JoyBop

I'm so bummed. Our insurance co just rejected out request to see Dr. T. based on our local pedi neuro that told them an in network doc should suffice. Nice! Coming from a guy who told my PCP that he was waiting to see how he responds to abx before giving us the office notes. So who pays put of pocket for PANDAS docs and is it worth it? How often do you gave to travel to see them? Do you recommend it if our PCP us willing to try anything for us but has no clue on how to treat.

I feel the same way you do!! Please tell us ehat your decision was about IVIG.

Insurance most likely won't cover as there they only have to cover "standard of care" procedures and insurances. Still, we can try! Also, doctors can submit claims til their blue in the face and no insurance company can do anything other than reject them. My guess is that the patient signed a waiver that they were responsible for all charges Re this uncovered service.

Thanks for mentioning the study. We would live to but are excluded bc DS has already started CBT and he was on Prozac fir 5 weeks and just came off it two weeks ago. Thanks to born of you for sharing your experiences with me.

Thanks Megan. Glad I was able to help. We haven't tested him for Lyme yet but had to give the preventative dose so we just switched him. Please tell me more about this Dr k. Where can we find his protocols? Thanks for mentioning it.

That doesn't make any sense. I work with the health insurance business. Doctors don't ask patients to promise not to try to collect from insurance companies. Forgive me if in misunderstanding what you said. The patient may be asked to sign an ABN (an advance beneficiary notice or waiver of liability) that states you are personally responsible for an "uncovered service" But the doctors don't ask you not to "try to recoup uncovered expenses." There's something fishy about that story. I'm sure most insurance cos wouldn't cover any "unproven" procedures but its our right as consumers to ask and appeal when they do no.

Has anyone seen a slower onset of returned PANDAS symptoms? DS had a raging pos strep culture 2 weeks ago. About 3 weeks ago we started seeing some revisited behaviors that we saw with her initial onset. To be honest I thought they were a gradual progression the last time as well but perhaps that's why it took us so long to figure it all out. She's been on amix for 2 weeks but behaviors are getting worse not better. It's still only mild compared to last time but she had strep for many months as we didn't figure it out. DSs symptoms come on fast and furious and this we got him diagnosed much easier. Is it possible for PANDA symptoms to gradually progress over time ? I'm so confused. Should we give it more time? Or would you switch abx at this point? Taking them both for another culture today to play it safe.

My son is 7 and 68 lbs. he was given Cephalexin 500 mg BID for an active strep infection. we got him the 250 mg capsules bc they are smaller and easier to swallow and he was taking 2 caps BID. we didn't see a bug improvement the first week then we had to switch to Ceftin anyway after finding a tick on him. Hope that helps, given out kids are the same weight!

You should also be aware that hospitals set their own rates. The smaller community hospitals fees are often higher than large urban areas. They set their own fees and then negotiate fees with insurance companies. Insurance cos get a discounted rate but often uncovered services are left in full to the patient. I hate to say it, but you do have to shop around. Does this Dr. Have any affiliation with other hospitals to compare price? You could also ask to negotiate a better price and a payment schedule. You should also appeal the decision and ask your insurance company to cover it. I have often gotten things paid for that were initially uncovered or our if network. While it is true that IVIG is not guaranteed it is an option. While you are waiting to make that decision I would be leaving no stone unturned to make it as affordable as possible or better yet...covered.

I would question the advice you were given. First, you don't know for sure how long the tick was there. Second, you should get a treatment to prevent the infection in the first place. Our doc always gives us antibiotic after a bite. We never send out the tic as it costs several hundreds of dollars and takes weeks. By that time its irrelevant bc we have already received the treatment. If you catch the bite in the first 48 hours and treat you can avoid a bigger problem later.

I was just searching the web and came across this fantastic site. It is in Australia but I have no idea how close it may be to Melbourne. It looks like they have a very comprehensive approach with PANDAS http://www.adhd.com.au/PANDAS.htm

I've often wondered the same thing myself. My DS used to be a fish and hopped in the shower with his dad everyday. We used to have to fight him to get out of the tub. Now I have to bribe him every two weeks. He is normally very insightful and can explain why or why not but he just won't budge and won't tell me why when it comes to bathing. Sometimes he will wear the same short for a week while other times he will change his clothes 7 x a day.

I was able to get DD an appt with Dr. K at MGH( in Mass) but not DS. The journey began with a call to Dr. Gellers office. He is not taking any new patients (PANDAS pts included) but the staff gave me a list of MA docs treating PANDAS. None of them were willing to accept new patients excect Dr. K who is only willing to see PANDAS pts with specific ENT problems. DS qualifies as she has huge tonsils. She has not been officially diagnosed, but we highly suspect she has PANDAS. She is currently being treated for an asymptomatic strep infection. Does anyone have any experience with Dr. K? I can not seem to find much about anyone's personal experience. We are going to take DS to Dr. T in NJ. Im hoping between the two of them that we will get somewhere.

The rapid came back negative. We didn't take a culture because the lab was already closed for the day so we are going back in Monday morning for a swab and follow up. Now his voice is getting hoarse which is making me think reflux. Anyone hear of reflux from taking Ceftin? He's also taking probiotics.

Our doctors have all recommended a very low dose (either Clonadine or Intuniv) to help with the rages and intense motoric hyperactivity that sabotages him in school. Our psychiatrist, nuerologist and psychologist have all said tgeyve seen good results for PANDAS pts. We haven't given it to him yet as we want to wait and see how much progress he makes with antibiotics yet. I'm curious to see how other PANDAS pts do on these drugs as well. We did decide that if we proceed it will prob be .5 tablet of 0.1 mg 2x per day.

I'm not sure I understand what you mean by are they treated to prevent Lyme. He is on Ceftin since he had a tick bite last weekend so yes, we are treating to prevent Lyme. But did you mean prevent Lyme on an ongoing basis? Is two weeks long enough to wait to reswab or should be be considering a change in antibiotic?

Medicine is as much an art as it is a science. The trick is find the right one that listens to you, communicates well, and trusts your instincts as parents. Good doctor/patient relationships are hard to come by. If one doesn't listen to you, try a different one. I also agree with 4Nikki that often nothing can take the place of a face to face appointment. What looks like a duck, walks like a duck and talks like a duck is not necessarily a duck. (As all of us in this forum can testify to.) But with all that said, it's great to do your own research and give these ideas to your doctor to help sort them out or refer you to someone else who has greater expertise. Advocating for these kids are a full time job and I know I fully intend to use any and all information and clues I can to put the pieces together. Thank goodness for the good doctors that listen and help! And for those that dont? Time to move on!

I was told that the $200 upfront was just the cost of the "kit". Actually, there are two different kits for $99 each if I understood correctly. The cost of the lab work is dependent on your insurance coverage. Of course, you could clear coverage with your insurance company prior to paying for the kits. I am still working on getting coverage to see the doctor in the first place. I will pay for it if I have to, but its worth a try. Not sure I would do any genetic testing at this point, but we are new to all of this. Im sure if we are still struggling years later we would try just about anything.

I am perplexed. Can anyone give me their thoughts on this? My 7 year old had an active strep infection and he began in Keflex 2 weeks ago. About a week into treatment he had an embedded tick with nasty rash so we switched him to Ceftin. We truly see an enormous improvement if OCD, anxiety and quirky behavior. He is left with hyper activity and some obsessive thoughts but over all greatly improved. After two weeks of treatment and great resolution in his PANDAS symptoms he is now complaining of a bad sure throat and his glands are still somewhat swollen. What should we do? Culture him again? Switch antibiotics? Could it still be active after 2 weeks if 500mg 2x a day? Any thoughts would be appreciated. Still do not have a PANDAS dr yet but trying to coordinate the trip out of state.

I was told by Dr. Ts office that the saliva kit is $200 but the lab costs thousands if insurance does not cover. I know my insurance will not cover but my doctors wrote letters today to see if they will cover an out of network provider so that we may get reimbursed for seeing Dr T. Has anyone been successful with getting reimbursed for an out of state doctor

I have spoken with a few PANDAS specialists as well as some pediatric neurologists that have no experience with PANDAS and they all mention genetic testing. Can those of you who have had this done tell me what the benefit is? Is there any specific treatment that can come out of genetic testing? We know that there are autoimmune issues on both sides of our family. I am hesitant to pay thousands of dollars for information that will not result in treatment. Who has done it, what did it cost, and how did it help? If you refuse it, do the doctors push the issue? Thanks in advance.

I am wondering the same thing myself. We saw a new psychologist that has worked with many PANDAS patients and he said that Intuniv has been very helpful for his patients, although did not recommend we start anything new at this time as we are still getting the Prozac out and the antibiotic in. For those of you that treat with ibuprofen, have you ever seen evidence in blood labs of inflammation? We checked our sons SED rate and it was normal. Would ibuprofen still be recommended for symptoms?

In sorry I didn't clarify. My son had a steep infection in December when all of this started and still had one when we figured out he had PANDAS just about a week ago. So there is no question that we are thinking its PANDAS and not just OCD. But I do find myself playing the guessing game because although he has had some resolution in symptoms with antibiotics there still isn't a dramatic change. I realize this could take some time. My son has always has a bit of anxiety and mildly obsessive thoughts but there was a day that he just woke up and was a different child with onset of very disturbing personality and behavioral changes. I am still trying to understand the differences in behaviors found in regular OCD vs PANDAS so that I can better prepare his school/camp staff. Many of them are adept at dealing with OCD but I am needing to explain to them that this is more/different I am also curious is seeing how many different behavioral manifestations we are all seeing in our children across the board. I am working on getting in to see a PANDAS specialist but I am also aware that this could take some serious time and money to happen. In the meantime thank goodness I have found this site to get us through the first steps.

I'm interested in hearing what behaviors you all see when your children are flaring, and particularly those behaviors that are not typically found in "non-PANDAS" OCD. My 7 YO has the most bizarre, hyperactive and immature behavior at times, but then at other times if the day he seems perfectly fine. He speaks to me in baby talk and is obsessed with making gas sounds with any part if his body ( armpit, mouth sounds, ect) furthermore he is compulsed to smell anyone else's gas. (So sorry!) he chews holes through his clothing, gnaws on anything from Legos to any small object he can get his mouth on. He also swallows these small objects. He takes all his clothes off the second he gets home and changes his clothes constantly. He refuses to bath. He covers any scratches or bruises in his body with markers. He has complete meltdowns and fits if rage very easily and most commonly due to conflict with siblings. He has temper tantrums if he doesn't get his way, is impossible to get him to focus on homework or chores and his ability to write and draw has decreased several grade levels. He cant sut still for a minute at school and thinks everyone is put to get him. He is constantly drumming on things with his hands or pencil, makes clicking noises with his mouth and has a growing number of irrational fears. Most recently he fears that we won't love him when he gets taken to jail. He's afraid of gum, stickers, feathers, vomit, diarrhea and embarrassing himself. He has many obsessive thoughts and tends to be a checker. I figure those or more of the normal ocd symptoms. I'm looking forward to seeing if your kiddos have similar issues and if you think those additional behaviors I've listed are in line with PANDAS. Prior to December he was a very charming and sweet, affectionate little guy that could definitely get revved up but was not the quirky, irritable, explosive boy we are now dealing with. I love him to pieces but I am so exhausted and am getting a little depressed. Please share your LOs behavioral symptoms that are above and beyond your typical OCD type rituals and behaviors. Also how do you handle an out of control child? I'm having a very difficult time figuring out when to let it go and when to crack down. Nothing I try seems to help.

Our psychiatrist has recommended that we see Peggy Chapman, NP in Hingham Ma based on another patient that has been helped by her. Has anyone seen her? Has she been helpful? Does anyone else see an NP for PANDAS?