Gibster

Just wanted to give you guys a heads up. My son was diagnosed with PANDAs in 2006 (Dr. Latimer) and has been successfully treated since then with various medications. Currently he is being successfully treated with clonidine (he is a sudden tic onset). In 2006 we were all covered under my employer health insurance. In 2008 I decided to stay home and my husband started a consulting business. At that time we secured our own health insurance -- going through the entire underwriting process with no problems -- but were paying $1400 a month. In 2009 we decided to figure out a cheaper way to insure our family, went to underwriting again. This time the insurer did a rider to exclude our son's PANDAs including doctor visits, medication, etc. -- basically everything related to his condition. We were ok with that and in addition it cut our costs down to $700/month. Since his clonidine is only $15 a month and he doesn't require more than 1 visit to the neurologist a year this saved our family quite a bit every month even paying out of pocket. Fast forward to March 2010. Our current insurer notified us that they were going out of business and we had 30-45 days to secure new coverage. We have searched in vain to get new insurance. Not only for our son with PANDAs but for the rest of the family. We have currently been denied by three companies due to son's PANDAs. Each have reviewed his medical records and gave us some bogus reason (Tourette's, anxiety, ADD -- clearly they are diagnosing him with these things since no one in the medical community has!). The biggest change from before is that now they are denying our entire family instead of excluding just his condition. We have 1 more insurance company to work with before we have to toss him into the uninsurable pool by himself while we all trot off into regular insurance. At what cost we don't know. I can give you more details if you need (yes, the pre-exisiting kids coverage is coming in Sept as long as you don't have a two month gap in your insurance!) but I just wanted you all to be aware of what is going on out there if you find yourself trying to buy insurance.

Hi. We are in Denver also. We moved here 2 years ago from DC where Dr. Latimer successfully diagnosed and treated our son for PANDAS. For us the beginning was so easy! Then we moved to Denver........ I have yet to find a doctor willing to acknowledge PANDAs out here. It has been frustrating. We lucked into a family practice physician who was willing to do blood work and basically give me any medication I thought my son needed. Then my son had a massive flareup and we were on the hunt for something more than our family physician could provide, including answers. Totally struck out. Met with various neurologists at Children's and even 1 at the Children's outpost in Parker. We first went to Children's last January (of 2009) and I could tell just by how the doctor entered the office she didn't "believe" in PANDAs. They had just had a symposium with the neurologists and infection disease experts about various issues, including PANDAs, and concluded there isn't a scientific basis for PANDAS. Totally whatever. That said, the doctors were very nice, could see that my son was in trouble and were happy to work with us on doing something for him quickly. After years of antibiotic therapy and removal of his tonsils and being poked and prodded we decided to try clonidine. My son's PANDA is mostly tic/anxiety rather than OCD. For him the clonidine works. In the end my questions about his strep issues were never answered. We did check his heart valves to make sure the strep wasn't affecting those but other than that we have been focused on treating the symptoms rather than the cause -- I think that is the best we can do here in Denver.

Hi Karen. I was the mom who originally posted about Dr. Latimer. I am so glad you had questions answered and are on a treatment path. Good luck! Morna (now in Colorado and missing Dr. Latimer)

We are in Colorado. He did fine on Azith last spring that is why we went with it again a few weeks ago. Just didn't work at all. He was on it for 10 days (after 10 days of Amoxicillin) when we finally got to the neurologist. The ped. rheumatologist is a great idea.

Hi Gibster, Hmmmm...well there are actually other reasons to treat strep carriers. Two that I can think of off hand are: 1) the strep carrier is making other family members sick (esp. if they have PANDAS, ARF, repeated strep infections) 2) the strep carrier has PANDAS (oops! forgot this doc is a "non-believer" ) The assumption that the carrier state is benign is starting to be questioned by some strep experts. The medical community doesn't really understand why some people are strep carriers and what that impact might have. Our dd who has PANDAS would problably be considered a "strep carrier" by some. Her FEVER/onset of behavior changes was 1/08 and she cultured positive 2 mo. later. Her sister is also a strep carrier. I think it is a big mistake to assume that strep carriers don't get PANDAS and that the strep carrier state is inherently benign. You might find this article interesting (including the comment about strep carriers/OCD/tourettes) http://www.umdnj.edu/umcweb/marketing_and_...fall2005/11.htm Also, I'm curious....what happened to your son on the Azith? How long was he on it? I know you said his symptoms got worse on it, any deatails? I bummed it didn't help. I am not going to just dismiss his original PANDAs diagnosis because we ran into a non-believer doctor. But at this time, he has never had strep throat and we have had only 2 cases of strep in the family (one throat, one anal) in the 8 years of having kids. He doesn't seem to give it to his siblings......nor does anyone else give it to them. How weird is that? But you do raise a good question which I have no answer to and am exploring more. If the strep is causing his tics (which I believe) then is there damage being done? Is there brain inflammation? What are the adverse affects of not treating his strep and just treating his tic/insomnia/attention issues? I have no answers to that. But am open to hearing what anyone has to say. He was treated with Azith last spring. Usually how this goes with him is that he starts with the tic, we get antibiotics and the tic goes away within a few days. Last strep season he was on a daily dose of amox. He got the tic while on amox so we did Azith and it went away, returned to the daily dose of Amox. In late spring 08 he once again began to tic through the amox. At that time we met with an ENT to discuss tonsillectomy and he stopped ticing on his own (strep season ended). This winter when the tic showed up again we started on the amox with no change (full 10 day course). Then we did the Azith without improvement. I don't know if it was because of the Azith or not but during his Azith round his symptoms worsened. They did not worsen during the amox, it just didn't help. During the Azith cycle his tic became much more frequent and much more pronounced. He was in almost a constant state of ticing. His insomnia worsened and the attention issue was out of control.

Sure, she said that strep could attack the cardiac valves (like rheumatic fever) or there could actually be "strep vegetation" hanging off the valve. Typically people with these issues have other symptoms like high fever -- but she just wants to cover the basis. She said that the only reason to treat a strep carrier with antibiotics is if the heart was involved also. He is going in next month for the echo.

Just wanted to update you guys post neurologist appointment. Well, after getting a PANDAs diagnosis easily 2+ years ago we ran into a neurologist who said "I don't believe in PANDAs." Tad shocked, tad disheartened BUT she was really good at evaluating my son. She spent a lot of time with us going through the whole history and what has worked/hasn't worked in the past. In addition, after having him on azith, his symptoms were only getting worse. She she wants to take a new approach with clonidine, heart ultrasound (to rule out the strep there) and treating the tic/separation anxiety/attention issues rather than trying to get rid of the strep. We are not 100% sure that this is the right approach. What we are sure of is that the tic is affecting him emotionally and socially so we have to do something now. So we are starting him on the clonidine, praying for a miracle but keeping our options open.

Thank you all! We switched him to Azith yesterday and have an appointment next Friday with a neurologist. So I guess we will go from there but I will definitely discuss the longer course of antibiotics. Do you usually keep them on just through strep season or is that all year. We have had the other 3 kids and ourselves checked and no one seems to be a carrier. The only time any of the kids has actually had strep is on case of the baby with anal strep and then once my dd had actual strep throat but other than that we haven't gotten any positives in the family. Looking back -- I would have skipped getting the tonsils out. He had a horrible recovery and it was hard on him. Now we are at the same place so not really sure it was all worth it. Diana I got your message will shoot you my e-mail. Thanks again.

I just stumbled upon you guys and have been reading this forum since I found you -- with relief and with angst. My son was diagnosed with PANDAS by neurologist Dr. Elizabeth Latimer (Bethesda, MD) in the fall of 2006. During a trip abroad he woke up one morning shrugging his shoulders. After cutting all the tags out of his shirts, changing laundry detergent and telling him to knock it off (about 1000 times) we took him to our pediatrician. He said this was out of his league, did a throat culture (negative) and blood work then sent us on to Dr. Latimer. Based on his titers and her neuro evaluation she said it was PANDAs. Something I had never heard of. We started him on a course of antibiotics and within days the tic was gone. Through the spring of 2007 we put him on and off the antibiotics when the tic would reemerge. Each time the antibiotics would clear it up. In the mean time we took him to the allergist to see if there was an allergy trigger. Good news, not a single allergy. She did an MRI of his head and saw a sinus infection. We had hope that maybe the strep was hiding out in there. More antibiotics. Starting in the fall of 2007 he was on and off the antibiotics so regularly that we started a prophylaxis dose of amoxicillin which seemed to control the tic until the spring of 2008 when he started to tic through the meds. Of course at this time we 1.)moved and 2.)lost our pediatrician in a car accident. I felt like my whole basis of knowledge about my son was gone. We found a new doctor in Colorado, met with him, did blood work and referred us to an ENT at Children's here in Denver. ENT drew blood, reviewed history (including not a single positive throat culture EVER), MRI (felt there never was a sinus infection) and wanted to do another throat culture since he felt that a lot of times peds don't culture in the right place. Well, true to form the titers were high and the throat was negative. He advised removing tonsils. We did that in July 2008 and had high hopes that this could be the answer. Well it wasn't. Here we are, back again with a humming, ADD, anxious child who can't stop with the tic. I took him back in to the ped last Friday for a repeat blood draw and again he has high titers. We put him on antibiotics to help with the tic and attention (really impacts him at school) with a referral to a neurologist here in Denver. I can give you more detail if needed but I am not sure really what to do from here. We will see the neurologist but do you think we should see an infectious disease person to see if he has strep hiding out somewhere? He actually is rarely sick. Before getting the tic he doesn't present with a cold or a sore throat or anything to tell us that he is "sick." Rather he just wakes up a different child one morning. While the antibiotics (amoxicillin) usually works for him this time we have to change it because it just isn't knocking it out. Has anyone had a child where they can't find the strep? Does that really matter?