MaryAW

I homeschool my PANS daughter in CT which has very loose (almost nonexistent) laws for homeschooling. Her school had no grasp of what she was going through, so I thought I'd better take control and teach her myself. It is so great. If she has a bad day, we don't do a lot of work. If she is feeling well, we can get a lot done. If she doesn't get to bed till late or wakes up and can't get back to sleep, we have an easy day. It is so perfect for a PANS/PANDAS child. Less stress for her, and less stress for me too. You can check Meetup in New Jersey to see if there are homeschool groups: http://www.meetup.com/ or you can see if there is a Yahoo Group for homeschoolers: http://www.groups.yahoo.com Both resources can help you with advice and social activities if she's up for it. Good luck!

During a flare Ibuprofin can help. I give my DD 2 doses a day. You should consult with your pediatrician before doing this. Make sure you check her Vitamin D level and get it up to between 50 - 80 (recommended by most PANS/PANDAS docs). My DD takes Azythromycin and we have had great luck with that. I give her 2 doses of probiotics a day - Florastor and Culturelle (not within 2 hours of ABX is best). Change things one at a time, so you know what is working/not working. Good luck.

Love this article! What hope it offers. Not just the fish oils, but the progesterone as well. We need to repair that bloodbrain barrier! I give my PANS daughter Nordic Naturals - Ultimate Omega Junior EPA 325 mg, DHA 225 mg per dose - which is 2 soft gels. I homeschool her and have REALLY noticed an improvement in her reading and math since we started.

Can anyone recommend a good CBT therapist for children in Connecticut or Westchester, NY? We live in lower Fairfield County, and it's hard to find someone who knows about PANS/PANDAS. I guess if they do a great job with the OCD, that wouldn't matter.

You could also try Dr. T in NJ. He specializes in PANDAS.

I was thinking about your son. I am wondering if his "Verbal vomiting" is a compulsion. Confessing is a compulsion, maybe this is a compulsion. My daughter used to "confess" all night long until we figured this out. We needed to help her stop. If it is, you need to use strategies. Maybe let him only express his worries for a certain amount of time or only express 5 worries at a time. Then go down to less time or 3 worries at a time. Then less, etc. My DD has had weird compulsions. She goes to Dr. Chansky, who literally wrote the book on childhood OCD. She also recommends talking back to OCD sarcastically, like - "Thank you so much OCD for making me worry about all of these things. You are sooo smart. I wanted to think about football, but this is so much more fun. What would I do without you?" FYI - We saw her during a bad flare last allergy season. My daughter was using her strategies, but the OCD would not stop. She said when a PANS/PANDAS child's immune system is so taxed, CBT will not work. In regard to my earlier post about Dr. Swedo and antihistimines, she did not expand upon that statement. All I know is that antihistimines block the H1 receptor, the receptor that causes inflammation.

Could there be an allergen present? Maybe something that was missing in December? Have you tried Zyrtec? At the conference, Dr. Swedo said that antihistimines can help our children. She suggested giving Benadryl at bedtime to help with sleep, 2 birds with 1 stone. When my DD is flaring I have to give her Benadrly and melatonin together before bed. I even wake up and give her a 2nd dose of Benadryl after 5-6 hours to help her sleep through the night. Getting my daughter's D level up has helped tremendously with sleep too. She is taking 3,000 IUs of D3 daily. Her level is now 70 ng/mL. Ideally you want them between 50 and 80 ng/mL.

I do know that Dr. Kovacevic, aka Dr. K, will do phone consultations. You can send him the results and discuss the symptoms with him. I believe he will then prescribe meds for your son if he feels that is what is best. You can call or email to ask the fee and if he will prescribe meds. His web site is: http://webpediatrics.com/curriculum.html FYI - I remember crying and begging for antibiotics for 8 months from the "professionals" at Yale. They wanted to put my DD on SSRI's and high power sleep pills, but were adverse to antibiotics. This was 2 years ago. I'm hoping they have changed since then, especially with Dr. Leckman and the whole IVIG study. Where are you located?

My daughter was immediately placed into NICU after birth, and I do believe she was placed on antibiotics. Have to confirm. Interesting theory you have. Compromised immune system caused by the poor gut, followed by way too many vaccinations; add to that strep. Only thing I have to contradict this is Dr. Agalliu's presentation at the N.E. conference. The lab mice developed OCD after repeated infections of strep. No mention of abx.

Vitamin D3. Get your child's level up to 50 - 80 ng/ml and you will definitely see an improvement.

My daughter was flaring up too, including tics, with no typical allergy symptoms. Her pediatrician thought the seasonal allergies might be the cause, so he recommended Zyrtec. She has been on it for 2 weeks now, and she keeps getting better and better. I started with 5mg but slowly upped it to the full 10 mg. Also, try googling "seasonal allergies pandas" When I did that it came up with some old postings from this site that may be helpful.

Check for Lyme and other infections (viral, other tick borne infections). I would be so quick to blame her symptoms on Azith...sounds more like Lyme/coinfections lurking. Also, check family members for strep (throat culture). Has she had a sleep study? Does she have tonsils? Is she on good probiotics? My dd has been on Azith since 2008 and have not encountered the problems you describe. She just told me yesterday that the OCD thoughts are back and have been scaring her at night. My husband slept in with her last night and she slept for 12 hours! Today she is like a different child. Maybe that was it? We'll have to wait and see. We will check for Lyme, etc. No sleep study. Yes tonsils. She does take Melatonin, and that had worked until this recent event. I've just upped the probiotics, Vitamin D and C to help her immune system fight things off. Thanks for your help

My 9 year old DD has been on Azythromycin for 9 months now. She was doing great until January. She had September through January with no symptoms!It seems like the Antbx are suppressing her immune system too well though, and when she did get a virus, she can't seem to get rid of it. Since mid-January her PANDAS symptoms have been coming and going. She's also been tired, not hungry, not sleeping well, and having stomach aches. I'm wondering if I should take her off the med to let her immune system kick back in. Any thoughts? Thank you : )