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My 5 yr old b/g twins have struggled with strep since last summer. It caused my son to be in the PICU with a collapsed lung and strep pneumonia. Since then his twin sister has had it a few times. They both have had positive throat cultures taken in February.


His behavior is fine, while her's has changed. My dd behavior has gotten out of control over the past several months and I came across PANDAS when researching strep and problems in school. She can’t remember things, she is irritable, unreasonable and angry. Large pupils- is that a symptoms too?


My dd is having a T & A on Monday. She is on a 26 days regimen of Azithromycin.


Do I need to ask for a biopsy of her tonsils (large and cystic)? What do I need to be doing to help her get better? Does she need to be on anything else? Should I have her tested for allergies too?


I am waiting for a referral to a PANDAS dr at Stanford (we live in CA)


Any advice is welcome, this is all overwhelming…

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Yes - dilated pupils is commonly seen in PANDAS kids.


I would insist on IV abx during the procedure, and strong abx post -op as well. You may want to switch to something stronger than Azith, we went with Augmentin after surgery and it worked well for us. But abx during the procedure is important because if there is strep in the tonsils it can let loose during the surgery. Some docs do a clindamycin/rifampin combo prior to surgery to try to get at as much bacteria as possible beforehand. But we did not do this.


I would have them culture the tonsils for strep and everything else. It can help identify what the problem may be.


We had a wonderful experience with T&A, my son was 100% immediately post op and had no tics/behavior issues for 6 weeks after. Unfortunately, the second we tried to lower his abx, he tested positive for strep about 6 weeks post op. But it was a game changer for us. He responded so well, 3 weeks later we were back getting our mild PANDAS dd's tonsils yanked too.


But some folks have reported that their kids have flared badly from the procedure, most likely from the bacteria released during surgery.


Best of luck!!

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I am glad you are getting a referral to see a PANDAS/PANS Dr. We live two miles from Stanford and are fortunate to have some really wonderful Dr.'s in the Bay Area that understand PANDAS/PANS. I am wondering who you are being referred too.... possibly a Dr. with the initials JF. Some Dr.'s at Stanford get it better than others and hoping you find yourself with the right one. I am assuming you are local to Bay Area?


You are always welcome to PM through the forum for other and sometimes complimentary Dr's to assist at looking at all the issues your child may have.


By the way, I also have 5 year old boy/girl twins and an older son who recently turned 9.

Edited by SF Mom
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