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Everything posted by momoftwinsplus1

  1. Contact the NIMH right away. I just heard Dr. Swedo speak at the OCD Foundation Conference. She wanted to word passed along that if a child had a life threatening condition due to PANDAS (such as eating/drinking refusal) they would help the child get the appropriate treatment.
  2. I was wondering if there is anyone else on the board from Kansas????
  3. My daughter's pupils were also dialated. We could hardly see her iris' any more. That was a year ago and she was very, very bad. After her IVIG with Dr.K. the first sign that she was starting to get better was that her pupils were a bit smaller. She has made a recovery and pupils are normal now. I am glad you are finding people to treat you child.
  4. No, but there was a psychiatrist at Children's who was familiar with PANDAS and helped to get our family connected with another doctor. I can PM you his name if you would like.
  5. It seems like it might have gone up a bit. It is the drug that is so expensive. We paid almost $10,000 a year ago with Dr. K. Would I do it over again? YES!
  6. IVIG was the best thing we ever did. It brought us our little girl back. It took about 8-10 weeks to see good steady improvement. It has been about 10 months now and she continues to improve.
  7. I know Dr. K was treating a 19 year old with IVIG the same time we were there with our daughter. Maybe that could be an option??
  8. It seems like my daughter experienced "turning pages" until about week 10 post IVIG. She continue to improve gradually even now and it has been 8 months since. She is back to being my little girl I know and love. I remember it being so heartbreaking watching her lose ground, but stay patient and strong...she will improve, it just takes time.
  9. You could tell them you would like both. A behavior plan does not have any legal "teeth" to it like a 504. If your child has a 504 it would have to follow him/her through the years. It may be the school is not understanding what PANDAS is...it is a health condition. With a behavior plan they should also do a functional behavior assessment, it may be hard to identify function when what is triggering the behaviors is a cold, strep etc. Therefore I would think a 504 is more appropriate because it will allow for accomdations when she is struggling during flairs. I do work for a school district and have a child with PANDAS, feel free to message me if you need other ideas or help. Good Luck!!
  10. My daughter only had one IVIG with Dr. K. Her behaviors would improve and then regress until about 8 weeks post IVIG and then we started to see continual growth. We are almost at the 6 month mark post IVIG and she is doing great. It was a very anxious time for us waiting to see if she would improve and heartbreaking when she would regress. With that being said it might be worth the time and money to do a phone consult with Dr. K even if it is only to ease your mind a bit. He has really seen it all.
  11. Such a lovely post. What you say is so true. We are also 4 months post ivig and now how our daughter back. I am so thankful to this message board and to people like you.
  12. We were told to expect flips and it was probably part of the healing process. We have gone through that. It is hard to experence after having so much hope. Our daughter has always bounced back after a couple of days and continues to improve. I hope you have the same experience. Prayers for you and your family
  13. So happy to hear!! I have been thinking about CBT for my dd. How has it helped your child??
  14. My daughter is 9 weeks post ivig. I will say is that I do not regret it. It was very expensive for the treatment and the traveling but I would do it again in a minute!! While my dd has a ways to go yet, it has been the only thing that has brought healing to her. After PANDAS hit she was pretty much nonfunctional and unable to leave the house at times, IVIG is the only thing that brought my little girl back to me. I wish you well as you weigh all your options.... Shannon
  15. Just an idea...in my state there is a waiver called SED through the mental health clinics. I know that PANS is a medical condition, but maybe your child will qualify with the behavioral concerns. If the child qualifies it will give you the medical card and pay for attendent and respite care. I am so sorry about your struggles... I can relate to how difficult it is to juggle family, work, and everything else with a child who has PANS. I hope you are able to get some relief soon.
  16. I asked my dd9 and she said she would be interested. She does have some language delays and is much improved, but still not fully recovered. She has good and bad days. We live in Topeka, so it should be fairly easy.
  17. I live in KS as well. I got a list from a site. I called one of the drs. on the list and she felt like she didn't have enough experience. We went to see another in KS and it was a total flop. He wanted to run a bunch of expensive tests and didn't think my child had PANDAS. Dr.K. thought she was "classic PANDAS". Bottomline we have not had much success in this area.
  18. Sure, I would be happy to talk with you. I will try to figure out how to message you...I am new at this.
  19. Thank you both! I found another mother that was honest about what her child went through. It has helped me a little, knowing that we are not alone in this. Would you guys be opposed to a phone call from me?
  20. Yes, our dd has severe intrusive thoughts...she was spending all day pacing and talking to herself. She had a IVIG a couple of weeks ago and they have started to decrease some.
  21. My dd9 just had an IVIG a week ago with Dr.K. Dr. K. is so funny. He said that this is the parent "freak out" period and "do not freak out". Unfortunately I may not have followed his advice... I was wondering what have been other people's experiences post-IVIG with their children.
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