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maryangela

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maryangela last won the day on August 8

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  1. maryangela

    For the adults with PANDAS /PANS....

    @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.
  2. maryangela

    Diatomaceous Earth

    @bws1565 What symptoms improved using this? How long before you started seeing improvements?
  3. maryangela

    Flare protocol and prognosis?

    This doesn’t directly answer your question, but I think a loose tooth would be considered an infectious trigger...from hidden bacteria being unleashed. My DS first severe onset occurred 48 hours after having dental work. He was given psych meds for 2 1/2 years, which made things much worse. He only began to improve after I found out about PANDAS and began treating with natural antibacterial and NAC. When my DS had his second and most severe onset, we saw limited improvement from natural antibacterials, but took 7 months to find a doctor who would try an abx. He became completely debilitated during this time. He no longer had an active infection (normal strep titers), but responded beautifully to Augmentin. It was miraculous. Unfortunately, the high dose was only prescribed for 30 days, and he declined. We were never able to recapture this recovery with abx alone. In the book Shadow Syndromes, one of the Stanford MDs talks about the difficulty “recapturing” the recovery from abx if they are stopped.
  4. maryangela

    Mild pandas? Something else?

    My DS 14 wasn’t diagnosed until age 12, but was told that his first onset was probably when he stopped eating solid food at age 14 months. He only would eat jarred baby food after that. This occurred after a virus. It took years for him to learn to chew after that.
  5. maryangela

    I need help with ASO/IGE Labs

    @violet94 My DS now 14 never had strep that we knew of, but had high strep titers from time-to-time. He responded well to a 30-day high dose of Augmentin in 2016, even though his strep titers were normal at the time. When I say responded well, I mean went from being completely debilitated to being almost fully recovered for three weeks. It took 11 days to kick in, but was like a miracle when it did. Unfortunately, the doctor would not keep him on that dose, and symptoms returned on lower prophylactic dose. About a year later, another MD put him on Clarithromycin due to testing for Mycoplasma, and he responded well to that. As for interpreting that tests...sorry but I can’t help.
  6. maryangela

    For the adults with PANDAS /PANS....

    @beenthere My son also has a PANDAS/PANS diagnosis, but MD submitted IVIG request under AE. We paid out of pocket for one HD IVIG 18 months ago, because insurance denied. Current MD was able to get approval though. Initially denied, but ultimately approved. MD uses BriovaRx infusion service. They handle to appeal process. DS was most recently approved for monthly HD until the end of 2018 (7 HD treatments). This did involve a peer-to-peer call with insurance. MD said he may request more if there is regression after treatments end. Although not diagnosed until 2016, DS has been dealing with this since at least 14 months of age, when he stopped eating solid food following a virus. It seems the one-treatment IVIG protocol works when the child is diagnosed and treated right away. We recently added SBI Protect (Bovine IgG). I’ll let you know how that goes. It’s been less than a week, and I think it takes 8 weeks to see improvement. I’ve heard other parents describe similar products as IVIG in a capsule. I hope your son sees some relief soon. My DS was severe. He was completely debilitated. I thought this day would never come, but he’s doing great. I wish the same for you.
  7. maryangela

    For the adults with PANDAS /PANS....

    We did not see dramatic improvement for my DS 14, until he was put on the encephalitis protocol for IVIG, which is monthly HD. He has had 5 so far. This was started after limited success with weekly LD IVIG. He has shown lasting improvement with each treatment. Tics gone, OCD 90% gone. He still has anxiety, focus issues and sound sensitivity. We are hoping for some relief from those symptoms with future treatments.
  8. @Clt_mama I had the recent epiphany that my son’s most severe PANS onset was caused by Miralax. He has been receiving monthly HD IVIG for encephalitis. His tics are now gone, as well as 90% OCD. MD agrees that Miralax triggered the encephalopathy. The irony is that even his constipation was misdiagnosed. He was having groin pain as a side effect of Metedate. He still has ADHD symptoms, anxiety and sound sensitivity. MD started him on SBI Protect to heal the damage of the Miralax. It’s only been 3 days, so I’ll keep you posted.
  9. I am beside myself about what I read over the weekend about Miralax...that it has been linked to tics, OCD, aggression, hallucinations, etc. My son’s most severe flare completely coincides with the use of Miralax. How did I not know about this? It seems like it completely destroys the gut flora / immune system. So scary, because pediatricians continue to prescribe this for kids.
  10. maryangela

    New Tic

    My DS14 sees Donald Raden, MD in Highwood, IL. He’s an integrative psychiatrist. He specializes in Lyme, but also treats PANDAS/PANS. My son tested negative for Lyme, although he was positive for Mycoplasma on & off. He’s treating him for Autoimmune Encephalitis, using IVIG, and herbal antiviral, antibacterial and anti parasitic remedies. He will do phone consults, I believe.
  11. maryangela

    New Tic

    @Bttrfly1 DS did 1st HD IVIG with Dr. K 18 months ago. He does not take insurance and the surgical center he uses, did not take our coverage. We paid out-of-pocket. My new employer is self insured. They initially denied 12 weekly LD, but approved after written appeal. This included results of the Cunningham Panel. Doctor wanted to switch to monthly high dose, which was denied, but then approved after a peer-to-peer phone call with insurance. We are very fortunate for the coverage. We were on the verge of selling our condo to pay for treatment. 2 years ago, my DS was pleading with me to “figure this out and do whatever it takes to help him”. As for switching from weekly LD to monthly HD...it is the same amount of immunoglobulin over a 4 weekly period. Our integrative MD, generally recommends weekly LD, because it lessens the side effects (headache, nausea), but the way it worked for us was that after the LD infusion, it would stir up symptoms for a few days, then DS would begin to improve, and then it was time for another infusion, and symptoms would get stirred up again. The monthly HD is working out much better. My DS also is low IGA. He gets Gammagard immunoglobulin. I believe that’s best for low IGA. I don’t think Dr. K uses Gammagard. He uses the same for everyone, I think. I’m sorry you are frustrated with Dr. L’s office. She seems wonderful, but so many sick kids...hard to keep up. We are fortunate that DS’s integrative MD is very responsive to email.
  12. maryangela

    New Tic

    @Buttrfly1 This is probably not what you want to hear, but my DS14 is showing dramatic improvement, only after IVIG protocol was changed to HD monthly. He’s had 4 so far. He had previously had 12 weekly LD (1/4 HD), but we didn’t see nearly as much improvement. He was a severe PANDAS/PANS case. He’s about 90% recovered. Still need to work on the psychological impact of missing out on 6 years of his childhood, though.
  13. maryangela

    Advil

    The first doctor to treat my DS (now 14) for PANDAS gave him 30 day high dose of Augmentin. She let us start before his blood work came back. At the time, he was completely debilitated by OCD and tics. He had no improvement for the first 10 days, but had dramatic improvement on day 11....and continued to improve rapidly for 3 weeks. Ultimately, when the labs came back his strep titers were normal. Most PANDAS / PANS docs know that a negative strep test does not rule out PANDAS. Also, the issue may be Mycoplasma Pneumonia (which entails a different antibiotic)...or could be strep and Mycoplasma.
  14. My DS was also on Nystatin for a couple weeks, without any side effects. The Organic Acid Test is a urinalysis.
  15. My son sees Donald Raden, MD in Highwood, IL. I’m not sure if tics alone could be considered PANDAS and I don’t know much at all about TS, but I assume your son’s tics could have a physiological cause. I know my DS’s tics decreased when treated for yeast. He also improved after taking an anti parasitic herb. Seems crazy, but it’s working. The Cunningham Panel (blood test) should show if there’s an autoimmune immune component, I think
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