PANDAS mom in Nebraska

Hello! My daughter was dx with PANDAS last fall. I had been working closely with Dr. Kobayashi, an immunologist in Omaha who has been awesome. He referred us to a neurologist to have a "neurologist on board" in case we needed one for future use. My daughter was referred in January, but not seen until April (At which time she had been doing great). The neurologist we saw told me that if this were her daughter she would NEVER treat her with steroid burst or antibiotics and told me that she didn't know the doctor who dx (dr. K in Chicago), but there was not a doctor around here that believes in PANDAS. She said my daughter just had typical OCD and should be taken to a psychiatrist ASAP. (Again despite being great with no psych meds). A long story short, we did not have mental health coverage at the time on our independent policy. THe neurologist ends up coding the visit mental health so we are being charged $514 out of pocket for a neuro consult in which we were referred to get by the immunologist. I have fought with the neurologist to change the code of the visit which she won't. The immunologist is going to dictate a letter to go along with my appeal. But what other information would be good to include to prove the neuro aspect of PANDAS to go in my appeal. I am fired up!!

My daughter had chix pox vaccine and then tics started and OCD/Pandas. My daughter had a severe exacerbation 2 weeks after getting her flu/H1N1 injections in November. I recently did a phone consult with Dr. K in Chicago, who said that this occurs, and that she should avoid immunizations in the first year of treatment to "rest" this process.

How much does he charge for this? He charged $350. We had to send him the check and a narrative history of her symptoms. The great thing now is, now that we are "established" with him, we or my pediatrician are open to call or email him whenever about specific questions or concerns. What an awesome support!! He was absolutley impressive on the phone, you can tell how compassionate he is about PANDAS.

Hello! Just wanted to let all of the parents new to PANDAS and this site, that we had a phone consult with Dr. K yesterday. I am newer to PANDAS as my daughter was diagnosed in September with her 1st episode. My pediatrician had heard of PANDAS and was willing to do something, but basically didn't want to "blindly" do things without some sort of guidlines. Thanks to this site and getting in touch with a local mom, I set up a phone consult with Dr. K. He was SO awesome and thorough with us. Within 24-36 hours he is going to email us his detailed recommendations to follow for the next year. This is VERY helpful as I can give this to our pediatrician to follow. I was SO happy to get an "expert" opinion without driving across the country, and also so happy to finally have a specific "plan" for here on out. He also said that my pediatrician or I can call or email him anytime here on out with questions or concerns. I would highly recommend this to anyone looking for a "starting point" in treating their PANDAS child. Wish us luck...I'm hoping we can get on top of this sooner than later!! His contact info can be found on his website at www.webpediatrics.com.

My pediatrician believed it was PANDAS, but was still hesitant to treat when her labs and throat cultures were negative a bit later after the initial diagnosis. I just this week contacted Dr. K in Chicago (per suggestions from other PANDAS parents on here) to set up a phone consult. I also gave my pediatrician a list of 4 doctors and all of their contacts so she could call someone for more advice for a treatment plan. She ended up contacting Dr. K and finally started my daughter on a month long full strength Augmentin dose. I am still going to do the phone consult with him as I've heard he will confirm the diagnosis if needed, and type up some guidlines for your pediatrician. This is what my pediatrician needed. She is willing to do it, but did not want to go in blindly. Its worth a try! Dr. K is on webpediatrics.com

I am new to this forum and have a question for any "seasoned" PANDAS parents. My daughter McKenna who is now 4 1/2, had the sudden OCD behaviors start in July (2 months after a fever illness in May). We self referred her to a local behavioral psychologist who was awesome, and who thought she just had OCD. As I started doing my research, and read about PANDAS, I requested that she get tested. In September she was diagnosed, with a positive throat culture and elevated strep titers (one was normal, and one was 7 times above normal). She was put on 10 days of antibiotics (Amoxicillin). By the end, of 2 weeks, all behaviors were GONE!! She was set up for a strep retest 4 weeks post treatment, and the week prior some behaviors resurfaced. At her retest, sure enough she was still positive again. PANDAS full fledged resurfaced as she was then put on augmentin x10 days. Behaviors again vanished about a week past the end of the 10 day antibiotic. Great! Except 2 weeks later, behaviors resurfaced and have been very prevalent for the last 5-6 weeks. We have taken her in twice (Once in the middle of November, and once this week). Both times, her throat cultures came back negative. This week my pediatrician decided to recheck her ASO and anti-Dnase titer. Both came back within normal range (her numbers were at the very high end of normal). The behaviors continue. SO....at this point, do I just accept that she now has full blown OCD, or is this still PANDAS related? For the people that have taken their kids to pediatric neurologists, do they help when strep has now been ruled out? I don't know where to go from here, and am feeling really discouraged as I thought those titers would be elevated with what we are seeing behavior wise. Please advise!!!