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Williams_Mom

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  1. Hi - my son recently had his 4th IVIG and while I should remember how things went after his last 3 rounds (one last year, one this past April, and one this past Aug), I just can't. His IVIG was last Mon and Tues (11/7-11/8) and he doesn't seem to be much better. I asked him today if he felt any better and he said no. I have noticed an uptick in his behaviors in the past couple of days (really struggling to get in/out of the car, having to go back to a spot and start over again when walking somewhere, etc). I did notice a few positive changes - he showered night before last - and that was p
  2. Thanks for the response! It is *so* nice to have folks that get it.... Ahh... the raging. I don't know what to do sometimes. Overwhelming for me (and for him, too, I imagine). Wow, since your DD was born? How old is she? As for my son socially, he is struggling. He used to have lots of friends and essentially has lost most of them, I think. It makes him (and me) so sad. The first IVIG was great. The improvement in a week was just amazing. I have my fingers crossed for the second one to go the same way (after we get it through insurance..) Again, thank you so much for your response
  3. Thanks so much for your response. I am feeling a little bit better today but it was really nice to come here and see your response and know that someone *gets* it. In answer to your question, yes... he is on Omnicef 300 twice a day. I am not sure if it helps or not. I think that it does *some*, but not enough. Again, thanks so much! It means a lot!
  4. I just need somewhere to share my...I don't know what to call it...sadness and frustration, maybe?... where folks know what I am going through... I just sent my 11 yo son off to middle school to take his state assessment exams (this is only part of the day, though). These exams are important in that they help determine his class placement next year and I think that the school gets certain kudos/dings depending on how the kids do on the exams (but I didn't tell my son either of these things). My son is a mess. He wouldn't eat breakfast because everything was dirty - I had ruined everythi
  5. My non-PANDAS kiddo has been taking Rilutek for his OCD for months now (8-10?) with great results. Obviously, I don't know how it would work for a PANDAS kiddo, but it's been great for my preemie/Tourettes/ADHD/OCD kiddo. Sally
  6. Thanks - I think that I will take him tomorrow am. I will make sure to ask about the longer strep test. He is on Omnicef 300 2xday. Thanks so much for understanding my strep fear! :-)
  7. My son, William, has been complaining of a sore throat for 5 or so days now (no one else in the house is sick or complaining). It doesn't look super red to me and he does have a bit of a stuffy nose - but I just have mom training, not doctor training). I am trying to decide if I should run him by the peds or not. After he started complaining, we received a letter home from the school last week regarding the multiple cases of confirmed strep in his school. He is on antibiotics but I still worrying.... What would you do? Go to the peds, pay the $10 co-pay and feel stupid if they say it'
  8. My son (11 yo) was supposed to have his well-kid shots early this Fall - as well as the flu shot/mist. I asked Dr. L about it (he had the H1N1 flu last Fall) and she said no to all of them. I am happy to hold off for now.
  9. My 11 year old son had IVIG this past summer and the hardest past was getting a date that worked for the hospital. The doctor has ordered another IVIG and, this time around, our insurance company (Blue Cross/Blue Choice) is digging in it's heels and is doing everything that it can to avoid approving the IVIG. I have my fingers crossed that they will approve him soon. :-(
  10. Here's our experience: We have been patients of Dr. L for many years (oldest DS has other issues that we see her for and now middle DS is a PANDAS patient). I know that her scheduling was a little crazy this summer and I imagine that she is still catching up (plus, I don't think that she is back in the office quite full time yet) due to her son's incredibly sad accident. I have always found the office staff (and Dr. L) to be very responsive and caring. I am happy to answer any questions that you might have. Sally
  11. My son, William, had IVIG in the middle of July. His symptoms basically disappeared post IVIG (he did spend a week sleeping and feeling not so great but then was back to his pre-PANDAS self). We were soooo thrilled. We are now about 6 weeks or so post IVIG and his symptoms are coming back. Things are dirty again (his shirt that may have touched the carpet where his brother's underwear might have been...or the food that he was eating that hit his brother's hair <it didn't actually come within 1 foot from his brother>, his spit <this one is hard to deal with!>, that kind of thing
  12. My son, William - age 11, had IVIG on 7/15 and 7/16. He got through it OK (massive headaches and nausea - handled with Benedryl and Motrin) and slept a lot the week afterwards (but then, that might have been the Benedryl..). I called the neurologist today because I had to adjust the time of his follow up appointment (it is this coming Wednesday) and the medical scheduler asked me how he was doing. I raved about how well he is doing and how thrilled he and I both are. Half an hour later, he started back up with some of the behaviors that he had before IVIG (that I hadn't seen since then - h
  13. My son (almost 11) will be going back on Prednisone tonight. His symptoms are in high gear again (he keeps telling me that he is going crazy - and is very miserable). This will be his third time on Prednisone since Feb. Dr. Latimer had originally scheduled him for IVIG on the 21st, but that is on hold right now (obviously). My question is this.... I really can't remember how long it took to get some relief last time from the prednisone - any thoughts? He has a big baseball tournament this weekend and is hoping that he will be able to hold it together (he had to leave his 5th grade pic
  14. Hi - I am new here and very happy to have found this forum! I have 3 boys - and my middle one (10 yo - almost 11) has been diagnosed as having PANDAS. He was diagnosed a couple of months ago and I don't know if I am expecting too much, too little or.... He is almost finished his second month-long round of prednisone. He is also taking Ceftin (I think - we tried Zithromax but the insurance company would only OK 6 pills at a time which meant that I was at the pharmacy constantly and paying co-pays constantly... ugh) His behavior has changed since he started the pred/ABx - he has st
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