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I might be the lone voice, but my son did amazingly well on a low dose zoloft before we got the PANDAS dx. The Pedi Neuro put him on it for the dramatic OCD he was experiencing. It helped him through the really tough days after the sudden onset, to keep things calm until we got in to the Immunologist. This is just a suggestion, though more natural supplements suggested here sound really good and we may have tried them if we had known about them back then.

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Then he is geting the upper end of the dose. It is 7.5-15mg/kg/twice per day and at 40# he is getting about 14mg/kg/2x a day. I just wanted to make sure he was getting the highest dose. Withj that said, cefprozil is a cephalosporin and can be given at the same time as a penicillin (augmentin) or zithromax(would be best IMO). Does your ENT have any knowledge of PANDAS and maybe you could persuade them to add in zithromax, even if just for 7-10 days?

 

Colleen

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So is Cefprozil in the Omincef family??? My dd improved only slightly on Omnicef. It wasn't until we started Zithromax that she truly started to improve. Different abx work differently, so maybe trying one that goes intracellularly would help.

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If you have insurance go see a psychatrist. I was against psych meds at first too. But after 14 months, they are what has helped the most and insurance covers alot of it.

You may want to see a few psych docs at the same time to compare their ideas. The first psych doc we saw was terrible. The next two were much better. The bad one set us back about 8 months.

The psych meds can and do provide relief but it takes awhile of trial and trial and trial.

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I don't know why it has to be so hard. But don't doubt yourself. You are in an impossibly difficult situation, trying to make decisions for you child no one should have to make. The previous poster was right, there are some circumstances where psych meds become necessary and it doesn't need to be forever. It can make a huge difference short term till you get through this crisis. And you will get through this! With my first PANDAS child we did use SSRI's and they worked very well for several years till we got him stabilized with daily antibiotics, then we were able to wean them off. Probably would have been able to wean sooner had we found a good PANDAS doctor sooner, but this was 6 years ago and there were very few around then.

 

If you feel you are in a situation that something as to be done, it is ok to use that as an option. It is not an indication of failure in any form. You are a strong, wonderful parent trying to find an answer for child. Keep us updated...

 

Dedee

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