Steroid Blast

[yogamom58]

Hi everyone, new to the board, quite convinced my 13 year old son has PANDAs - and I need to get some information about experiences others have had from doing the steroid blast regimen to see whether or not there is an improvement in symptoms/regression to validate PANDAs. What dosage of steroids was your child given, duration/experience? I know that steroidal medicines can be very tricky, so I know that the dosage is critical. Trying to find a pediatrician who is conversant about PANDAs, let alone getting them to prescribe a steroidal blast for validation will be problematic. Before we go the IVIG route, we'd like to try the steroidal blast regemin. Anyone willing to share their experience. My son has met all criteria for PANDAs, and suffers from OCD and ADHD. I am exhausted and want to know that we are checking all routes for helping him. Thank you in advance.

[peglem]

We've only ever done the 5 day steroid burst, 60mg/day for a 100lb girl. A positive response to steroid burst is not specific to PANDAS, but it is an indicator that the problem may be autoimmune, if suppressing the immune system brings about improvement in symptoms.

I know others here have done longer bursts, which need to be tapered off slowly.

I could be wrong, but I believe the dosage of the steroids is fairly standard, and based on weight. I mean there is not a special "PANDAS sized" dose. I think most physicians would know how much to prescribe for your child.

[Kiera]

Pandasnetwork.org says at least 1mg/kg/day of prednisone x 5 days, it's just a temporary relief of symptoms. I gave my ds8 (20kg) 30mg a day x 5 days and saw a huge improvement by day 4! Thereafter he started antibiotics and he has remained about 80% improved since (we did this early August). I had the script for the prednisone for a couple of months from his pediatrician to help with a nagging cough from a chest infection but I was reluctant to give it at that time thinking of the side effect of altered mood making his already bad mood worse, however I later realized the cough was a tic, and figured he had Pandas so went ahead and gave it, TG. If you live near a large city, check with the various Panda networks online, they can help you find a Pandas Dr in your area and just start there. That's what I did, good luck.

[EAMom]

Is your child currently on full-strength antibiotics? What type and dose?

 

I personally wouldn't do the burst until he's been on good antibiotics (Azith. or Augmentin, not just amoxicillin) for at least a couple of months.

 

You would definitely want to do the antibiotics b-4 (and after) IVIG anyway.

 

Also, if lyme is even a remote possibility, it is recommended that you test for that b-4 steroids (lyme and steroids are not a good mix).

 

My theory, is that if there is a current infection (strep etc., even low grade, hiding out intracellular or in sinuses) and if you use pred (esp. without antibiotics) too early in the game, the steroids might "seed" the infection, making it harder to treat. (This happens with herpes and lyme, so I'm guessing it might happen to strep, but that's just my paranoid theory.)

 

We personally, didn't do a burst until our dd had been on abs for over 1 year (okay, so we're a bit of an extreme example.)

 

Have you read the FAQ thread? Lots of info: http://www.latitudes.org/forums/index.php?showtopic=6266 good info.

Edited September 30, 2010 by EAMom

[T_Mom]

Yogamom58--You have gotten some good suggestions here. You might also want to read the "helpful threads" located at the top of the PANDAS forum page. There you will find a host of info. including information on steroid bursts.

 

Steroid bursts were very helpful in my d's case. If you are not near a PANDAS doctor you might want to contact Dr K for a phone consult www.webpediatrics.com (in the Chicago area) and see if he would work with a local neurologist (they are often comfortable with steroid use) in your area.

 

I will add, at first I was very afraid of the steroid use for our d. A local neurologist (who never mentioned Pandas) said to me, that he would do steroids though it was off-label and "people would not understand why" -- It worked wonders.