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Everything posted by Pennmom

  1. I am sorry to hear of your discouragement. My child has not had IVIG so I don't know, but I hope that you get some help from those who have experience with it. Hang in there.
  2. I would like to add that "What to Do When You Worry To Much," by Dawn Heubner, is also very helpful.
  3. Thank you so much for the hope!! How long was your son's journey?
  4. How has dental cleaning gone for your PANDAS/PANS child? Were they on 250mg Clarithromycin or Azithromycin for 10 days surrounding the cleaning? Thank you!
  5. The only test that showed up abnormal for my child was Streptoccocus Pneumoniae. Have you tried to see a specialist in PANDAS/PANS? He/she may know better how to interpret the blood work in light of the symptoms. I wish you the best of luck for your son. God Bless.
  6. That's great! So happy to hear!
  7. Cmac, is your son doing better? Did he go back on antibiotics? I hope he is doing better :).
  8. I just wanted to share some books that really helped my child on their journey with PANS. These were sooo helpful in addressing behaviors: "What to Do When Your Brain Gets Stuck, a Kid's Guide to Overcoming OCD," by Dawn Huebner. "The OCD Workbook for Kids," by Anthony Puliafico "What to Do When You Dread Your Bed," by Dawn Heubner (This seemed to work miraculously) "What to Do When Your Temper Flares" by Dawn Heubner These were very helpful in gaining awareness about what PANDAS/PANS really is: "PANS/PANDAS Strength-Hope-Understanding," by Suzanne Gu
  9. I am very sorry. PANS is hard enough without the coronavirus problem on top of it. I am thinking of you. Have you reached out to a specialist?
  10. Hello, My child has been on two antibiotics for about 4 months and was gradually improving. Suddenly, (after taking Flonase for 4 days; not sure if it's related - nasal congestion at night due to possible allergies as per ENT) she seems to be exhibiting PANS behaviors that I hadn't seen since the beginning, and simply not doing as well. Just wondering if this has happened to anyone else? Did any of your children do well, then regress? Did they get back to improving again? After how many months was your child very close to their old selves? Thank you!!
  11. pchelle, did your daughter fully recover? How long did it take the strep to leave her system? How long was she on antibiotics? Thanks!
  12. Thank you so much Cmac; the hope is so appreciated right now.
  13. Cmac, that is great to hear. So glad your son has had a great improvement. Did he have other symptoms besides intrusive thoughts such as emotional liability, defiance, tantrums? If so, when did you see them go away during treatment? Thank you!!
  14. Thank you for the replies...did your children fully recover?
  15. Thank you... did your children forget about the things they said to you after they recovered?
  16. Has anyone else's child been diagnosed with PANS based on elevated streptococcus pneumonaie antibody titers? Thank you!
  17. How long do most kid with PANS stay on antibiotics? Is 8 weeks too long or damaging to the gut health or is it the best strategy to be aggressive? Is a combination the way to go? My child is on 5mg Azithromyin in the AM and 5mg Augmentin in the evening. How long on antibiotics do all symptoms remit the most? Can symptoms still remit while on prophylaxes after 8 weeks of full strength antibiotics? Thank you!!
  18. Would anyone be willing to share the content of their PANDA/PANS child's intrusive thoughts? Are very mean thoughts part of this?? Thank you!
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