Pennmom

All the best!

Amy Montgomery

My daughter started battling PANS 3 years ago. We went to a specialist that gave her antibiotics for more than 8 months. I truly regret this length of time; especially since it did not seem to help as much as we would have thought/hoped. About 2 years after this started, we went to a functional medicine CRNP. She gave us a list of supplements for our daughter to take that helped dramatically within one week! We still have our ups and downs, but these supplements made a big difference, much more so than all the antibiotics. These are the supplements: Omega Longevity (Aceva) 1/2 teaspoon per day The Extinguisher (Mechanism Wellness) 1 per day 2,000 IU's vitamin D3 Probiotic (we used Culturelle kids packets; one per day) Multivitamin (we used Flinstone gummies) RelaxMax (Xymogen) (half a capful per day at 10 years old) We used these supplements for about one year. We now adjust as needed. I truly hope and pray that these supplements can help your child as they did ours. Blessings PS There was also a supplement recommended called Copa Calm by Ortho Molecular. I think the nurse practitioner said one or two drops per day as needed. I did use this during a really bad flare and it was helpful. I did discontinue after that week when things settled down. My daughter's cheeks were flushing and I read that it can be from too much GABA. It really helped, but I believe only wise to use for occasional, serious flare ups.

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.

I would like to add that "What to Do When You Worry To Much," by Dawn Heubner, is also very helpful.

Thank you so much for the hope!! How long was your son's journey?

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!

I wish you the best of luck for your son. God Bless.

That's great! So happy to hear!

Cmac, is your son doing better? Did he go back on antibiotics? I hope he is doing better :).

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 Gushansky (for the child) "A Parents' Guide to PANDAS, PANS, and Related Neuroimmune Disorders," by Doran et al "Childhood Interrupted; a Complete Guide to PANDAS and PANS," by Beth Maloney * very informative "Pans, Cans, and Automobiles," By Jamie Candelaria Greene I hope these can help your family.

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?

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!!

pchelle, did your daughter fully recover? How long did it take the strep to leave her system? How long was she on antibiotics? Thanks!

Thank you so much Cmac; the hope is so appreciated right now.