Steroid Success Stories

[michelew]

Hi, Everyone. I took my son to his neurologist today. She said she would be open to trying steroids as a possible treatment option, but she said she would be interested to know what has been tried and successful with PANDAS kids in the past.

 

I know a few of you responded to a recent post of mine, but I was wondering if you could please elaborate on exactly what your doctor's dosing was, the name of the steroid, the duration (one time or did it require several treatments), and whether or not you did a burst, taper or IV. Also, if you could please share your doctors' names, and the type of doctor (ie: neurologist, immunologist, etc.), I would greatly appreciate it.

 

My son's doctor is just very interested in knowing what exactly has worked for others with the same condition. I feel fortunate that she is willing to try just about anything I ask, but unfortunately she has never treated a PANDAS kid, so we both feel as though we're treading unknown waters (so to speak).

 

Also, could you please share any adverse side effects you experienced, before you saw improvement. I just want to know what we're getting ourselves into.

 

Thanks! ;-0)

 

Michele

[dcmom]

will pm you!

[Kiera]

PM'd you.

[eljomom]

sure wish we could get everyone to give details on this one!!

[TwoSocks]

I would love to see these replies as well and will share my limited experience here.

 

DS6 is on his second round of PANDAS (or continued for 2 years, but recent huge tic outbreak - more symptoms as well but this is the most obvious). The first time we discovered he had PANDAS, antibiotics turned his life around in two days. This time, he has been on antibiotics for a few months and still had the overnight explosion in tics.

 

He weighs 65 lbs and was given prenisone, 20 MG 2X daily for 5 days. We gave him his first pill on a Monday night, within 36 hours all of his tics were gone. Totally gone. We are now 16 days post steroids and seeing things creep back in slowly.

 

I have a much longer story, currently unfolding, but you asked about steroids that has been our experience so far. I know they can't be used long term, which is sad because this was like magic. Sigh.

 

I will get a more detailed post together soon so I can share our experience (and knowledge?) with others.

[T_Mom]

I might suggest asking your doctor to call Dr. L as she uses steroids, in certain cases, to treat PANS -- this type of support could really help your doctor!