Steroid Question

[kc35]

On the webpage of Dr. K (big PANDAS Dr in Illinois) - under the section "Updated Pandas signs and Symptoms" point number 7 reads "Measurable improvement following steroid burst" in red. I am confused about whether the child needs to be on abx while having the steroid burst or not. My DD has not been diagnosed with anything yet. She has no obvious active infection and is no longer on abx. Her OCD symptoms really ramped up one week after the abx were finished. Bloodtests are being run to test for infections. My understanding was that the steroid burst was to determine whether it was an autoimmune response. However from what some people on here are saying is that if there is an infection (which is what I thought PANS was anyway) then the steroid burst will make it worse. My DD is not on any abx since she has no signs of an infection. For those of you who have done the steroid burst, does it have to be done while on abx or not?

[msimon3]

Done with antibiotics. The steroids are immunosuppressive, so you take antibiotics while on steroids to prevent infection or worsening of an active infection.

[kc35]

The PANS doctor wants to do steroids without abx which doesn't sound like the standard PANS protocol for possible diagnosis. So I don't feel comfortable giving her steroids only if no one else here was told to do that. The Dr told me that he won't prescribe abx at this point. Meanwhile her symptoms are getting worse - she can't walk without hopping, stopping etc. She is so upset by it. She came out of school crying because of it today. It is becoming very noticeable. My only option seems to be a phone consult with Dr T on Tuesday to see what he thinks. Advice on what to do?

[T_Anna]

I would definitely call Dr.T. He knows this stuff. I think you need to do the blood tests, but most importantly is to get your daughter on antibiotics. He is very busy and that creates most if his negative feedback (and also why you can get a phone consult quickly), because he doesn't have long waiting lists.

 

My advice, have a phone consult. Make sure that you get 30 days antibiotics or call his office early (I have the pharmacy call) to get refills (don't wait until day 10). Don't be afraid to ask for what abx you want or think works well with your daughter. You can even ask about antivirals at the same time, many kids are on both.

 

I know that Dr.T gets a bad rep because he doesn't email back reliably, and you can only pin him done with an appointment for follow ups, etc. We have dealt with quite a few doctors at this point (10?) and we keep going back to Dr.T for his knowledge and so far (knock on wood) we have always been moving in the right direction (albeit very very very slowly).

 

Just my .02,

T.Anna