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I am listing our mistakes, because maybe this will help someone starting on the crazy PANDAS road. Since we have approached our 1 year anniversary, here's an overview of DS's (15) trek thru PANDAS #%^.

 

MISTAKES:

1. In the beginning (November to January) We only did 10 days abx and antivirals instead of 30 days or more.

2. We tried SSRIs and created more rage as we upped dosage

3. We went to IVIG before being on abx/antivirals consistantly

4. Doses always started conservatively

5. We didn't know that we should ASK for higher & longer doses.

6. We blindly trusted our CBT therapist who had no business involving herself in our medical treatment.

 

Here is out history:

Spring of 2012 - We notice OCD and choreoform movement. Goes to psychologist.

Summer 2012 - Frequency urinating & sudden bed wetting.

September-October 2012 - No longer functioning with OCD trouble attending school, after FLU vaccine.

November 2012 - We start CBT 3x a week, it helps, but now bathroom becomes hours (4-19 hours).

December 2012 - He is dx with PANDAS/PANS: Strep, MycoPlasma, EBV and Coxsackie. StartAugmentin, then add Valtrex and Biaxin (only 10 day doses) + Steroid Burst

December 26 2012 - Realize that DS is crying when off abx, get another 10 days Biaxin & Valtrex (10 days only) again and Luvox 25mg upping slowly to 75mg

January 2013 - He is now crying a lot, cannot attend school.

January 4 2013 - We retest his blood and Strep and Coxsackie have gone up.

January 21, 2013 - Start Doxcycline (200 mg) and see improvement in general mood and crying bouts.

January 24 -Last day he leaves the house or showers.

January 25, 2013 - Stopped CBT, therapist in desperation playing mind games...nothing is working.

February 2013 - Start steroid taper, add Azithromycin (250mg).

February 14 2013 - HD IVIG

February 28, 2013 His eyes no longer so dilated, better able to hold a conversation, and engage.

March 14 2013 - HD IVIG

April 5, 2013 - No real progress from IVIGs (better mood, no rages, but still not "doing" anything)Add Augmentin XR again 2000/mg a day Saving Sammy dose.

April 10 2013 - Augmentin seems to help, add Valtrex XR and NAC, ubiquinol and folinic acid and other supplements.

April 18, 2013 - New psych doctor increases Luvox to 100CR, added Deplin, increased NAC (Nac-Acetyl Cysteine) to 2400mg.

April 30, 2013 Added Diflucan as we suspect he has yeast.

May 6, 2013 Increase Augmentin to 4000mg/day, Remove Deplin.

May 12, 2013 Take him off NAC, suspect it's making him more emotional (crying more).

June 17, 2013 Cunnigham test (Molecurela Labs) shows high CamKinaseII and PANDAS highly likely

June 28, 2013 Dr. S switches meds to Azithromycin only (500mg/day)

July 30, 2013 Admitted to Maimonides for 5 plasmaphreresis treatments

August 21, 2013 HD IVIG to replenish IgGs from plasmapheresis

September 9, 2013 Currently taking Augmentin XR (2000/day), Valtrex, Proporanol (for low TSH) and Diflucan.

September 17, 2013 Added Minocyline to help, as it's known to break through BBB.

September 24, 2013 Have seen reduction in ticcing and possible improvement overall.

October 4, 2013 - blood tests are positive for Hashimoto's and Neurosarcoid, We start oral steroids.

 

Present:

Pros - He is conversational, can focus on his computer sketch-up projects, nice to his siblings, respectful, talks with friends and enjoys being social.

 

Cons - He cannot leave the house, doesn't eat great, only goes to the bathroom (BM) on Sunday nights, doesn't shower or change his clothing. Only eats well from Thursday through Sunday.

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