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maryangela

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maryangela last won the day on August 8 2018

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  1. My DS is receiving monthly IVIG and now has a medical exemption. Previously we were able to get pediatrician to write “Alternative Schedule” on his vaccine records for the school district. A couple times she wrote a letter saying “due to parents concerns” she is holding off on further vaccines at this time. Or once it was something like, “while monitoring for side effects of medication changes, we are holding off on vaccines for the time”. She was a pro-vaccine doctor, so I guess we were fortunate to get those letters. There are other doctors in the same practice that will not see a child that is not up-to-date on vaccines. Once when we changed pediatricians due to insurance coverage, we received a letter saying they would no longer see my son because he wasn’t up-to-date.
  2. This is a long shot, but have any of your kids had any of the antibody bloodwork done? My DS had only one dose of MMR (at age 10, due to constant pressure from our school district). He is now 14. Last month he had the MMR antibody test, and it shows him immune to all 3. It made me think that he may show immunity all other illnesses. I believe the schools will accept this in lieu of the vaccine. Is it possible to show immunity to Chicken Pox for instance with no known chicken pox illness or vaccine? Does anyone know of any other antibody tests aside from MMR?
  3. I sent details to your email, but the integrative doctors that I recommend are Donald Raden MD in Highwood, Illinois and Anju Usman MD in Naperville, Illinois. The IVIG has worked like magic. His OCD symptoms were so severe his former psychiatrist said he was Schizophrenic. He also had tics. Since IVIG, his OCD is 80-90% gone and tics are gone.
  4. I would highly recommend an integrative MD...someone open to unconventional treatment but able to prescribe pharmaceuticals when needed. My DS’s doctor is an integrative psychiatrist who specializes in Lyme (although DS does not have Lyme). We also had luck with an integrative pediatrician. Had some improvement with antibiotics, anti fungals (herbal and RX), but most dramatic improvement with IVIG. DS has been receiving weekly then monthly IVIG for 18 months now. Yes, it was the Cunningham Panel that I believe got the IVIG covered.
  5. I believe the PANDAS Physician Network recommends full strength abx before (not sure how long before) and 7 days after dental cleaning or dental work. My DS had his first major onset within 48 hours of dental work in 2012.
  6. @searching_for_help I am so sorry your DD was unable to get the treatment. I can completely relate to the issue of thinking she would jump out of the van. We were at that point less than two years ago. What an awful feeling when you don’t feel safe getting your child to and from medical appointments. I am curious what treatments you have already tried. My DS was also a severe case. I thought the day would never come when he would get better, but he did.
  7. @h202 Although he wasn’t diagnosed with ADHD until age 8, my DS also had ADHD and sensory issues since infancy. We used conventional therapy and treatments until he was almost twelve.... 2 1/2 years on anti-psychotic which increased OCD and caused violent behavior. We were continually told this was coincidental that it began at same time as medication. Prior to using medication, his first grade school year was amazing. This was before we had any knowledge of PANDAS. He was treated with back to back doses of abx for a sinus infection. Again, in retrospect, it appears that his ADHD and sensory symptoms subsided from abx. We have seen 2 different integrative MDs in past 2 1/2 years. Both say that his PANDAS onsets began as infant. He responded beautifully to abx in 2016, but wasn’t lasting. From my understanding it’s a 2-step process. First getting rid of infection, then turning off immune response (that’s where IVIG comes in). It seems kids that get the IVIG younger, respond better (i.e. don’t necessarily need continual treatment). I wish we knew about / were able to get IVIG sooner. As for the bug fear, it went away while we had abx success and from IVIG. The bug fear was only the beginning (this was right before he turned eight). It escalated to one of the worst PANDAS cases that I have read about. So bad that conventional psychiatrist diagnosed him with Schizophrenia. His turnaround from IVIG is miraculous. As a side note, don’t ever use Miralax. It has been linked to OCD and other psychiatric symptoms. Seems to especially affect kids with autoimmune issues (like PANDAS).
  8. @h202 The summer before my DS’s first major PANDAS onset, he developed a fear of insects. He avoided all outdoor activities at summer day camp, and would panic at home if a fly or fruit fly got in the house. In retrospect, this appears to have been the beginning of his onset. Although he had OCD symptoms, his psychiatrist said she would never prescribe a stimulant to someone with OCD, as it would exasperate the OCD. After a hospitalization, he was put on a stimulant (Focalin, later switched to Metadate) and indeed, he developed a compulsion to pinch me. This was his “happy” pill, though. It completely changed his mood when we gave it to him right before school, but he would “crash” and nighttime was unbearable. He also wouldn’t eat from after breakfast until bedtime, and lost a lot of weight. Ultimately after a year and a half, he developed priapism from the med after an additional dose was added during the school day. ....fast forward 4 years after taken off stimulant, and he his medication free. He has been receiving monthly IVIG for almost 18 months.
  9. Not sure, but my DS had “normal” strep titers in 2016, but responded beautifully to high dose Augmentin for 30 days...then rapidly deteriorated when Augmentin was discontinued.
  10. Yes, it was IV Ozone. It’s considered “alternative” in the U.S., so it definitely wasn’t covered by insurance. I believe Glutathione is usually administered with Ozone. My DS didn’t have it with first treatment, but had the Glutathione with 2nd treatment. He went into a rage after the 2nd treatment. Doctor said it was a reaction to Glutathione, and had me give him Molybdenum (mineral) to help him tolerate the Glutathione.
  11. @searching_for_help Yes, my DS did 13 Ozone treatments over 3 weeks in August of 2017. It was supposed to be 15 treatments, but his OCD symptoms were so severe, it was a safety issue getting him to and from the treatments. After about 10 treatments one of his OCD issues went away. This was where no one could speak while standing in a doorway or near a doorway. We are in a 2 bedroom condo, so we are almost always near a doorway. This was a huge relief when this went away, but he still had many, many more equally difficult symptoms left. Not sure if it would have made a difference if he completed all 15 treatments. After the treatments his bloodwork did show him clear of all infections. Ultimately, he was approved for monthly IVIG. He has had great success with these...nothing short of a miracle. He had one HD IVIG six months prior to Ozone. This was no where near as successful as the post-Ozone IVIG. It could be argued that clearing the infections with Ozone impacted the success of the IVIG.
  12. @mmw Thanks for the info. I will order it today.
  13. @mmw I am intrigued by the cryptolepis. My DS14 has been getting monthly IVIG (1 g/kg) for almost 1 1/2 years. His MD doesn’t generally use prophylactic abx. DS takes herbal antiviral, antibacterial and anti parasitic remedies. His PANS was severe. His tics are gone and OCD about 80% gone. Still has sound and odor sensitivity, focus issues and issues with executive functioning. Do you think the cryptolepis will help with these issues? I’m so happy hearing how well your kids are doing. Thanks for posting.
  14. Be sure to do blood test for Mycoplasma Pneumonia as well as Strep Titers. There are two strep titers test, but I don’t recall the names. Yes, sounds like PANDAS.
  15. If you are feeling things are ok that you logically know are ok, that’s a good thing, I think. Hopefully the ibuprofen will do away with delusional thinking that may have tortured you in the past.
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