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AlwaysWorriedMom

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  1. I’m having a crisis with my son and nobody EVER responds to my posts. I don’t understand this website, and I give up on everything. I give up on life at this point.
  2. Can anyone advise me what tests my son should do before he gets IVIG? I know it’s crucial to make sure he doesn’t have any hidden infections as that may affect the efficacy of IVIG, and I’m not knowledgeable enough about this to figure out which exact tests need to be done beforehand, and what the results mean.
  3. My son (almost 7.5) has tics only PANDAS (no OCD). We live in Canada and were planning to go to the US for IVIG but now I’m reading some people are saying PEX is better for tics and IVIG is better for OCD. Any insight would be greatly appreciated! If we do go with IVIG what’s a better dosage - 1.5g/kg or 2g/kg? Seems that PANDAS doctors have different opinions on this.
  4. We tried it for about a year and a half and made zero difference for our son. We tried many supplements and dietary changes, and the only time we ever had any improvement was with antibiotics.
  5. Wow really??? Not a single response? Thought I’d get some help here but I guess not.
  6. One more thing...we gave Advil for several days which has always helped significantly, and this time it hasn’t helped at all. Maybe because his inflammation level is normal right now?
  7. Oh yeah forgot to mention that his blood tests also showed low leukocytes, which from my understanding is related to immunity
  8. Background: My 6.5 year old son started having nonstop tics last July, along with emotional breakdowns. This went on every day for 3 months until finally a doctor agreed to try antibiotics, and 48 hrs in the tics were gone. We did 10 days of amoxicillin. He had done blood tests right before we started the antibiotics and his ASO was 296 and ESR (inflammation) was 12. He did another two blood tests, one a month after antibiotics and the next one was another month after that. Results were (respectively): ASO: 236 ESR: 18 ASO: 250 ESR: don’t know 3.5
  9. Has anyone’s PANDAS kid contracted COVID 19? If so, please describe symptoms and what happened afterwards in as much detail as possible. I’m sure I’m not the only one worried about what will happen to my PANDAS son should he get Covid.
  10. We haven’t had any problems yet but my son has always been on antibiotics during his cleanings. He did, however, have a flare up when he had a very loose tooth and when a new tooth was pushing through his gums.
  11. Thank you Cmac. Yes, I’m the one home with both my kids as I haven’t been working during Covid, but my husband is extremely hands on when he’s home. It’s just that he’s not home much during the week and I feel really burnt out. It truly sucks to always be watching my son for tics instead of enjoying him. I’m so nostalgic for the days before PANDAS too over my life. 😢
  12. I’m in Quebec and I’m not on Facebook (wondering if it’s worth opening an account just to join that group). it’s such a rollercoaster and each time he gets worse again it’s as if I never learn because it hits me hard. The last few days were good. Today was bad. He has a tooth pushing through but I don’t know how much I can blame that. I guess we’ll see within a few days, but then there’s always something else causing a flare - illness, teeth, etc. I am just so damn miserable all the time, and I don’t know how to train myself to accept that this is life for the next god knows how long.
  13. I’m feeling so angry and sick these days. My son is only 6.5 and we’ve been dealing with this for almost a year. I still can’t seem to accept that this is our life now. I’m angry that we have to go through this when we have done everything possible to ensure our kids were healthy and safe. I look at my friends’ kids and think “why us? Why are we being punished?” My son had a relapse in the beginning of quarantine and after speaking with Dr Schulman in May we started him on Clavulin (the Canadian version of augmentin) with a plan to taper the meds once he was doing well for several weeks
  14. I’m so sorry This disease really is so frustrating, because when things are going well, we’re constantly watching and waiting for the shoe to drop...and when things are not going well....life is just terrible We are pretty new to PANDAS so I’m not the best person to give advice for what you should do, but I’m sending you love and support and I hope your child gets over this episode quickly.
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