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MaryAngela

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  1. @bws1565 My DS now 15 had PANS symptoms since he was an infant. He didn’t have MMR until he was 9 or 10 years old. I believe he had a reaction to DTaP at 6 months old, though.
  2. @Robinhubb It’s common for insurance to deny first IVIG request. Is the doctor sending an appeal letter? My DS’s IVIG was approved after peer-to-peer call with insurance physician. It was submitted under Autoimmune Encephalitis code. Also our MD uses Briova (infusion service) for IVIG. They handle the appeal. DS has been getting monthly IVIG for over 2 years. It saved his life.
  3. @Ashly My DS’s strep titers were normal in Spring of 2016, but Rheumatologist said to try antibiotics anyway. 6 or 7 of his tics went away completely. The 7th went away with IVIG. She said that the abx may have an anti inflammatory property or although there was no recent strep exposure, the misdirected immune response (attacking the brain) never shut off from the last strep exposure.
  4. When we first used this in 2015, I think we worked up to the 900mg 3x daily over 3 weeks. Try doing a Google search of the Yale clinical trial. We probably followed the dosing from that, as far as what to start at. My advice if you go the medication route, is that less is more. The first time we tried Prozac it was a disaster, but had some success years later on a very low dose. Most of the antipsychotics cause aggression if the dose is too high. Be sure to document behaviors and doses. Your son’s symptoms sound like PANDAS/PANS. Have you gotten strep and mycoplasma titers done?
  5. At the time we had the most success with NAC, DS had just been weaned completely from all meds due to side effects. He had been on prescription meds for 2 1/2 years, which helped OCD a bit, but not tics. The meds made him aggressive, negative, hateful, revengeful, etc. Although doctors told me it was coincidental and not from meds. He developed priapism from the meds, and finally we were told to wean him off everything. That is when he started the NAC. Within 3 weeks we had our happy, good-natured child back, after 2 1/2 years of misery. This lasted for 7 glorious months, until he experienced his most severe onset of PANS. Current MD linked this to Miralax use. If your DS has ever used Miralax, I will share the details.
  6. @Ashly We had huge success with NAC for my DS a few years ago. We used a high dose (900mg 3x a day). This was the dose from the Yale clinical trial. It may have taken 3 weeks before we saw improvement with OCD and tics. Current MD says it’s important to use magnesium along with NAC. DS 15 is currently getting HD IVIG, but recently asked if he could start the NAC again (which we resumed last week).
  7. @xh1688 My DS now 15 had very similar symptoms about 2-3 years ago. When his OCD was triggered, he would need to get completely undressed (even in public). This was the only thing that would cleanse his intrusive thought. He said that the compulsion was so strong, it didn’t compare to the embarrassment of being naked in public. He was triggered so often that he stayed naked at home 90% of the day. He also had tried to get out of a moving car when his OCD was triggered. Antibiotics had worked beautifully for a month, but MD wouldn’t prescribe that dose for any longer, and he regressed on lower dose. Ultimately a PANS specialist determined DS was experiencing encephalopathy which was triggered by Miralax. He has been receiving monthly HD IVIG for almost 2 years. His OCD is 80% gone.
  8. It is prescription. It’s made at a compounding pharmacy. I was hoping my DS would start last Saturday, but it wasn’t shipped when I thought. Should arrive tomorrow. I’ll keep you posted.
  9. I saw one positive post on Synapsin nasal spray. My DS 15 will be starting it today. He was a severe PANS case. OCD and tics 80% gone from almost 2 years of monthly HD IVIG. He still has focus, anxiety and executive functioning issues. I’m wondering if anyone else has tried it, and how it worked out.
  10. @mamafour What dose of Azithromycin for your child’s flares and for how many days? How old is your child?
  11. I don’t recall the dose because it was the liquid form. He took it 3x a day for 30 days. I believe it was the equivalent of 500mg 3x a day. DS was 11 at the time. When it was lowered to 2x a day, it stopped working.
  12. My DS responded very well to Clarithromycin after showing high Mycoplasma titers. It’s common for kids to get yeast issues from antibiotics even while taking probiotics, so it’s important they have the probiotic 2 or 3 times a day. Be sure to space the probiotic at least 2 hours away from antibiotic. I’ve used Gutpro (expensive) and Jarrow (reasonable). I wouldn’t skimp and use a generic grocery store or drug store brand. Yeast can cause issues itself. I also give my DS a yeast control supplement, especially while on abx, and for a few weeks after. We’ve used Candicid Forte and OrthoFlora yeast support (Protocol for Life Balance). I’m sure Whole Foods also sells yeast control supplements. I prayer that your daughter finally gets some relief from the abx. Keep us posted.
  13. My nephew is currently experiencing eye pain after HD IVIG. Does anyone know if this is temporary?
  14. difficulty "motor planning"; i.e. conceptualizing and figuring out what each part of his body needs to do in order to move a certain way or complete a task (what is an unconscious sense to us, becomes an active, conscious, frustrating sense to them)
  15. Could this be a motor planning issue? If so, I suspect it could be due to a flare.
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