KaraM

My thought would be either - since it's not a strep test.... Anyone know for sure? Thanks, Kara

I have a couple of colleauges as well who have grown children with OCD/Tics and whom they think could possibly have PANDAS (given their health history and onset of symptoms as children). During my daughter's first visit with Dr. Bouboulis I asked about whether they could be helped. He said yes and that he does work with adults, too. Kara

Hi, I am a member of another support group on OCD and Parenting. The have a section on their site for articles, studies and other files. It's under the "files" section (upper left hand corner). The article I've metioned a few times about "OCD and the Role of School Personnel" can be found there as well as lots of other articles and studies on OCD and other MH disorders - even a few things on PANDAS (alhtough not all the most current). The link for the OCD and Parenting site is: http://health.groups.yahoo.com/group/ocdandparenting/ Here is a direct link to the "files" section on the site. I'm not sure if you have to be a member or not to access it (so if you have trouble that may be why) http://health.groups.yahoo.com/group/ocdandparenting/files/ Just sharing in case any of the info may be helpful to anyone. Kara

PM me wiwth your email address and I'll send you this article. Maybe you will find it helpful. Even though it's not PANDAS specific (it does mention PANDAS). It really addresse what OCD is, how it may present at school and what types of accomodations can be made. Kara

Amazing. On a update note, I can understand why you might not want to continue doing it weekly. Could you go to monthly? Feb seems to long to wait to hear again. Also if you notice any other changes, please let us know. Thanks, Kara

I'm asking this on behalf of someone else whose child was recently diagnosed with OCD and who has an appointment coming up with a psychiatrist. She also asked if they are typcially open to PANDAS. I didn't have much experience to offer her. Any thoughts? I imagine it's individual - just like with pediatricians. She's in the Houston area, so if anyone has recommendations for psychiatrists or other docs, please let me know. Hopefully she'll migrate over here as she learns more about PANDAS....in the meantime, I'm trying to offer any support I can. Thanks, Kara

Ditto for us: We had an order for an ASO/Anti D NAse B from our pediatrician (that we basically demanded), but no doctor order for the Cunningham Test. We just brought the Cunnigham kit with us and showed the paperwork. The plebotomist drew the blood for the ASO/Anti DNAse then just continued drawing into the Cunningham tubes for that test. I then took the box to a Fed Ex depot and shipped it out. The ASO/Anti DNase B results went to the doctor (and were elevated, hah!). However, I do know someone that just brought the kit to a local phlebotomy lab without any doctor order. The phlebotomist questioned whether they could leave with the blood, but checked with her supervisor and all was fine. I agree, it's worth a call to the lab so you don't waste a trip. Kara

Thank goodness. And thank you for letting us know how things are. I've been thinking of you all day! Kara

Cassi, I wish I could be there to help you through this. I see you have gotten a lot of advice, some of it conflicting. I'm not sure how much I can add. I don't have the experience with the pscyh med or the steroids - so I don't feel I can offer much up there. I know you did the strep testing and the results were negative, so imagine it would be difficult to get the doctor to prescribe the abx. However, part of the argument we used that finally convinced our doc to prescribe the first round of antibiotics (before any strep or Cunningham test results) was that another child in her class had strep and we wanted to rule PANDAS out by seeing if abx had an effect before we put her on an SSRI. Maybe that argument will work. Another thought is the Olive Leaf Extract route (see Stefanie's posts about jumping ship)- although I don't know how quickly that will work and it sounds like she needs relief fast. Maybe some of the others could chime in about how quickly a steroid burst would help her? Haven't some of you had your kids get poison ivy just so you could get the steroid burst?? (I don't know if this is true and am not recommending this necessarily - If it is true, I am wondering how it worked out for people) My heart aches for you, Cassie. I know I'm one of the people that got you pointed in this direction and hate that I don't have more or better advice. In the end, remember, you know your child best. Follow your heart. I will keep you and your daughter in my thoughts and prayers. Kara

Glad you're ok. If it's any comfort, you are not alone. I react the same way you do whenever any of us gets a soar throat. I used to worry about eye rolling at the doctor's - but no more - I'm over that. I also analyze every move my daughter makes - even though she has been relatively stable for the last couple of months. I also try to appreciate all of the normal moments now - not worrying about wearing my shoes into her room or sitting on her bed or pouring milk from the wrong bottle... It's the little things in life that make us happy, isn't it...

Theoretically, according to the therapists and books, she should suffer consequences. I know this is hard and I can't say we were super successful with it, but we would try to have the conversation when my dd was not having an episode and tell her that if she hurt anyone or anything, she would have to make reparation in some way. She would normally feel terrible after something happened anyway...

But don't give up hope...remember 30-40% of PANDAS kids don't have elevated titers. Wait for the Cunningham test. Kara

Sound very similar to my dd. She was 189 and just one of the anti-neuronal (can't remember which one) was slightly above normal. I never quite understood what the significance of the anti-neuronal tests were - above my head...the Cam Kinase seemed to me to be the biggest marker.

Dr. B put my dd8 on 350 for a month then down to 200 mg. of Zithro. She's about 60lbs. But again, she did not do the steroids and she had already been responding to the 350 for 5 days then 175 mg dose the pediatrician had prescribed to her a couple of months before. So I think their cases are a little different...

We got results just from the abx - we had started them a couple of months before seeing Dr. B - he may have put her on them otherwise. Hopefully, by the time the steroids wear off, the antibiotics will be doing their trick. It's amazing, slowly but surely the fears slip away...however, some ERP (exposure and response prevention) can help you get there faster. Have you tried any ERP? Have her rank those fears from most to least. Pick one of the lower ones and slowly try to overcome it. For example, if she won't touch a door handle, see if she can touch some place on the door close to it. Get closer and closer each time. Then touch it quickly. Then touch it for a second...etc. There are some books for kids - like Up and Down the Worry Hill (may be a little young for her) or the workbook "What to do when your brain gets stuck" that can help with the ERP. Kara

Thanks. I may buy it and bring it with us to Dr. B in a couple of weeks. I feel like I need his apporoval to add it to the regimen.

I was just at our local health food store and asked what he recommended for inflammation other than/in addition to fish oil. He did mention the tumeric and ginger, but then brought out this homeopathic rememdy. I didn't buy it because I wanted to check to see if anyone had tried something like this. Does anyone have any words of wisdom/caution. Thanks, Kara

HI Tami, Have you called Dr. B. to ask his recommendation? We see him also. We have not had IVIG yet, but think I remember him describing to us that with IVIG he usually sees things go one of two ways. Either one is enough or, if there isn't much improvement a second is needed (maybe 4 weeks later???). I know how you feel about wanting a sympathetic pediatrician, but maybe having Dr. N or Dr. T on your team in addition to Dr. B would make sense. Or how about calling them and asking if they know of any pediatricians in the area that have been cooperative/understanding with other patients of theirs who can supplement the care of Dr. B. My impression from others on this board is that Dr. T is just an incredibly kind and understanding human being. I don't get the impression there is competition for patients or anything like that. So maybe he'd be willing to give some names if he knows any... Just some thoughts. Good luck. Kara

My long lost sister!!!

Hi Lisa, Every child responds differently. We never did the steroids. But my dd started responding slowly around day 11 to her first round of a 14 day dose of Omnicef. She was able to do some ERP and get over a few fears. Her rages decreased slightly, too. We went from days that we ranked 4 or 5 (5 being living h###), to days that were around 3 - 3.5s. However, a month later she went on a higher dose of Zithromax and started responding very quickly. I would even say within a matter of hours. I gave her the medicine at 10am at school, she came home, played by herself (hadn't done that in ages) and then fell asleep in my lap. I literally looked up on line after to see if drowsiness was a side effect. Each day she got better and better. Within a few days we were down to 3s and after a couple of weeks down to 2s. Now 5 months later, a 1 is a bad day. I suggest making some sort of list or chart of the symptoms your child has been experiencing and rank how severe they are each day. Then you can really track if there is any improvement. I can email you my excel spreadsheet with the chart if you want - but I admit our ranking system was very subjective. Buster's charting system seemed more objective. Don't get discouraged if you don't see anything right away - or even if things get a little worse before they get better. Try to be hopeful but patient. Kara

Now that you mention that, my dd8 also had a sore throat for a few days at the begnning of Sept. On the third day I looked inside and saw the bumps, too. We went to the doc, throat and lab cultured - both negative. Then a few days later did a blood draw. As for the blood test results it was actually the first time since March that her Anti DNase B fell in the normal range (we cultured her 2 or 3 times between then). Her sore throat went away on its own (or at least without changing the dose of abx she is on prophylactically.

No - not every child has every symptom. So for example, my dd8 has OCD, emotional swings, and ADHD like behavior. She doesn't have the tics, the urinary issues, the handwriting deterioration. These behaviors definitely sound OCDish to me - a primary symptom of PANDAS. It will be interesting to see what happens MOnday. Keep us posted. Kara

I'll keep you and your family in my thoughts, Vicki. On a different note, I saw someone write about strep test kits that you can buy. Do you need to go to the clinic or can you get something like that? Or do you need to go to the clinic so that if the tests are positive you can get a prescription? Just trying to help you avoid not only the monetary cost but also the exposure cost of going to a clinic. Kara

Welcome. What is your home country? Are you living in the US or there?

Thanks, I'll look into these. We've tried the gummies with her - my non-PANDAS son likes them, but my PANDAS daughter does not. So between that and Dr. B's comment about needing a ton of it, I didn't push it and just relied on the ibuprofin. Maybe the sqeezers will be my answer to both... Any particular place you've found on line with the best price? Thanks, Kara