Kayanne

Primarily Breastfed...with formula added in...weaned by 10 months for all of my kids. The article that PhillaPA is referring to is the Q&A on J. Zulli's website: http://www.e-pandas.com/index.html

I decided to bump this thread up because it is so wonderfully hopeful, and there are so many new people on the forum.

SO HAPPY -- crossing my fingers that it sticks!!

FANTASTIC!!! Thank you so much all of this!!!

You can also hit the "Add Reply" box below the dark blue line. That button means a general reply to the thread and will not include quotes. The little light blue "Reply" at the bottom of the text box means a direct reply to the content in that box, and that is why the quotes are included. If you are replying with a quote in the text box, make sure your reply is not within the beginning quote command [ quote ] and end quote command [ /quote ] -- Just remove the spaces that I put in after the beginning brackets and ending brackets. I had to put the spaces in so you could see the actual format commands, and not see this:

I am not positive, but I think anything beyond 7 days must be tapered down...so I wouldn't give your 7yr old the refill unless you have an extension for the tapering doses over the next week or two. I don't know for sure if you can stop and wait a week, and then do a whole month...I don't see why not--other than it is interrupting treatment---but you may be lucky and see results in 5 days with permanence...and not have to go on...I wish we all had a crystal ball!!!

Colleen, I agree w/the other posters about a longer course of steroids. Do you think it would be possible to push for an extension if you children are not having any significant side effects on the high dose? Five days just feels like it is stopping the medication before it can truly do it's job...just my general thoughts--obviously, it is between your family and your doctor to really decide.

After reading this: http://www.sciencedaily.com/releases/2004/12/041206213515.htm I found some more...the abstracts seem interesting...but it's way over my head...so, I am not sure if they are related, but I wanted to post them for those of you who think this is light reading...LOL! http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1111994/?tool=pmcentrez&report=abstract http://www.ncbi.nlm.nih.gov/pubmed/14734160 http://www.ncbi.nlm.nih.gov/pubmed/10427725?ordinalpos=1&itool=PPMCLayout.PPMCAppController.PPMCArticlePage.PPMCPubmedRA&linkpos=2

So glad!!

was this skin testing?

THANK YOU, THANK YOU, THANK YOU,...... what a wonderful story can i pick at a couple of details.. 1 was there any gap between taper and the 2 weeks of 5mg... 2 how old was your daughter then and how much did she weigh 3 so she finished taper mid june ish...and you had about 7 months w/o a relapse!!! 4 is/was your daughter on any propholactic abx??? does doc L think the system is in overdrive..and any thing can trigger it..and body on high alert...(as in, until you do pex) or does she think this could do it and eventualy the body will stop reacting this way?? i realize you may not know??? if your daught relapses again...will you do the same...or at some point and age do you need to go for more Thanks Kayanne 1. no...we continued on the 5mg for a few days, waiting to hear from the Doctor...we would have stopped then if we were told to, but she said to go for 2 more weeks 2. she was six then and weighed about 42lbs 3. last dose of pred was on July 18, and I would say yes, we had 6-7 mos without PANDAS symptoms. She even had some mild colds, allergies and the flu... It is a little hard to explain, but she did have a BAD head bang in November, and we gave her the H1N1 vaccine--and we began to see a "slowing down" like a sub-clinical ADD...ya know always cutting it too close and almost or being a few minutes late...but it never got worse, and it actually seemed to get better by Jan. In Jan, we took her to the ped because she was complaining that her urine would still leak onto her leg when she was done...urine culture was negative. I was telling the ped about her slowing down, and how it seemed to be getting better. Looking back, however, we were seeing a lot of reluctance to eat again...not enough for alarm, but it felt like a several weeks of my husband and I giving each other sideways glances. There was a persistent cough in our house. In Feb, eleven days after confirmed strep in my house, we were sure the PANDAS was back. Who knows? If we didn't get strep again, she may have been fine. 4. Yes. June-Sept. 2009 she took 100mg azith daily. Sept-Feb 2010 she took 200mg pen vk 2x/day. Feb she was put on full strength omnicef 150mg 2x/day, and she is still on that...follow-up is in Aug...and I would like to get her back down to a prophylaxis dose of a more narrow spectrum antibiotic...I'm hoping for a cephalosporin...but I don't know if there is such a thing as a narrow-spectrum cephalosporin. From speaking to other parents, whose kids are treated by Dr. L, then I would say yes she believes that other illnesses can set this off once the process has started. She told us a couple of times...this is "immune mediated" She has told us, that in our daughter's case, we will probably be able to manage this with prednisone, and she has mentioned other cases where she treats with pred once a year. However, I do believe that if we need to go the route of IVIG or PEX, she will do it. If we see a relapse, and it has been several months since the last taper, then yes I would do it again. If she didn't respond to prednisone, I would have to weigh the risks vs. benefits of the other procedures---and I would seriously consider doing one of them.

Fixit, I can give you our success story with the pred too. In March/April 2009 was my daughter's first recognizable PANDAS episode. She was having symptoms for about a month and a half before Dr. L prescribed prednisone. We saw steady improvements, by day 27 she was about 75% better, but by no means were we happy (I was gearing my mind up for PEX or IVIG)...she still had a long way to go. On Day 28, she began to speak and socialize again. It was like she suddenly went from 75% to 98%. Since she was so close, we extended the prednisone (5mg 1x/day) for 2 more weeks...she was still about 98-99% at the end of that. Her minor issues were ones that only we her parents noticed...in August, she began to write independently again. By Sept, her reluctance to go to the bathroom had stopped. So for us, yes the healing continued after the prednisone. She had no problems last year at school. Feb, 2010 my other 3 children were positive for strep, and my daughter's PANDAS symptoms ramped up again. We saw Dr. L again, she started another 5 week taper of prednisone. Within 2-3 weeks the PANDAS symptoms were gone. She is still fine.

Thanks Laura!

IV antibiotics during the procedure, and continuing on the azith afterwards. You may also request that his tonsils get sent out for a culture to see if there is strep in them. You need to ask this before the procedure. Good luck.

There has been a lot of discussion about Dr. K's presentation, and I truly appreciate everyone's input because I was not able to go. For those of you who attended, could you comment about Dr. Latimer's presentation. In particular, I am curious if she addressed a success/failure rate with a month of steroids?

Hi...PhillyPA!! I totally agree...my daughter's quirky behaviors were the first to be magnified and disruptive when she had her bad PANDAS episode last year. One of the reason's that it took us a few weeks to really realize that something wasn't right was because some of the behaviors just weren't new.

I'm so sorry you're going through this right now...((cyber hugs)) and prayers... CHOP -- Pittsburgh or Philadelphia?

Saving Sammy, page 4: "Prior to the onset sixteen months ago, Sammy did not exhibit any of the behaviors outlined above, with one exception. Four years ago, in the winter of third grade, he started having a tough time. He would curl the fingers of his left hand up and into his sleeve. We eventually figured out that he had a learning disability in reading. With a special reading program in place to address this challenge, the hand gradually dropped down and out of the sleeve." Page 32: "But I knew he (Sammy) was referring to the child psychologist he'd seen briefly in third grade when I thought he might be having some emotional issues. The sessions ended when I'd realized that what he actually needed was a different reading program." Pages 37 & 38: "New behaviors continued to come at a fever pitch. Sammy stopped using his hands; they shrunk up into his sleeves." Somewhere else in the book, Beth writes that she is very proud of her son for overcoming his reading disability...but I can't find the exact page to quote it. And on page 112, Beth Maloney writes that the result of the strep titer was 400 It's a healthy positive, but I don't think it would be considered off the charts like some of the families on this forum. Nowhere in the book does Beth say that she believes his difficulty in third grade was related to PANDAS. However, I think she wrote enough that one could make a case that he had a previous PANDAS episode. I think it's related.

Last year, my daughter was prescribed Augmentin for 10 days with Rifampin on days 7-10. It didn't clear her strep throat. We then moved onto 10 days of clindamycin--which finally cleared her. In retrospect, my other kids took rifampin (on days 7-10 in addition to another 10 days of whatever antibiotic they were on) and it was capsules that we opened and added to yogurt and that cleared them. But my PANDAS daughter's rifampin was in liquid form, and I think there was a mix-up in the timing of when the doctor called it in...it was mixed and waiting for a few days when I picked it up, and some of the antibiotic settled and stuck to the bottom of the bottle...so in all fairness, she may have not had the same doses as my other kids. I took augmentin twice, and each time I got a pretty bad yeast infection.

I'm so happy for your daughter and your family!!!

We could only give 2 doses of liquid clindamycin. It was horrible trying to get her to take it. The pharmacist gave us capsules instead, and we carefully opened them onto a spoon with a slight covering of chocolate pudding, and then would dollop pudding on top...we gave a regular spoonful of pudding, then the one with medicine, and then we followed with another spoonful of just pudding

I don't know about the tylenol...but I know you should avoid the motrin because combined with the pred, it can be too hard on the stomach...the package insert should list medications to avoid.

I just wanted to add that even though I only answered that 1 out of my 4 kids has PANDAS....I'm not FULLY convinced that my other kids don't have a low level of it. If I had never heard of PANDAS, I would say some things were just them being difficult, and/or going through a stage...and that would be it. I don't think any of their "suspicious behavior" has been enough for me to justify antibiotics or prednisone...and certainly not IVIG or PEX. I treat with a good multi vitamin and mineral, extra vit C and OmegaBrite....I do think the fish oil helps. It is just so hard not to look at behaviors through a PANDAS lens...you all can relate to that.

I did receive a quick email from my friend right at 5:30 -- she said Dr. L and Dr. K's speeches were the best...but I haven't heard any more. I know she was planning on going to the dinner. I'm dying to know what the big announcement is!!

Your daughter sounds just like mine...many of the same symptoms. Her OCD didn't seem to have compulsions either--just obsessive thoughts that shut her down. A ped psych that we saw told us absolutely that OCD can just be obsessive thoughts...but the excessive chewing is a compulsion in response to her fear of choking...you are describing a compulsion. OCD is not just what many think of as rituals...the thoughts can be debilitating. What part of the country are you from? Have you had your daughter back to the doctor's to confirm her strep is gone? I wish I could post more, but I have to go...hang in there!