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maryangela

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maryangela last won the day on August 8 2018

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  1. @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).
  2. @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.
  3. 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.
  4. 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.
  5. @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.
  6. @mmw Thanks for the info. I will order it today.
  7. @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.
  8. 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.
  9. 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.
  10. @Wombat140 I’m not sure what you mean by effects of Ibuprofen? If you’re talking about anti inflammatory effect, I would guess it wears off in 4-6 hours.
  11. @pic13 You are correct about the acronyms. Have you considered having your son eating the Manuka Honey? I’ve been giving it to my DS 14 this winter. He had a flare in fall, and used antibiotics, but they tend to cause gastrointestinal issues, so I switched to Manuka Honey. Please post any updates on AIP diet. I’m curious.
  12. @jeremyssmith When DS received the 30 day Augmentin, he did not get worse before better. Later that year a different MD gave him 14 days Penicillin for an ear infection. His OCD and tics began improving after 3 days, but he regressed after abx stopped. Again, he did not get worse first. Was your son tested for Mycoplasma Pneumonia (blood test)? In 2017 my DS responded well to Clarithomycin after Mycoplasma showed up on his bloodwork. Apparently, Augmentin does not help Mycoplasma. The unfortunate reality is that until you find a PANS / PANDAS specialist, you will need to do your own research. My DS is also 14. He was diagnosed with SPD as a baby. Current PANDAS MD says the SPD and PANDAS are from the same cause. Our current solution is monthly IVIG. He’s been having this for 15 months. He fluctuates from 70-90% recovered. MD is treating him for encephalitis. It sounds like your DS may have encephalitis also, possibly triggered by the vaccine. Not to get back into the vaccine issue, but even though the potential vaccine side effects are listed on a government website, most MDs are not trained to recognize or treat a vaccine side effect. They are hyper-focused on the agenda of getting all kids vaccinated.
  13. I have some insight on the abx, but also something to add about Vaccines (I promise I won’t go on too long). My advice is to never make any anti-vaccine comments to any conventional medical professionals. Once you do, they will stop listening to you. My DS is currently receiving monthly IVIG, so for the time being we have an excuse not to vaccinate. It appears most PANDAS docs are anti-vaccine, but you may need to read between the lines. Even they don’t want the hassle of being labeled anti-vaccine. As for the abx...My DS is a severe PANDAS / PANS case. He was prescribed a high dose of Augmentin in 2016 for 30 days. We saw no results for the first 10 days...then on day 11 he began to rapidly improve. By the end of the 30 days, he was 90% improved. He began to regress about 5 days after abx stopped. MD would not prescribe that high dose again. Since, we have seen some improvements from abx, but never the same as that first time. I believe it was Dr. Frankovich from Stanford that said if abx are working, and they are stopped, it is very difficult to recapture the success.
  14. I tried Oil of Wild Oregano for my DS in 2016. This was before I could find a doctor to evaluate him for PANDAS. The only info I found on dosing was on YouTube. The information I found (not necessarily for PANDAS specifically) recommended pure Oil of Wild Oregano (not diluted with olive oil, etc). I bought it from Amazon, I think, and it shipped from Greece. YouTube info said to use high dose. If I recall, I gave him 15 drops, 4 or 5 times a day. I had to mix it with orange juice. It was so strong and even mixed with orange juice, would burn his lips and mouth. Since DS complained so much, my DH agreed that I could give it to DS for only one month. DS was severe at the time. Incomprehensible OCD symptoms. We began seeing improvement in about a week. By the end of the month, his OCD symptoms went from a 10 to a 7. Looking back that was huge. I would definitely try it again if I needed to. I just wonder if the less concentrated versions work.
  15. @beenthere Our DS’s MD also said the peer-to-peer was useless. The call was actually initiated by the insurance co. when they were reviewing the appeal. I paid the MD $250 for the call. It was from that call where MD called this encephalitis protocol. Not sure if that was his term or the physician from insurance co. I did look it up, and remember seeing monthly IVIG for up to 18 months. DS14 is in a bit of a flare right now. He had a sinus infection and tested positive for Mycoplasma Pneumonia. Took abx for 3 weeks. Some OCD symptoms returned, but this is nothing compared to what we dealt with in the past. I also realized the Briova Rx was not adjusting DS dose with his weight changes. They always asked his current weight, so I stupidly assumed they adjusted it. Will be adjusted for next infusion in 2 weeks. This is the last IVIG that is approved for now. We saw improvements right away when he started weekly LD IVIG about a year ago, but after a couple, he would get worse after each infusion and take a few days to start improving...then he’d have another infusion, and regress. I did not like the weekly schedule. Once he started monthly protocol, we saw improvement after first treatment, and dramatic improvement after the second treatment (within days). Not sure if having the 12 (I think) weekly infusions prior to starting monthly impacted the success of the monthly infusions.
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