bws

YES! Duct tape really works!!!!!! However, what I did is keep it on all the time, and change it when it gets wet. When it starts getting so itchy that you can't bear it, you can take it off. The warts will disappear within a week or so.

Yes, we saw her in May 2009, and at the time she told me she disagreed with the doctors who are prescribing azith for PANDAS. Maybe it's changed?? Dr. S. recommends Zithromax. Specifically Teva brand. She does have some sort of protocal that she distributes to drs. who request it.

UPDATE: My cousin has seen Dr. S. last week, and called me today to report significant positive changes. Hopefully this is her answer. What a pity on all that time and money wasted. WHY IS THE MENTAL HEALTH COMMUNITY AGAINST THIS DX?????

We are doing Zithromax, and specifically Teva or Sandoz brand. THE OTHERS DON'T WORK AS WELL. Vitamin D also helps; it is an autoimmune suppressant. We also observed my daughter being better in the summer - due to sunlight. We are giving her at least 2000 IU daily. We really saw a difference with the D, even before we got to a Pandas doctor and started abx. Hope this helps.

Bood results for this child: ASO 547 DNASE B 362 Does this indicate Pandas?? Child has had numerous streps in the past.

So, is there a blood test that would reliably indicate Pandas? We are treating my daughter with abx anyway, just wondering, for someone else that I am trying to convince, that their child's troubles are all Pandas.

So I discussed my daughter's dx of Pandas with my regular pediatrician. He sympathized and told me he would never treat this because this is not in any literature, not studied and he would not want a kid to get liver damage, etc. He specifically mentioned he would not want to get sued!!! So he refused to treat my daughter only to protect his own backside!! Thank god for Dr. Schulman, who is treating me daughter. I wanted to know if the DNAse B only is strep antibodies or other autoimmune diseases too? Is it possible to have elevated DNAse B and NOT have Pandas???? THANKS

my dd11 is getting 400mg/day at 90 lbs. Her doctor recommends 10mg per kg. And tapering after no longer seeing improvement.

With a probable mistaken dx of Aspergers she has spent over $100,000.00 for different therapies, meds, special school, mentors etc etc. If this IS Pandas, what a pity on all those wasted years and money. She never even considered a physical cause. (no internet due to principles)

We are not yet looking into IVIG. She gave us a clinical trial of abx first. We will take it from there.

Hi I have a cousin whose child has been diagnosed with Aspergers at age 9 and Type 1 Diabetes at age 15. Recently I was talking to her, and told her about my daughters dx of Pandas and how happy I am that she is not crazy, just sick etc etc... and she asked me to read her the symptoms of Pandas. So I read her to checklist from Dr. K, and with every symptom she was jumping more. Her son has had significant amounts of strep as a child. He has tics, movements he cannot control, OCD and anxiety that is taking over his life, frequent urination and many more. I told her to RUN to take the bloodwork and she is now awaiting results. Questions: Is it possible to have Pandas for many many years (12!!) and still be helped significantly? Is age 16 too late for treatment (IVIG)? Could Pandas or high strep levels cause Diabetes? Is it possible that the bloods with come back OK and he could still have Pandas? This cousin is at her wits end with this child, and does not have internet access. Please, any input here would be greatly appreciated.

By the way, she also mentioned that she will be giving an interview about Pandas to Parents Magazine. Keep your eyes open.

Hi all, So I finally got to see Dr. Schulman. I was very impressed with her. She gave me one hour of her time and really listened to me. She says there is no doubt in her mind that this is Pandas, and is treating appropriately. Two very interesting things she told me: 1) There is a genetic component to Pandas; the majority of Pandas patients are of Jewish or Irish descent. Do you find this to be true? I am Jewish. 2) She gets IVIG paid for by insurance, without a fight, by doing it in a Cancer Outpatient Center, and billing it as "Post Infection Encephalitis" Works every time. If any of you don't have the 15 grand, this might be the route to go. Thanks for all your support!!

My son was on it and I never saw neurpsych symptoms although my doctor did warn me about them.

Thanks all, We get to see Dr. Schulman next Wednesday. She has treated over 100 kids with mild/moderate Pandas, so we are starting there. Although I've got to say, we are seeing significant differences with Omega 3 and Vitamin D supplements. My daughter has been and unusually healthy child. She never had the typical childhood illness, in the traditional fashion. Looks like it affected her elsewhere...... I will keep you all updated.

We have diabetes in the family too. I find this very interesting... I have a different take on this. The liver, which supports glucose function, in compromised with an attack of Strep in the body. Perhaps because of its trying to fight the strep the blood levels go whammy????

I am sitting here and almost crying while reading this. THIS was the very first symptom we realized in our daughter. We went through so so much within the last 5(!) years trying to find a fitting diagnosis for our daughter. She has been suffering from mild OCD and anxiety for several years now! We've been through OT's Neuropsychological evaluation ($$$$) CBT, and the poor kid has such low self esteem, no friends and a massive buildup of negative emotions. When I realized that Pandas ties in all her symptoms so perfectly, I immediately started her on Fish oil and Vitamin D while awaiting a Dr. appointment. Her blood titers and antibodies did come back high, and I am now awaiting an appointment to a local Pandas specialist. Slow response time, her biggy symptom wasn't on any list, and now I feel that all of these problems are only STREP. Hopefully the abx will help her. Thanks for posting this!!!

Now I am really wondering.... I am quite sure that my daughter has Pandas based on the handwriting changes and anxiety and OCD(just heard about all this recently) My son has tics right before he gets a strep. My first cousin has tics also (referred to a neurologist) My first cousin has a son with slight autism spectrum disorder. My uncle, I never knew what was really wrong with him, he was significantly "strange" ever since I knew him and was recently dx with Parkinsons. My grandmother ( his mother ) had Parkinsons too. Could this be one long story ???????? Condolences regarding you dad.

Let me clarify. My daughter DID NOT have a strep for the last 3 years. Interestingly my ds13 always has tics prior to a strep infection and it disappears with abx. We have put my daughter on Omega 3 and Vitamin D and have seen dramatic difference. But, not enough for me to be perfectly satisfied yet. I could say she is in asymptomatic now, but the slight ocd with handwashing still persists. Also the social anxiety. Could it be that her strep levels were higher and the omega 3 and vit d helped bring it down a bit?

Thanks for all the replies I just got the preliminary results and the strep ASO is 301. The AntiDnase is over 300 too. Her last documented strep was 3 years ago. (She was observed to have significant improved behavior following the abx then, unfortunately I did not know about Pandas/ocd relationship until 3 wks ago and just decided to retest) Do these numbers indicate Pandas? My pediatrician does not quite believe in Pandas; I am bullying him to prescribe abx (zithromax) and will take it from there I do live near Dr. Susan Schulman. I was just gathering info from Dr. K. His website helped me tons.

Hi We are suspecting Pandas in my dd11. We did some bloodwork on her, and are awaiting results. Although her behaviour is not as severe as some of the cases I have read about here, She is not doing well socially at all. ( anxiety OCD, immaturity etc.) She is doing OK academically. My pediatrician sympathized with me and drew blood as recommended by Dr. K. Awaiting results. Pediatrician is clueless about this. Can anyone tell me what the results should be?? (excuse my sheer ignorance) And where do we go from here? Before I bumped into Pandas, someone recommended I see a specific chiropractor. On the consult visit, he said that she has significant brain stem pressure and would do manipulation to help the body self heal. Did anyone here every do something like this or similar, with positive results?? Thanks all. I need all the help I can get.