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  1. Yes, my son started with school refusal in second grade. He missed from November till the end of the year. In fifth grade he missed a few months and since we had switched him to public they pushed the issue and actually locked him in a room, called the police, etc. Finally after having a para educator follow him around for months he decided to do it himself and had a good 1/2 year. Now we are in 7th grade. This is the first year we found out it was PANDAS and we are going after it with everything we have. School refusal started in October. We had PANDAS diagnosis in November with Dr. L, tonsils out in December, and are currently in Florida at the Rothman center program. I am hoping he will return to school when we get home in March. You are not alone but are ahead of the game with an early diagnosis. Good Luck.
  2. We are right behind you with my son(13) starting at the Rothman center on Feb 25 for 3 weeks. Any info/advice you can give once you get there would be wonderful. Good luck! Stacy
  3. I would just add that if you take an appointment with Dr. Latimer in MD they will also put you on a cancellation list and move you up as people cancel. We got moved up months and were able to get in quickly. Get on all the cancelation lists and get you daughter in as soon as one of the Pandas doctors has an opening. Just remember that your daughter is going to be OK. It's hard to believe now but you will figure this out. Good luck Stacy
  4. My son just had IVIG last week with Dr. L. He is 109lbs and the cost was $10,850. Good luck
  5. We tried it once, my son was much younger at the time, but it was scary. He had some paradoxical reaction and was wired for hours and thought he was the king of some kingdom. We threw it out after that. It may work for some but watch carefully the first time you use it. Good Luck
  6. We have tried all manner of punishment and tolerance with our 13 year old son. He has had PANDAS for five years and we only found the diagnosis last November. Since we thought the behavior completely voluntary and controllable we have gone so far as to take every toy and enjoyable item out of his room and lock it up. We have taken away TV and computer for months. In the throws of a PANDAS flare (when we had no idea what was going on) it did no good. He would still have rages, school avoidance, and all the other nutty behavior. Without his toys he would fold up a piece of paper into something elaborate and play with that. The punishment did no good, only increased anxiety. Until he was in a better place no amount of punishment improved his behavior. That being said we did draw the line at physical confrontations. There was to be no hitting etc. and that is where we drew the line. When he was better he would never imagine doing the bad behaviors that were previously commonplace. It was like a different child. That is what make me think you have to make concessions when a child is in a PANDAS flare. Just draw the line when it comes to safety.
  7. I would probably tell them that the behavioral manifestation of the PANDAS is Tourettes-like. Hi, Reading your post I felt like I was looking in the mirror. My son is in 7th grade as well and diagnosed in November 2012. He hasn't attended school since Oct. 2012 and we have had exactly 4 homebound school sessions as well. I just wanted to let you know that you can wait until after the testing to determine a diagnosis for an IEP. My son has had these issues since 2nd grade and we had never heard of PANDAS before last Nov. We used emotional disorder (generalized anxiety disorder)as well as a differential between and high IQ and avereage processing speed from testing as the basis for an IEP. He was not attending school regularly when tested but was able to do the testing one on one. The IEP hasn't really done that much except you get taken more seriously and it gives him a break if he needs less work or to leave class etc. I would absolutely remove the tourettes label. It does no good and he very well may have no tics after successful PANDAS treatment. Good luck. It's so hard to believe that another parent has the same issues as I do. I feel like I have PTSD and it isn't over yet. StacyH
  8. The thing that has worked for my DS13 is ridperdal. We first had to use it when he was 8 and then again this fall after a major strep throat led to finally finding our pandas diagnosis. I don't want to use it long term but when your house is on fire... Good luck and remember that she will be ok and get better. stacyH
  9. My son is 13 and just diagnosed with Pandas 7 weeks ago. We have been searching for answers for 5 years since this first appeared in second grade. In this latest pandas episode (since Oct.) exhaustion has been a major symptom. He started sleeping through school, next I literally could not get him up in the morning or feed him breakfast. His therapist called me into his session one day and said he had fallen asleep mid-sentence. I thought acting tired was a way of avoiding anxiety... school, etc. Now I feel this is a biological symptom of the Pandas as it seems to be one of the first symptom he exhibits as it's coming on.
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