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How did your children respond when first put on abx and prednisone?


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In our situation the strep had gone undiagnosed and turned to rheumatic fever. The first use of abx, zithromax, and it took close to 3 months to get back to 100%. However, the road between then and now has been bumpy and we are no where near that 100%. My son only shows tics. He has only been on maintenance dose for the past year so now I think that wasn't enough. I have upped the dose. Kathy

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We saw a good response on antibiotics twice. Within a week we could see improvement.

 

We also had great response to prednisone twice. The first time, we saw a slow continual progress (about 75% improved) for almost a month, and then at the very end, she suddenly went from 75% to about 98% - it seemed pretty miraculous.

 

The second time she was not as severe, and we saw complete remission of symptoms by the end of the second week on prednisone.

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I'm not a doctor, but Predisoine is supposed to temporarily knock out PANDAS in all kids. So, you basically know if it's an autoimmune deal. Cant continue it due to side effects. My 12 year old responded well and was pronounced "cured" by Dr. L after both two months later.

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We were a slow but steady story. We haven't done steroids at this point, just abx. The immediate improvement was promising - within 10 days on azith the major violence was gone. He wasn't hitting, kicking, biting any more. The tantrums and rages were still there, throwing things, crying, screaming, flailing on the ground, etc... but he wasn't trying to hurt anyone anymore.

 

After 2 weeks, the tantrums went from being days long affairs (ending only when he raged himself to sleep) to lasting only 2-3 hours (I know, it doesn't sound like an improvement, but when you went from months of just praying for him to fall asleep so no one gets hurt to actually being able to SEE the end of an event - it was pretty momentous).

 

After that initial improvement, however, it has been a slow climb. After 3 months on full strength azith we were at about 50%. Mostly OCD remaining, and most tantrums/rages related to OCD issues. At taht point we went to half dose - where we continued to slowly improve to about 75-80% after another 5 months. (One tic and mostly OCD remaining)

 

He caught strep 2x on the low dose azith - both instances we saw an instant uptick in all symptoms (violence came first of course) but with full dose abx, came back to close to where he was prior to infection within a week or two.

 

Because of the multiple infection, we switched to Omnicef - he only got to about 85% there, and his progress was different than on the azith - and we stalled. We've been there for 2.5 months on the azith, and just came off for a trial break for about 2 months. He's backslid without the abx - but not as severely as we expected - back down to maybe 70-75% on average. His biggest issue is not sleeping once he came of the abx - he didn't sleep for close to 3 weeks. But we started him on melatonin, and he's had 3 full nights sleep in a row now, so we're hoping that not being completely exhausted (a trigger for ANY kid - let alone a PANDAS one) will help us out a bit.

 

Hope our story helps - we're not cured yet, but we've continued to make steady progress in the right direction that we havne't had to question going for any of the "big guns" just yet.

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Thanks! Sometimes I just need to hear from other parents and thier experiences. My dd started abx and pred dec 8th. Tookk about 10 days before we notice improvement. But, the improvement was hugh. For about 15 days. Then on New Years day, the eyes were extreemly dialated, anxious and she started backsliding.

But then Tuesday, she had color in her eyes again and was moving forward again. I don't know, is that what the call sawtooth recovery? She will be done with abx on Thursday and she won't see Dr. B till Monday.

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