Ladymavs

We have seen Dr Rao since our onset back in late 2013. He is very knowledgeable on PANS/PANDAS and spends a great deal of time with patients. This being said, you often have to wait a long time to be seen in the patient room. However, as long as he is spending time with us and being thorough (which he does), I dont' have an issue. Just be prepared to wait or plan to get an early appt in the morning. The staff is helpful, especially Lori, and we have been pleased so far.

Has anyone had experience with minocycline for myco p? When our journey began and we started the abx routine, my ds 14 was on azith. We saw results pretty quick and saw the OCD stuff ramp down significantly. We stayed on azith for couple of months and just kept on hand for flare ups (which we did have a couple of big ones). For the last few months, we have been stuck on scrupulosity ocd and we just started a new abx, biaxin, to try and bring down this flare. After one month..it has not done too much. I don't know if we could go back to azith since we had been off it for awhile or if we should request mino. Any feedback appreciated.

This is on my list to ask doctor about for ds when we go back next week.

Azith originally was prescribed in our PANS journey back in 2013. WE stayed on it for several months and we actually saw good results in bringing down the OCD/intrusive thoughts almost immediately. Our issue turned out to be high myco p and it did bring it down 800 points in the first 5 months and we continued on for a few more months before going off. When we have had blips, we do to azith 500mg for 3-5 days and it seems to help. Last week, we did the same as we started to see a flare up of the intrusive thoughts, but it seems to be making worse. I don't know if it is herx, but we asked for a new antibiotic to see if it could go in an wipe out the rest of this myco p any more effectively. We are starting on biaxin this weekend. Anyone have any experience with this? Also, doing nasal spray, NAC, turmeric and vit c to help with inflammation.

Our son, age 13 now, came on with sudden onset of intrusive thoughts OCD last fall. It was extremely sudden and over the next several days, he was spending more and more time confessing all of these crazy thoughts that were totally out of character. Our pediatrician tested for titers at our request and they came back normal. In researching PANS/PANDAS online, we found the name of an immunologist who tested for myco, lyme, CBC, and specific vitamin levels (specifically D). Our son had extremely high myco P (igg) and very low vitamin D. He put him on Azith and vitamin D supplement. After just 2-3 days on antibiotic, the thoughts subsided to a very nominal level. He has continued to do well with a few minor hiccups that were manageable until the last couple of weeks.
 
Around the first of July , he all of a sudden had a huge flair and the intrusive thoughts have become almost debilitating on some days. The thoughts range from a sexual nature to violence to thinking he did or said something offensive. Again, things that are totally not in his nature. He is constantly confessing. We are preparing to move to a city about 45 minutes away to be closer to husband's work, so maybe this is a trigger. He is also 13 and in the stage where hormones are going wild...so this may play a part in the flare.
 
The immunologist had upped the abx strength and we have started on probiotic. The myco was recently retested and it is still at 1500 (but down 800 from where we started). I hear it can be tough to knock out myco p. We are doing multivitamin, omega, probiotic, and additional C & D vitamin supplement.
 
After this flare started, we got a script for Prozac. Started at 10mg for one week and doctor instructed to increase to 20mg after first week. I think we increased too fast and may not need 20mg as I hear that kids with PANS/PANDAS often respond to lower doses. I would prefer not to do the Prozac at all but rather use 5-htp or something natural, but am trying to give it a chance to work. We are starting CBT next week.
 
Anyone have similar experience? Any advice or recommendations are definitely appreciated.