried Dad...

We had that experience as well (not during steroid burst, haven't done that)...hard to sort out what was PANDAS and what was a side effect from psych. drugs...

[

 

 

Yes, she was on psych meds but has been weaned off before the steriod burst. I e-mailed Dr K and he said to continue to observe her for 1 more week.

[amy s]

Good luck!!! Hopefully you will see clear results soon.