Help me make a decision about Prednisone

[thomasmom]

Hello Many thanks to all the kind people who contribute to this forum. I appreciate your being an emotional support as well as teaching me about this incredible disorder we call PANDAS.

 

I need to make a decision. My ds9 lately has been really ramping up the tics. I thought it could be 1) stress from the first day of school 2) allergies especially since there is a lot of construction at school, dust, etc 3) a mild virus that may have come through our house or 4) the perfect storm of all of the above

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Dr. K is in Europe and not available so I upped Thomas abx to 500 mg 2 x a day instead of just once. continued on with his allergy meds. I don't think he has ever really gotten over the episode of Bad PANDAS symptoms that he experienced early this summer as a result of 2 teeth coming out. Today he seems a little better Tics are still almost constant but the vocals are not as loud

 

so.....should I convince my local PEDS (who is a very kind woman but just not any experience with PANDAS) to write for some steroids to just calm things down a bit ? Thomas had an excellent response to the first steriod burst (2 years ago) -no tics for 5 weeks. Last summer he got another burst which also worked almost immediately. However this time the tics came back the day after the last dose. I have always dreamed about getting a longer steroid dose like those from Dr. Latimer

 

Any thoughts ? Should I just wait and see if he gets better (a little hard to do in school) or ask for the steroids ?

[momaine]

Hello Many thanks to all the kind people who contribute to this forum. I appreciate your being an emotional support as well as teaching me about this incredible disorder we call PANDAS.

 

I need to make a decision. My ds9 lately has been really ramping up the tics. I thought it could be 1) stress from the first day of school 2) allergies especially since there is a lot of construction at school, dust, etc 3) a mild virus that may have come through our house or 4) the perfect storm of all of the above

l

Dr. K is in Europe and not available so I upped Thomas abx to 500 mg 2 x a day instead of just once. continued on with his allergy meds. I don't think he has ever really gotten over the episode of Bad PANDAS symptoms that he experienced early this summer as a result of 2 teeth coming out. Today he seems a little better Tics are still almost constant but the vocals are not as loud

 

so.....should I convince my local PEDS (who is a very kind woman but just not any experience with PANDAS) to write for some steroids to just calm things down a bit ? Thomas had an excellent response to the first steriod burst (2 years ago) -no tics for 5 weeks. Last summer he got another burst which also worked almost immediately. However this time the tics came back the day after the last dose. I have always dreamed about getting a longer steroid dose like those from Dr. Latimer

 

Any thoughts ? Should I just wait and see if he gets better (a little hard to do in school) or ask for the steroids ?

If they gave him relief, why not try it again and see where it gets you? Is your long term plan for IVIG? Has he had it already?

[thomasmom]

Hello Many thanks to all the kind people who contribute to this forum. I appreciate your being an emotional support as well as teaching me about this incredible disorder we call PANDAS.

 

I need to make a decision. My ds9 lately has been really ramping up the tics. I thought it could be 1) stress from the first day of school 2) allergies especially since there is a lot of construction at school, dust, etc 3) a mild virus that may have come through our house or 4) the perfect storm of all of the above

l

Dr. K is in Europe and not available so I upped Thomas abx to 500 mg 2 x a day instead of just once. continued on with his allergy meds. I don't think he has ever really gotten over the episode of Bad PANDAS symptoms that he experienced early this summer as a result of 2 teeth coming out. Today he seems a little better Tics are still almost constant but the vocals are not as loud

 

so.....should I convince my local PEDS (who is a very kind woman but just not any experience with PANDAS) to write for some steroids to just calm things down a bit ? Thomas had an excellent response to the first steriod burst (2 years ago) -no tics for 5 weeks. Last summer he got another burst which also worked almost immediately. However this time the tics came back the day after the last dose. I have always dreamed about getting a longer steroid dose like those from Dr. Latimer

 

Any thoughts ? Should I just wait and see if he gets better (a little hard to do in school) or ask for the steroids ?

If they gave him relief, why not try it again and see where it gets you? Is your long term plan for IVIG? Has he had it already?

 

 

yes he has had it twice each year March 2009 and Jan 2010 both with a horrible 3-4 week "turning back the pages" period immediately after but then good couple month relief after that. I do worry that BCBS of NC will give us a hard time. They have paid twice. Both times we just took a gamble and had Dr. K's office and Oakbrook Surgical submit the claim. Ideally I think Thomas needs IVIG every 6 months but I try to squeak out as much as we can from other options so we don't have to get in a fight with them.....yet

[Fixit]

JMHO...bursts are a waste...and if going to do pred, do taper to see if you can get lasting results.....but....make sure on abx long enough prior to start...make sure no gut issues...yeast took off on us with that and vocals came in....you may need diflucan with....and probiotics, probiotics, probiotics....

 

on another theard ...brain damage one...young lady with pandas talks about pulsing with pred..like they would treat lupus or ms....

[thomasmom]

Thanks for the info !!