Good Evening, I am a worried mom and I have been reading and reading about PANDAS. But… I still have some ?'s and I am not sure if you would be able to help me. This has been the toughest week of our families lives but I do feel we have moved quickly but still have ?'s that I would love some answers too.
My ?'s –>
1. taking 10 day antibiotics (amoxicillin) when is the normal time to see improvement if any
2. How often do children have remissions (I see they can get it back each time when exposed to strep but any idea on a % for relapses)
3. should I be pushing for a longer period of antibiotics if at day 10 she does not show improvement?
4. Are siblings likely to have this too (i have a 10 month old concerned about the future)
If you have time to read here is our story. We live in Tampa FL and I called yesterday to try to get in with Dr. T at USF asap but they said it may not be till October .My daughter will turn 3 in July and in the middle of her dance class last week had a sudden attack she started rubbing her eyes looking in the mirror as something was wrong… then started twitching her head over and over. As I just finished school a couple years ago for LMHC (but not practicing currently) I immediately knew something was wrong. (She had met and exceeded every milestone and never once given us a behavioral problem we have felt so lucky). The responses tend to come at different times but mainly during TV and high times of concentration. We took her to the Zoo Thursday but she could not walk straight without us holding her hand. Within 48 hours of seeing the twitch I took her to the Dr.'s showed them the video; the pediatrician started her on antibiotics right away saying that this could be related to strep (great pediatrician). The in-office strep test was negative and we did not realize they sent out a culture. I noticed her lymph nodes behind her ear were inflamed and new it had to be an infection but I had to prove it. Within the last week our poor daughter has seen 6 drs. including of 3 Pediatricians, 2 Neurologists and an Optometrist. We have had blood work, an eeg and an MRI. We kept being told by the Neurologist that we needed to relax that this is a tic to take her off the antibiotics and they could medicate her for the tics if need be (we opposed and kept her on them). Finally, 2 days later her blood work came in and said there was an infection… again they said they didn't think it was related but could not tell me what the infection was. We did not listen again and went right to her pediatrician. He opened her chart and saw her results were in from the lab… positive for Strep. He said he is 50/50 on the diagnosis but he had not seen this but a handful of times in his practice. I explained that I had strep 5 months ago and she was sick the same time but we went to a walk in and they only tested me for strep and gave us both antibiotics. I told him I have had strep 6 times since she was born he decided to retest both of us. We are now waiting on those results and hopefully will have results on Tuesday. She is on day 7 of the antibiotics and we are still seeing the tics. I am worried that at day 10 if they are still there and they won’t prescribe her more that it may get worse. I am scared to death and want to make sure I am doing everything I need to do to make sure we get her the correct treatment. Any guidance would be greatly appreciated!