Possible PANDAS, 3 pos strep in 8 months. How to proceed with uncertainty?

[belou]

Hi,

We suspect PANDAS w/ 6yo daughter, some background.

- She started getting unusually worried about fires last December. Lasted over a month. She didn't want to be alone in the next room. However, since then she seems to have chilled out about it.

- In May she picked up a self licking compulsion, talking about how she didn't have time to wash her hands. It sounded like an OCD-like compulsion, yet nothing like any OCD I've read about, and the opposite of hygienic. She says she can't stop. She will lick the back of her hands or sides of fingers and wipe them on herself, her shoes, things she drops. She'll do this 2-6 times in a row. Then do it again within 2-20m. She also stopped wanting to sit on our bench to put on shoes in an unspecified avoidant way. She will avoid opening metal door knobs. She says they smell and doesn't like it. These symptoms have maybe only slightly improved since onset in May.

We recently we put this together with a timeline of strep. She tested symptomatic positive for strep in early December. Then symptomatic positive in early May. And now she has just asymptomatically tested positive again in early July. (I had come down with strep recently and the nurse suggested we test our kids as asymptomatic carriers.)

Maybe this is all coincidence. But we are in the Kaiser system, and from what I understand PANDAS isn't on their radar or something they will entertain as a possibility. We are planning to get her evaluated by their therapists for these behaviors, and work with the primary to clear the infection.

If this is PANDAS, what clues would we look for? Should we be giving Ibuprofen instead of Tylenol when she gets sick? Any other tips we should use managing future illness or behavioral issues? 

Thanks in advance for any advice.

[MaryAW]

DO NOT WAIT for the dam to break! My daughter was similar to yours about 7 months prior to the full-on PANS. Other symptoms she had before the full onset were: frequent urination, decline in schoolwork, taking longer to do tasks and handwriting changes. This was 2011 and there was very little awareness, so we struggled. We thought it was PANDAS but didn't know where to go or what to do.

You need to find a doctor who understands this ASAP. You may have to pay out of pocket, but time is of the essence. If it is just caused by strep, she needs to be on long term antibiotics. There may even be an herb you can try. Definitely try giving ibuprofen to reduce inflammation in the basal ganglia.

For doctors who treat PANS/PANDAS go to Pandas Physicians Network: pandasppn.org It has a list of doctors sorted by state: 

https://www.pandasppn.org/practitioners/

I highly recommend you get the amazing book - What to Do When Your Brain Gets Stuck: A Kid's Guide to Overcoming OCD (on Amazon). It will help both you and your daughter with OCD.

There are three great books to learn about PANS/PANDAS on Amazon by Jill Crista, Dr. Scott Antoine and Dr. Nancy O'Hara - all doctors whose children had PANS/PANDAS. They discuss testing and treatment.

Make sure to check for mold (RealTime urine test), Lyme and other coinfections (Igenex) and especially bartonella (Galaxy Diagnostics for this coinfection). Also check IGg levels to be sure she can fight whatever she's fighting.