bigmighty

The few meetings I heard of were down south of Potomac Mills mall. We never attended.

We are in Herndon, not far from Dulles airport. You?

Ours is Dr. Della Eng Tow at Capital Area Pediatrics. https://www.capitalareapediatrics.com/Public/Default.aspx She does not write our long-term antibiotics prescriptions. Dr. Carolyn Walsh, an internist in Leesburg is handling that. But Dr. Eng Tow is definitely PANDAS friendly. When we come in and request a throat culture, they just give it no questions asked. I remember hearing the nurse out in the hall saying "but he doesn't have a sore throat or a fever" and hearing the doctor respond "he's a PANDAS patient - they get throat cultures whenever they request them. That should be on his chart. Please make a note of it." We like her a lot. She has written several very detailed letters to the school that have helped tremendously with 504 accommodations.

In her new book, Beth Maloney recommends recommends David Band, MD in Ashburn - northern VA. He's a psychiatrist. http://www.crossroadspsych.net/davidbandbio.html

DS is in 10th grade taking trig/pre-calc honors. He does not know his times tables and has to count on his fingers for 5+3. He is in remission from OCD, but still struggles with memorization when numbers are involved. When he has his biggest exacerbation, the math skills were much worse.

DS got that way when we used the safety coated ones that are supposed to be better for your digestive system.

We were concerned about the same possibilities. Internist highly recommended invisalign as far less likely to result in inflammation or infection. DS is nearly done with them (9 months) and has had good success and remains in remission. They were $700 more expensive than traditional braces,

Ugh. So sorry. I remember bursting into tears (privately) after our appointment with a renowned specialist in our area that had taken six months to get. The doc reprimanded my son (age 12 at the time) and told him to stop wasting his time and buckle down and do ERP and start managing his life-long mental illness. He actually told him "You are mentally ill. You will always be mentally ill." After I peeled myself up off the floor and sobbed a bit because there was no hope, I made an appointment with yet another specialist that took more months to get. That doc is the one who helped get our son into remission. Don't give up. Take a few days to clear your head and then figure out what's next. It's exhausting, but you're doing it. Keep up the good fight.

DS qualified for a 504 plan for accommodation. Much easier than an IEP. Here's the letter his pediatrician sent to the school. To Whom It May Concern: XXXX is a XX year old boy (DOB XXXXXX), who is well known to our practice. In Month/Year, XXXX received a definitive diagnosis of PANDAS Syndrome by the National Institute of Health in Bethesda, MD. His NIH diagnostic team included Dr. Susan Swedo and Dr. Paul Grant. PANDAS Syndrome is an autoimmune disorder that causes inflammation of the basil ganglia area of the brain. This results in behavioral, motor, and neurological challenges that are sometimes severe. Currently, XXXX displays characteristics of motor deficit hypotonia, and also struggles with math facts and rote memory. It would be appropriate to offer any accommodations that might assist him in his school and/or testing environments. These may include, but not be limited to: calculator use when calculators would not otherwise be permitted; the opportunity to use a keyboard on written assignments; modified PE assignments, as needed; and additional time on tests. If you have any questions, please do not hesitate to contact our office. Thank you for your consideration in assisting XXXX in a successful academic experience.

http://www.medicalnewstoday.com/articles/270670.php

I had never heard of Nick Vizzini. But when I saw the notice of his suicide, I went to Amazon and read the excerpt of his "fiction" book It's Kind of a Funny Story, closely based on his own life. Within the first three pages, it already mentions his always having extremely large pupils, his ongoing interest in peeing and a few comments about food issues. Can't help but wonder if he had PANS. The family released a statement saying he had been doing much worse in recent weeks. The guy had a 2 yr old. Just pondering whether the kid brought strep or something else home and it had an impact on the dad. Could be totally off base here. If you are interested, read the excerpt and tell me if you see what I'm talking about.

Yes DH received 2g/kg at NIH

http://www.change.org/petitions/fda-administrator-margaret-hamburg-don-t-ban-home-genomics-kits?share_id=AVanNhjtOs&utm_campaign=autopublish&utm_medium=facebook&utm_source=share_petition

http://www.nlm.nih.gov/medlineplus/ency/article/003537.htm This says normal dnas b is under 170 in children.

http://www.1011now.com/home/headlines/Wood-River-Woman-Shares-Her-Medical-Journey-with-PANDAS-231500951.html

http://www.thetowntalk.com/article/20131109/LIFESTYLE/311090013 Feeling like this wasn't at all helpful to these grandparents

Overnight onset severe OCD. Suddenly no items that had been in school were permitted to touch anything in the house without a lengthy home sterilization process. From no rituals or any inclinations toward OCD to 4+ hours of extremely odd daily rituals. Three weeks after onset, the family therapist we'd contacted met w/us and said she expected PANDAS. Three weeks later, the internist to whom she referred us confirmed PANDAS.

My DS was accepted into the NIH clinical trial and his titer score was deemed "too low to calculate" during his initial exacerbation. He did have an elevated Anti Dnase B test, indicating some sort of autoimmune challenge. But he has never had an elevated titer score then or during subsequent cases of strep.

Doc ordered it.

Huh. BCBS paid for the test both for me and my son.

Doc said that the lab test for the two most common MTHFR gene mutations is a one vial blood-draw that would cost about $100 out of pocket. Ours only cost a $15 co-pay. The test is covered by most insurance including, I believe, medicare/medicaid. Perhaps you can ask the new provider when you go next week.

DS used to miss a lot of social cues. Talked too loud at times and seemed unaware he was doing it. Stood too close for others' comfort sometimes. If someone asked what he had done for a science fair project, he'd launch into the long-version with every last detail of his experiment instead of saying "Mine involved snow melt-off rates. What's yours about?" He would attend a group event with our family that included many others with whom we'd been friends for years, but he might attempt to hide behind me and would not make eye contact when others were speaking to him. Standard spectrum stuff. All of that disappeared within 48 hours of methyl b vitamins. Comments he has made since make it clear that he understands motivations and feelings of others and sub-text within conversations in ways he never seemed to before.

I suspect that they were trying to prove that IVIG caused the improvement, NOT the antibiotics. So they were going with the lowest possible dose so it could not be assumed to be curative and negate the rest of the study. I must say, we were devastated at the time though. To have DS back for a few weeks and then lose him again was awful. But I do understand their reasoning.

I heard from NIH staff that DS was not the only one in the clinical trial who got strep after IVIG. I heard from other parents of kids in the trial that NIH changed its recommended prophylactic antibiotic and dose at some point during the trial, but don't know to what.

At the start of the NIH clinical trial, they were recommending only 500 mg per week of Azithro. DS weighed in the 72-77 pound range at that time. They wanted him to take it all at once in a single dose, but he was on liquid medication back then and it was multiple syringes of medication and it upset his stomach. He ended up getting permission to switch over to taking half of an Azithro 250 pill 4x weekly. He was only on it for a brief period before he got strep and was switched over by ped to a high dose of Cefdinir.