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Pandas Update


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I decided to give my son azithromycin & the Dr suggested a short course of prednisone. A very nice lady Diana contacted me after seeing my posts and told me her son recovered with azithromycin. I have seen others have success with it to. We are only on day 2 so no change yet. My son had IVIG June 8th and no improvement..Dr said he will do another IVIG 2nd week of July if needed...sigh..I just want to get rid of this PANDAS! My sons OCD is horrible and he is really spacey..I appreciate everyones help. Sarah

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The lady whose son recovered from PANDAS sent me an email out lining his dosage..He started with 250mg for 10 days/then 250 mg for 6 weeks/then after 6 weeks went to 125 mg per day and they have taken that for 4 months. she said it took about 6 months to get him back to himself..Sarah

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I can't really give much input regarding the azith, as my son takes amoxicillin. Although I have heard of several on this board who have gotten good results with azith. What I wanted to say was that I know you are frustrated with the slow progress but you should try to reassure yourself that you are truly blessed that you have found a doctor who is willing to help you. For most of us that is the biggest battle. Please keep us updated on your sons progress. Good luck with his therapy.

 

Dedee

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HI, Thanks for checking in..He is doing a tiny bit better..

I started chelation on my own..using Cutlers protocal and the improvement may be from that..My theory is he has PANDAS because he is full of metals which caused his immune system to fall apart.So I did one round and will do another next week for 3 days..

Also we added LDN, inositol and he was low in lithium so I added that..

He is supposed to get another IVIG July 10 and I am hoping we can get him back!

I saw a lot less hand & vocal tics today..

My Dr is keeping azith until in her back pocket until Aug if nothing is better by then!

Basically I am worried my son will loose his school placement if he doesn't get better!

Thanks, Sarah

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