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Should OCD remit completely?


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The immunologist didn't rec. the steroid burst since he didn't feel it would necessarily predict dd's response to IVIG. Perhaps her felt that there was already enough evidence that she had PANDAS? He did think it was interesting that dd's handwriting improved on Advil. Of course dd's handwriting is again terrible (still on advil, but I had a strep infection all last week).

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I have not found the antibiotics to take away the repititive things/Asperger-ish behavior/anxiety. It did clear up the separation anxiety completely. The steroid burst did--dd was a completely typical child for two weeks on the steroid burst. This has been extremely bittersweet!! We know it's most definitely PANDAS and that keeps us going with this but at the same time it's so hard to see what could be our life!!

 

Right now we are on week two of Naltrexone for the PANDAS. Sleep is improved on this. She is also slightly calmer/more aware. Advil also helps a lot and I give her Advil before any social situation.

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  • 2 weeks later...

I would just like to add an update, as doing research on this forum and reading all the stories has been such a help to me.

 

My dd's main issue were OCD and anxiety. We are keeping our fingers crossed, but she has finally improved tremendously. She was on 14 days of cefadroxil, 20 days of amoxicillin, and then 20 days of zithromax. I feel it was the zithromax that did it, but it didn't happen instantly.

 

She is left with some urinary issues (feels like there is a drip, a lot of extra wiping). This was her first symptom. I am wondering if sometimes symptoms go away in the reverse of their appearance- due to the brain inflammation subsiding. She has a bad cold this week, and it hasn't stopped her progress.

 

We will keep her on prophylactic zithromax for now, and are having her tonsils out in June.

 

When/if she has another episode, we will go directly to a month of full strength zithromax, along with (most likely) a steroid burst, and hopefully/possibly IVIG.

 

Thank you to everyone for your advice, and sharing your stories. This forum is so important.

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How did you get your Dr. to try the Zithromax? We are still stuck on the Omnicef after 1 year. I just wonder if we had a trial of Zith if it would help. Dr's in OH seem very anti to trying zith. Any suggestions of how to get them on board?

 

Michele

I would just like to add an update, as doing research on this forum and reading all the stories has been such a help to me.

 

My dd's main issue were OCD and anxiety. We are keeping our fingers crossed, but she has finally improved tremendously. She was on 14 days of cefadroxil, 20 days of amoxicillin, and then 20 days of zithromax. I feel it was the zithromax that did it, but it didn't happen instantly.

 

She is left with some urinary issues (feels like there is a drip, a lot of extra wiping). This was her first symptom. I am wondering if sometimes symptoms go away in the reverse of their appearance- due to the brain inflammation subsiding. She has a bad cold this week, and it hasn't stopped her progress.

 

We will keep her on prophylactic zithromax for now, and are having her tonsils out in June.

 

When/if she has another episode, we will go directly to a month of full strength zithromax, along with (most likely) a steroid burst, and hopefully/possibly IVIG.

 

Thank you to everyone for your advice, and sharing your stories. This forum is so important.

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How did you get your Dr. to try the Zithromax? We are still stuck on the Omnicef after 1 year. I just wonder if we had a trial of Zith if it would help. Dr's in OH seem very anti to trying zith. Any suggestions of how to get them on board?

 

Threaten to buy it online (just kidding, sorry--) I could not get anyone to give it to us initially either.

If I had to do it over again, I would suggest we try it for one 10 day trial, to see the effect, and if positive than make the case for one month. Take posts (Buster's) in with articles on use of antibiotics, etc.

Someone also posted once re: trying a walk-in clinic.

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