EllTeeDee

My 11 yo has a pretty mild case of P.A.N.D.A.S. (thank goodness) but recently I noticed some escalation of OCD behaviors and less impulse control. We put him on a prophylactic dose of amoxicillin which seems to do well for him. The dosage depends on your child's age and weight, of course. We start him on the initial dose of 750mg, then give him 250mg everyday. During cold and flu season we take no chances. We have the school report any Strep illnesses immediately so we can be pro-active. He'll be on antiobiotics for the next 60 days then we'll re-evaluate. I don't know if it's wishful thinking but I truly notice a difference in his behavior after a course of antibiotics. We recently had to change Neuro-Psychiatrists due to new insurance and luckily this doctor understands the condition and is as pro-active as we are so I would recommend finding a good Neuro-Psych in addition to an understanding Pediatrician. Bring in on the literature you can find to your Peds doc and don't take no for an answer. Good luck. Lori

Hi Sarah, So glad you found a good clinic. I'm going to give them a call. Thanks for all the good information.

I think I'll give Dr. Mielke a call and have her see my son. Our regular Pediatrician just doesn't get it. Thanks for the info. Lori

Who is Dr. K in Chicago??? Thanks.

Hi Betty, My 11 year old son has PANDAS and we found a wonderful Pediatric Psychiatrist in Walnut Creek which is not far from Pleasanton to help our son. Deborah Sedberry, MD. I live about 40 minutes from you in Brentwood and used to go over to Pleasanton for many doctors. All I can say is make appointments with all the groups in the area and thoroughly "interview" them. A lot will not charge for a consultation. Good luck with your move. Lori

Hi all, This is a subject I am fascinated by in addition to the antiobiotic therapeutic dosing. My 11 year old son is 5 years into his PANDAS diagnosis and we are constantly on the hunt for alternative treatments. He has been on Zoloft as well as an ADHD drug for a few years now and we see a Pediatric Psychiatrist every 6 months. We're seeing her next month and I like going in with all the info I can. My husband & I disagree about the SSRI's (he's for/I'm against) but so far it seems to help his OCD and tics. What supplements are helpful in lieu of an SSRI? We've been giving him the Omega-3 supplements which he likes. I am very hopeful about trying another antiobiotic; we've given him azithromycin many times when he was exposed to Strep and becomes hyper, almost manic and tics more. I feel a therapeutic course is necessary for longer periods of time but of course my Pediatrician is skeptical but I'm going to ask our Ped Psych to prescribe Clindamycin and see how he does. I can't tell you how wonderful it is to have found this site! Lori

Michelle, This is a response to asking what you should do about school for your 6 year old. Make sure you communicate with the school that you require an IEP (Individualized Education Program). Meet with the teacher first thing to educate the teacher about PANDAS and do make sure you place your child with a teacher that is patient. My son got "sick" in 1st grade and his teacher was downright cruel to him. She had no patience and when I tried to have him removed from her class the Principal blocked my effort...BIG MISTAKE. Always listen to your gut. I learned my lesson and advocated for my son from 2nd grade on. I demanded certain accommodations (teacher choice, seat placement, allowing him to leave the classroom to regroup if he needed, finding an understanding "buddy" in school) and I always asked the teacher to call me immediately if he was having a bad day so I could take him home. Constant communication is the key to helping your child succeed in school. If your child takes longer to finish classwork or tests then the teacher should allow him/her to finish every other problem so that he can continue with the rest of the class schedule and not get too far behind. In the earlier grades it's easier but into middle school it gets tricky because there is so much to cover in one day. Having other moms to discuss PANDAS is so wonderful and I wish I had found this site sooner. Lori

How wonderful to have this forum to discuss PANDAS. My 11 year old son has the condition. Here are my answers to your informal survey: 1. In retrospect, at what age do you believe that your child's PANDAS/PITAND began? (not necessarily the same time it was diagnosed) AT 3 YEARS OLD 2. At what age did your child begin to speak? AROUND 2 YEARS OLD (BUT HE ALSO HAS A HEARING DEFICIT IN 1 EAR) 3. At what age did your child begin to draw recognizable objects (e.g. faces, vehicles)? 4. Has your child had food allergies? To what? NONE DIAGNOSED 5. Does your child have changes in bowel function during a PANDAS exacerbation? INTERESTING QUESTION, I HADN'T MADE THE CONNECTION BUT I THINK HE DOES 6. Does your child have joint hypermobility, i.e. can he/she touch his/her thumb to the inside of his/her wrist (ok to pull on it to check, but not to the point of pain)? NO 7. Do you have joint hypermobility? NO 8. Are there any mental illnesses in family members (not necessarily immediate family)? What are they? Mother's side, or father's? BIPOLAR, DEPRESSION, ALCOHOLISM, OCD, ADHD (OUR FAMILY IS A CORNICOPIA ON BOTH SIDES) 9. Are there any autoimmune diseases in either the child or family members? (e.g. asthma, rhematoid arthritis, thyroiditis, eczema, psoriasis, ulcerative colitis, lupus, etc.) YES, ASTHMA, ECZEMA 10. Does your child have trouble with the stitching in his/her socks? If so, is it worse during a PANDAS attack? USED TO BE A BIG PROBLEM BUT NOT ANYMORE 11a. Does your child have panic attacks? NOT REALLY, JUST VERY FEARFUL 11b. Is your child, or has he/she been, very separation anxious? NOT SO MUCH ANYMORE 12. Does your child tend to "overreact" to medications, particularly SSRIs, thus requiring dose adjustments below the typical range? NO 13. Does anyone in your family have mitral valve prolapse? NOT THAT I'M AWARE. 14. Does your child have any particularly striking "gifts", talent-wise? HE IS A FAIRLY GIFTED ACTOR 15. How would you describe your child's "regular" personality? HE IS A VERY HAPPY GO LUCKY KID

My 11 year old son was diagnosed with PANDAS at the age of 5 and used to suck on his shirt. He does this occasionally now. It's a self-comforting habit that happens when he's stressed. I wanted to replace this habit for something else that wouldn't be so obvious and I bought a package of guitar picks so he could hold something and keep it in his pocket if he was anxious. He could then have something to hold or rub. Since your grandson is so young another substitute should be found that is larger, maybe a stress ball. Chewing gum does help with this "oral fixation", again for older kids. Hope this helps a little. It is a long road you travel with a child who has this condition but with love and patience they can adapt and live a happy life.