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Tamistwins

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Everything posted by Tamistwins

  1. Dcmom how was it coded what made insurance accept it and approve for it? I so want that miracle, something that will help these kids. My kids are 9.5 and 3.5 and we have been dealing with this from the age of 5 most likely age 2 or younger but 5 when it hit like a ton of bricks. I'm tired I want my kids to be happy.
  2. Melanie and dcmom how old we're your children at that time? Who at NYU did this? I'm from nj.
  3. Hi I was hoping to get positive and negatives from those of you who had plasmapheresis for your children. Would you recommend ?what positives have you seen from it vs other treatment you previously had. Which doctor did you use and was it covered by insurance? Tia tami
  4. I gave one dose to my son and it made his eyes wild. Was so scary I would never use it again.
  5. I think there's a list on here somewhere about OCD symptoms. There may be things that you just don't recognize as being a tic. My son used to kiss me too often , purse his lips and blow a kiss. At first it's cute but I learned it was a kissing tic. Any vocal noises, humming is a vocal tic. I remember reading a long list if things that were tics.
  6. Lol this is mild in comparison to my home!
  7. I feel for you and I completely understand how you feel. I have 3 pans children. The earth shattering piercing screams is enough to make one go insane. I feel at times I'm living in a mental asylum. I think it's the OCD, when their compulsion isn't met that makes them scream their ear piercing screams with their complete being. I didn't answer right, or drop what in doing to answer them in that split second makes them go off. It's heart wrenching and its unbearable for us having to deal with it. Buy yourselves several sets of ear plugs. I'm surprised I haven't gotten deaf by now. I pray you find answers and find a treatment that helps. I'm sure others will chime in with great suggestions. Have you tested for infections other than strep, mycoplasma, coxsakie, Lyme, Ebv all triggers.
  8. http://www.amazon.com/gp/aw/d/B001F0R7VE/ref=redir_mdp_mobile?ref_=pe_175190_21431760_M3T1_SC_dp_i1 This is what I have ordered but we haven't tried it yet.
  9. I agree, we have one if the mthfr genes and would be interested in reading an easy explanation as well!
  10. I was told to use methyl B12 and that it regulates antibody production and regenerates brain function.
  11. I think it is best to treat underlying infection before Ivig. The Azithromycin might cover the mycoplasma as well as the strep however if it doesn't then switching to biaxin or minocin would be better. For Lyme, combination of abx is what LLMD usually treat with. Our Lyme doctor didn't think it was a bad thing to have Ivig, thought it is good to help fight infection and build up immune system. Others seem to think otherwise. It's a difficult decision I hope someone else can offer you better advice.
  12. I just found out that my 3 pans children have mycoplasma and high titers to coxsackie a. My older son also has another recent infection to EBV or chronic and never cleared. We will be trying antivirals for the first time and hope that it helps all this craziness.
  13. Jennifer I haven't been there in a long while but I was once scheduled late and when I arrived was told they no longer stay late and would only be able to do a few hour infusion. Please call and make sure.
  14. Hi does anybody have a current list of what labs should be drawn. Anyone have Dr. Trifiletti's recent tests he requests. Thanks so much. My children have been off of antibiotics for some time and something is definitely brewing in them. I would like to know what labs to request other than ASO Anti-Dnase B, Mycoplasma. thank you
  15. In sure u can post this Do not take a child with PANDAS to Boston Children's Hospital. I am working with a family whose PANDAS child was admitted to BCH due to eating issues. This is the second family I have represented within two months regarding BCH with the same fact pattern. In both cases, BCH has immediately told the parents that PANDAS/PANS does not exist, cut off the child's antibiotics, reported the parents to Mass child protective services, and had the parents trailed by guards at the hospital. In both cases, BCH has actively encouraged children's services to remove the child from the custody of the parents unless the family signed a voluntary agreement to place the child in a locked psych unit. I will be in court tomorrow in Boston fighting Mass CPS on behalf of the current family who is trying to retain custody of their child. FIND A DIFFERENT HOSPITAL
  16. I asked my homeopath about hyos for my daughter and she said its not the right remedy because it has a lot of inappropriate sexual behaviors. Just an FYI
  17. We haven't tried this but this sounds like would be a great fit for my daughter. Have you tried it?
  18. According to the llmd that Dr. B works closely with the Lyme test he was using wasn't accurate. I'm sure this isn't the reason why he stopped but it is better this way where people aren't getting false results.
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