emma

Aubie is very underweight right now at about 66 pounds, she is almost 5 feet tall. She has 400 mg of Amox 2x a day. I have had her on differing amounts of Amox for many months. Do you think there is a better antibiotic or dose to consider?

Aubie had surgery on Friday, August 7th so we are in the early days. She has been on prophylactic antibiotics for many months and is now on a higher dose twice daily but it doesn't appear to be having a big impact. Aubie had a rough time with anasthesia so perhaps that too was a big contributor. Aubie has also been on a long list of supplements that I was required to stop a full week before the procedure so that may have set her up for a harder time too. I feel like I don't know for sure what the right moves are and the doctors in our life seemed to have conflicting feelings about the tonsillectomy but it made sense to me to do it. Next week I have an appointment at a highly regarded clinic in Lenox Mass where they will test her blood for all sorts of things that the conventional doctors don't typically concern themselves with in the hopes of finding more information to lead us to more healinig. The treatment they suggest will all be based in diet and supplements so nothing invasive!

Aubie had a several good months over the winter which we wrongly celebrated as indicating the end of PANDAS. On April 17th she got sick with strep and over the course of 3 days she lost the ability to read, write, speak and had massive large motor tics. She missed the last 3 months of school and was making progress on recovering some of the lost abilities just prior to the tonsillectomy. She wasn't terribly stressed about having the surgery and she seems to be healing appropriatly from the surgery but she did have a hard time waking up with the anesthesia so that is likely a factor too. Also, I have Aubie on a long list of supplements and they required that I take her off of those a full week prior to the surgery so I am wondering if that didn't also set her up for a rougher recovery.

My daughter had a tonsillectomy in response to chronic strep with PANDAS. The strep (and PANDAS) came right back. She does have fewer sinus problems though. How old is your little girl? How long ago did you have the tonsillectomy and was she treated with antibiotics for some time after the surgery? My daughter is 14. She had her tonsils out @ 3 years ago. After the surgery she was on, I think, 14 days of amoxicillan. But she wasn't checked for strep for easily 6 weeks after surgery...nobody wanted to swab her healing throat, and it was assumed that she would not get anymore strep infections. About 2 months after the surgery, she was in really bad shape, PANDAS-wise and was put back on antibiotics. It took another 3 months or so to finally get prophylactic Abx. Wow. I continue to be struck by how many wrong assumptions the medical professionals. How long did you use phrophylactic antibiotics?

My daughter had a tonsillectomy in response to chronic strep with PANDAS. The strep (and PANDAS) came right back. She does have fewer sinus problems though. How old is your little girl? How long ago did you have the tonsillectomy and was she treated with antibiotics for some time after the surgery?

I have been using this site for a long time as a resource but only tonight became a "registered" user. Thank you to all of you that have been contributing to this site. It has been so nice to find a place where others know the equisite pain of parenting a child with these types of problems and share support and advice! My daughter, Aubrey, is 10 and has suffered greatly with a PANDAS diagnosis for over 18 months. There is a long list of treatments including IVIG which we have tried. Last Friday I had her tonsills removed in hopes of at least preventing any future cases of strep. Tonight her PANDAS symptoms appear to be on the rise and I was wondering if anyone else has seen this type of response to a tonsillectomy? If yes, I would love to hear if you you found any medicine or supplements especially helpful.