Kayanne

Dr. Latimer is in Bethesda, MD. Her office takes payment upfront, and then bills your insurance as "out of network"...you may get some of it reimbursed. She may even be in your network. She is one to the top PANDAS docs...if you are nearby, I wouldn't hesitate to see her because in the long run, you may pay more by visiting several docs who don't treat or are not as familiar with PANDAS. However, keep in mind that she has been out for personal reasons, and may not have regular office hours for a while.

bumping this up...I almost forgot to vote today

I agree with LLM. This has been our experience too.

Yes, I stopped my daughters' fish oil a few weeks before their surgeries...the office didn't tell me specifically, but their instructions were anything that is anti-inflammatory...so keep that in mind because there are a lot of things that fall under that category...fish oil, curcumin, advil, prednisone. 7upMom, I'm hoping everything goes off without a hitch!!

This may sound harsh, but I think you need a new pediatrician...any doctor who doesn't treat a positive strep test is negligent.

It does seem that this poor cat had PANDAS-like symptoms...so sad

:) Kelly and Vicki, I'm thanking you from the bottom of my soul for taking the leap and starting this and following through even when it became tough. It is a MAJOR accomplishment for PANDAS on SO many levels...the publicity, a grant given to continue research, but by far (I think) this has really furthered the legitimization of PANDAS. I think you are right to be asking "what next?"...I am so thankful!!!! I cannot wait for Dr. Cunningham's reaction....perhaps you could suggest she make a youtube video? I also want to point out that this forum is really a KEY player in this win...so I also want to thank Sheila, Chemar and anyone else who contributes to this site....Thank you!!! :D

I'm still overjoyed :D :D :D Kelly and Vicki you guys did a great job!! Thank you so much!!!!

I'm really glad you are seeing improvements. How long and what was the initial dose? Just curious.

GREAT JOB!! I am so proud of you!!

I don't know the answer to that...I think it really is a case by case basis. I am under the impression that if a child is not 100% or very close to it after the month of steroids, then IVIG or Plasmapheresis is needed. I think my daughter's case is a minority on this board...her PANDAS was caught and treated early...that is why I think she responds so well to prednisone (so far) Fortunately, we have not had to deal with yeast...but I have read that prednisone can cause a yeast infection to get worse....so do be careful.

Yes, my dd was 98% at the end of her steroid treatment...100% 6 weeks after and stayed that way until her siblings got strep. Then the second time, she was 100% at the end of the treatment in April, and is still there.

I am SO happy to hear that the latest illness didn't create any problems....I got teary reading your update...so so so HAPPY for your family right now !!!!!

I AM SOOO HAPPY FOR YOUR FAMILY!!!

Awesome...definitely keep us informed.

I tried to send you guys a pm, but your in boxes are full...

This is so true!!! I want to say that I agree with all of the previous posts...keep your head up. I also want to say, that any PANDAS parent that I have reached out to on this forum has been MORE THAN WILLING to speak to me on the phone. Perhaps a phone call between your mom and another PANDAS parent may help bridge the gap between you and your mother? Please feel free to contact me by pm, if you would like any help at all....my experience has been with a 6yr old PANDAS daughter. There are many on the forum who have teenagers going through this...perhaps a pm to one of those parents? I also want to say that it is great to hear your perspective on PANDAS.....so many times we parents are wishing we really knew what was going on in our child's brain, and they just are not capable of letting us know!! Good Luck, I will keep you in my prayers. ~Karen

When you say "taper", could you be more specific....is he tapered off now, or just down to a different dose? My daughter took pred twice...each time for at least a month...the first week at full strength---we definitely saw some more intense screaming and raging. Then she took the second week at half the original dose she seemed calmer. For us with each drop down of dosage, she seemed more like herself again....I need to add that my daughter doesn't have any problems with co-infections or yeast.

Another potential way to increase votes is through Facebook....the voting application that you can install is so quick and easy....it makes it really easy to reach out to friends to vote...everyone PLEASE PM ME...I can give directions on how it works, if you are not familiar with Facebook. ~Karen

So according to what Swedo said, it takes a full 3 days to be fully protected...so in the beginning you should be piggybacking with another antibiotic for 3 days. If you miss a dose of pen (or are late) then the levels in your blood completely leaves your system in 15 hours (3 hours late of a every 12 hour dose), and it takes another 3 days to get the blood levels up again? See, I never understood that (I have heard it before)...and now it is beginning to make some sense. Am I understanding this correctly? Because I had considered pen vk a failure as a prophylaxis for us...but we were giving every 12 hours...and sadly some doses were a little late--I considered a 1-2 hour window okay...but if I am understanding this correctly...that window is cutting it way too close. Perhaps is wasn't a failure, instead it was more compliance on our part. Truthfully, I was much more at ease with her on Pen vk, and so was her ped. It really is only good against strep...so the good flora doesn't really get comprised with pen vk. However, this is where I am confused...I thought that by following the recommended prophylaxis for RF, we would be protected...it seems to be a proven protocol (my uncle took penicillin pills for 20+ years with no side effects or gut issues). But, in light of this is MAKES PERFECT SENSE to dose every 8 hours not 12...so you always have an overlap of protection. Would you all think I was crazy for reconsidering pen vk 3 times a day as a prophylaxis for my daughter? Of course, I wouldn't switch until weeks past her T&A and we are sure she didn't get any strep into her system during it..... Perhaps, we need to start telling new parents on the forum that Pen should be given 3 X/day and not twice.?? Any thoughts???

It just stinks that there are not enough doctors treating this properly, that we can actually go to for this type of advice...

Eileen, I was going to send a pm, but I remembered your inbox may still be full...I heard from the ENT's office, and the Dr. is going to add IV antibiotics for BOTH of my girls!! Thanks so much for your input today ~Karen

Another possibility of a negative strep titer is that the blood work must be done at a certain time interval past the infection...to give time for the antibodies to rise to a sufficient number. Wasn't your daughter just diagnosed with a strep infection? How long ago was that in relation to the blood draw?

I have to chime in here...I want everyone to know that I really didn't do anything with this project...ALL THE CREDIT goes to Kelly, Vicki and Jill. I sent a few pesky emails to the girls once in a while, and agreed to post some comments per Vicki's instructions...I can't take credit for something I didn't do... But I second MomWithOCDSon's comments completely...all of the hard work and bull @#$% that you have put up with last month (and currently), laid the groundwork for this month...and I thank you from the bottom of my soul!!!! WE ARE GOING TO WIN THIS !!! VOTE, VOTE, VOTE....we are half way through the month, we can send a reminder email to our contacts....let them know we are winning...people love to be on a winning team...we have a lot of momentum right now!! YEAH! YEAH! ~Karen

My daughter did take prednisone while taking azith, amox, and omnicef. As for any abs?...you would need to clarify that with a doctor. Dr. K's 5 day protocol is essentially to prove autoimmunity...if there is an improvement on prednisone then IVIG will probably work (but I don't think that is written in stone for his deciding to perform IVIG on his patients). A month of prednisone is usually considered a treatment. Some children can fully recover from a PANDAS episode with just prednisone and antibiotics.