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Steroid dosing is dependent on weight--and doctor.

 

Important to realize that tapering is essential if used for any length of time.

 

Doctors are using different protocols but the weight of the child and length of time needs to be considered.

Are you "testing", per Dr K (www.webpediatrics.com), as to whether or not Pandas may be causing the problems? or

Are you "treating", per others, to see whether or not steroids may help with inflammation?

 

--with either use, if your child has Pandas, you will hopefully see an improvement--if the paradigm holds. Get a doctor to help you with this--consult with one via phone consultation if needs be--

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Thanks everyone for the replies. We are doing a 5 day burst, primarily to determine whether IVIG would be effective for him. My ds8 has responsed amazingly to antibiotic treatment all along, but has some residual OCD that has not gone away and at times seems to increase a bit. We had gotten two differing opinions on the steroid dose from the docs - one said 40 mg, one said 30mg. dd12 responded beautifully to round 1 of steroids (put her into complete remission for 6 months). On the second round, which was dosed differently, she showed marked improvement, more like 70%, but it was not sustainable after stopping the steroids.

 

dut- can I ask who was the prescribing doctor for the 60mg? dd12's first round of steroids was 60mg for 7 days and then a taper. It was pescribed by a doctor that we no longer see. It worked wonders for her, but several consults later, we were consistently told that 60mg was too high a dose for her - she was about 85 lbs at the time.

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Hi - yes it was the ped we see for PANDAS (not our usual ped but in the same practice) Dr. Cynthia Keller of Redmond Pediatrics, WA. Our dd did really well on the 60mg. Just 5 days. We saw improvement day 1 but all symptoms resolved by day 6. This lasted for 4-5 weeks and then a super low amount of ocd/anxiety crept in at bedtime just as she was about to fall asleep but this week it has gone again (3-4 weeks later). I feel she is out of this epsiode.

 

I would do that dose again in a heartbeat if I saw symptoms return. She was slightly crotchety and cross during the 5 days and got super hungry the week after the burst but other than we had no side effects....

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I am new to this website and didn't go into detail of our situation. I have tds (twin dear sons)17 yrs. They both suffer from what we now believe to be PANDAS. My husband had suspicions for years, but I didn't believe it. Our ped. didn't believe it. Our psychiatrist thought perhaps, but didn't know enough about it.

 

We convinced our ped to put the boys on abx when they would start to exhibit signs of deterioration ususally the mental came before the physical. He was agreeable, but very skeptical.

 

We finally had our first phone consult with Dr. K. He prescribed an 80 mg. burst of Prednisone for 5 days to test if auto-immune would respond. The difference was astounding. A miracle. By day 2, ds was solving the hardest Pre-Calc H problem that noone could solve. He was like superman. Now day 7, he finished the Prednisone two days ago, ds is back to no concentration, anxiety and other symptoms. Wondering if next time we can try the burst with tapering off instead of stopping cold turkey.

 

My boys never have episodes together--thank goodness! It usually comes one right after the other, which I am not so sure that is great either, but easier to deal with one at a time. THey have the episodes about 2 to 3 times a year, which is so weird. These boys are straight A students, at least they were. They have taken alittle dip in their academics because of the mental debilitating nature of their episodes. They can't concentrate.

 

Now we need to determine if these boys are candidates for IVIG. I wish we had this knowledge when they were 14, would have possibly spared them all the heartache through high school.

Does anyone know if IVIG has been successful long term? And with this age group 17yrs.? I can't quite get the answer........

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