Nearlydoc

Crazy to admit, but sometimes I envy the parents whose children got PANDAS at 8 or 10 or 12. Since our daughter got PANDAS at 3, we do not have a baseline comparison. When all her symptoms started, I thought it was terrible 3s. Now when we meet with educators, doctors, to discuss behavior I find we are at a loss since she was so young and we had not gotten to know her as a learner or a student. Anyone else identify with this? Having had untreated PANDAS for so long also leaves me wondering if we are taking the best action. Right now she is just on a 2pd dose of Cefdinir. I would really appreciate hearing from someone who has dealt with a long term case of PANDAS.

We also need to do precert for IVIG thru CIGNA. What all did you have to do? Feel free to send me a pm.

The 4 pm crash is an accurate name. Our dd takes 2 tspn of Cefdinir in the am and 1 in the evening. Adding that evening dose helped. Strep is still not under control as we cannot miss or give medicine late. Wondering if I should switch to azith. Having a hard time getting the Teva or Sandoz manufactured azith here.

Thanks so much for all the comments. We have worked hard to catch up by doing the dolch words this summer. That was the big thing along with math. She was also given a summer packet. Since she began treatmentw/ Cefdinir, she has made huge improvements academically. Still has social issues, touches too much, hugs too hard, etc. She is improving on focus after I added another dose of Cefdinir in the evening. She wakes up undermedicated. Obviously the strep is still present if each dose of medicine seems so crucial. The teachers in the special class are poor communicators, so we never really know how school is going since we drop off early and pick up late due to work schedules. As I said if she were in the regular class all day, the decision would be an easy one. We would repeat first. But as she is making such strides, I hate to give her work that is beneath her especially since the work in the pull out class is adjusted for her level. Again you have helped me see this from more angles.

Hi all, New to the forum but have really appreciated all of the info and the commraderie. Our dd has had PANDAS for 3 years during which she has struggled academically. She was diagnosed Dec. 2011 and has been on Cefdinir since Feb. She is not strep free as any missed or late dose is immediatelly apparent in her behavior. We finally have an IEP and 504 for her. She attends a private school where she is in a pull out class for individual instruction in Math and Language Arts and attends a regular class for science and social studies. She has improved academically since treatment, but there is a lot to catch up on since she has been battling PANDAS without treatment during these crucial foundational years. The teachers in the pullout class (the PLUS class) think she should "repeat" 1st grade and not advance with the class she has been with since Pre-K. The argument is she still struggles with reading and writing and that the 2nd grade science and social studies would be difficult. She is the only child in her grade in this program. Next year there will be an additional child in the PLUS class who is attending 1st grade. If she were going to be mainstreamed in the reg. 1st we would do it hands down, but we just don't have the strep undercontrol to generate the focus she needs to be in a regular class. Should our dd stay in 2nd or repeat 1st?