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About momtocole1

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  • Birthday November 2

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  1. I have posted quite a bit in the past. In this post I would like to ask for help. My son Ryan who has had PANDAS since he was 7 years old is doing better overall. He has had two IVIG's. He still has some tics and OCD but they are minimal. Anxiety is present at times but is managed much better. He is on prophylactic Zith. His biggest challenge is social skills due to years of lost development due to this illness. Where I am asking for help is I am wondering if anyone can recommend an attorney in the Southern California area. I am going through a very difficult divorce. PANDAS had a lot
  2. Please watch 20/20 tonight on ABC at 10:00 p.m. PST. I'm not sure what time it is on in other states. I'm in California. 20/20 was at our home back in April filming for 4 days. I chose to use medical marijuana as part of my sons treatment for OCD and anxiety due to PANDAS. He has also had two IVIG's over the last 6 months. Medcial marijuana has been just a component in his healing process, a tool in my toolbox to treat his extreme anxiety and panic attacks while we aggressively are working to stop the autoimmune reaction going on in his body. I was willing to put my son on 20/20 bec
  3. Hello, I wanted to take a poll to see who on the forum has received IVIG services from Coram Infusion Services. They are a division of Apria Healthcare. They are nationwide and they did my son's 2nd IVIG for 1/4 of the cost that we had to pay at Denver Children's Hospital. Could people let me know if they have used them, if they are going to use them? I spoke to one of the sales reps for the company, Colin Ruepelle, and I am going to negotiate with him to see if he could offer an additional discount to PANDAS families or possibly set up some type of a grant program, for families th
  4. I can't remember exact dose but us was Dr k"s, I think it is posted on his website. Brand was Gamunex Wonderful!! Now the qestions... What dosage 2 gr per? What is the type of IVIG? Name?/ Thanks Melanie
  5. I wanted to let everyone know that I found an amazing company that did my son's second IVIG. They are called Coram Healthcare. They have 75 locations across the US. They are infusion centers. Here is the link: http://www.coramhc.com/Map/Default.aspx phone number: 800-423-1411 Just to give you an idea on cost: When I went to Denver to the Center for Cancer and Blood Disorders to get my son's first IVIG, it was $42,000 on paper (what they billed Blue Shield of Calif.) I had a $3,600 deductible which was already met so they paid $31,000 of that submitted bill and the docto
  6. I know that is a heavy topic, but I need to hear this. I just posted a little bit ago about my son's post IVIG rages. It helps so much to know that I'm not alone. Please tell me about the worst situations, about when those of you wanted to take your child to a hospital, about when you thought they might not get through it or you might not. Thank you...
  7. Yes we are using Motrin. Dr. is not really experienced in PANDAS. I am going to set up another phone consult tomorrow with Dr. Kovasevic in Chicago. Thank you,
  8. My son 12 years old had his 2nd full dose (Dr. K dose) IVIG this past Wednesday and Thursday of this past week. We are 72 hours out and he is flipping out beyond belief. Threatening suicide, screaming crying, saying he can't take it anymore. Hitting himself in the head. He got out on his balcony and said he wants to jump but said he is too afraid to die that he will go to ######. He also has periods where he is very happy and even though the OCD is there, he is playing and having fun. I am so scared. I don't want to take him to the hospital, but I will if I truly feel that he is t
  9. My son had IVIG 36 days ago. There are so many wonderful things that are happening, but so many troubing things too. I remember some people posting about difficulties about a month after IVIG. Can those of you that so a big dip around 30 days please share your experiences. The good things that are happening is that my son is reaching out to friends. He does not have too many any more, but he wants to reach out to the ones that he still has. He is feeling so much of the OCD going away that it is like he doesn't know how to live without it because it has consumed his life for so lo
  10. One of the most difficult things that my son is going through is issues with sleep. Prior to IVIG (30 days ago) he was having trouble settling down to go to sleep, but he would get to bed at 10:00 or 11:00 vs. 8:00 or 9:00, so I went with it. Since having the IVIG he is literally up the whole night. He can't go to sleep until about 4:00 a.m. Because he is so exhausted I don't want to wake him up the next morning. I know this seems completely crazy, but I am just letting this happen because of his healing process. His OCD symptoms are so much less than they were. I really am
  11. I feel so bad that I have not been on the forum. I have been going through some type post traumatic stress stuff I think! My family and friends have been very concerned that there is something really wrong with me. I really am fine though, just pulling in and really focusing on my son's healing process. It has been 30 days since the IVIG. We have definately seen the "sawtooth" recovery pattern. I will start with the not so good, so I can end with the really good: Old OCD behaviors are cycling back in. They go out as fast as they come in. The hard part is that my son, reall
  12. Dear Gat's Mom, I am just about to start tackling the yeast with my ds12. He just had IVIG 30 days ago and has been on high dose antibiotics for 3 months. I have a DAN dr. that I am working with, but he is so aggressive. He is used to treating yeast with kids that are autistic. My son is not autistic, but I guess yeast is yeast is yeast. I am afraid to do the anti-yeast treatment that it will do something to his brain that I can't bring him back from. Does that make sense. I know I have to tackle the yeast but even when I have just tried small doses of pro-biotics my son really h
  13. Have any of you contacted your local newspaper or TV stations to request an article/interview on PANDAS? I contacted our local paper on Friday. I want to "go loud" on this disorder. I am really angry that there are so many kids suffering. If it were not for this board I can honestly say I don't know how I would have ever gotten IVIG for my son. When I was coming home from the airport on Friday night, my son was commenting on all the beautiful Christmas lights around our neighborhood. We did not get lights this year because money has been tight and we needed to spend on the trip to
  14. Hello Everyone, I have good news, we made it through IVIG. If ANYONE is having any difficulty obtaining IVIG for their PANDAS child or getting it covered by insurance, they need to go to Colorado. I first want to thank Elizabeth (Elizabeth and Keith) for referring us to Dr. Thomas Smith, he is at the Center for Cancer and Blood Disorders at Children's Hospital in Littleton, CO. The staff was amazing, accomodating, a very loving to my son and to me. They were so interested in PANDAS. Dr. Smith has only treated one other child with PANDAS. Ryan did amazingly well on the pla
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