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  1. This is the link http://pandasnetwork.org/malegislation/ 3bmom was talking about regarding the bill for insurance coverage for PANDAS kids in Massachusetts. I also have another post about the bill H.984. Not looking to hijack this post but this is awesome! A Bill that would cover the cost of IVIG. IVIG has been a blessing for my kiddo but the cost is a killer. We do what we have to for are kids!
  2. If you live in MA send a letter to your representative supporting this bill. https://malegislature.gov/Bills/188/House/H984 http://pandasnetwork.org/malegislation/
  3. T_mom summed it up very well. A upbeat nurse was a huge factor with my DD. She kept my daughter at ease got the iv in and played with her all day. You may want to ask about having some anti-nausea medication on hand. My daughter has had IVIG twice and both times after day two she has had vomiting and bad headache for about five hours. This showed up about 5-8 hours after infusion. Good luck you will get through this!
  4. Not one for words but your words speak the truth. When I was at the hospital a year ago with my DD in the Neurology ward. That's when first hand I realized that I can deal with PANDAS. What I saw tore me apart. I know that it has been a blessing moving forward for me. So many people don't have a chance at a cure to helping their predicament. PANDAS will have a cure just have to find the right path.........................................
  5. My child was seen at BCH in 2012 with what I thought was PANDAS. I was very nervous taking my child there with all that I had heard. Thanks to you I let them know I was well aware of their past track record with kids with possible PANDAS. Long story short my kid did get a amazing doctor that was not blind to PANDAS but they just couldn't find anything medically wrong. While they never would come out and say it was PANDAS they would call it presumed PANDAS. Our child was treated with antibiotics & IVIG. In the end the doctor was willing to continue to treat our child but was getting a lot of pressure from the powers that be. My child did open a lot of people's eyes and I hope some learned from our child but I know not all but hopefully some. Did I get lucky?? I just wanted to let people know that BCH does have some good doctors that are not closed minded to PANDAS. I do agree that if you think your child has PANDAS that BCH may not be my first choice. I'm grateful for most of the doctors that treated our child at BCH. We no longer take her to BCH. I'm not trying to stir the pot but I just wanted to let people know my story.
  6. Long time reader first time poster. Let me say Thank You for all the information I have gathered from you all. I must agree with Nicklemama. We have done IVIG twice the first one showed unbelievable results. It brought our kid back to almost 90%. Eight months later she had the second one. It helped greatly but not with the same results but definitely beneficial results. So yes its worth it in my opinion.
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