KaraM

How many mg is 1.5 tsp? I would go back up, but let Dr. B. know what's going on. I believe 300mg. (200 mg per 5 ml).

I have been really encouraged lately. My daughter was about 90% better and I heard from many of you that the rest takes time. And it did seem she was continuing to improve. Yesterday, her teacher asked me if I thought she would have problems swimming in the public pool during their park field trip. I responded that her contamination fears are just about gone. Of course, last night and this morning, the questions and avoidance are starting to come back. Bags are too dirty to carry her stuff in; her hat is contaminated because it fell on the floor; where did I get this? Did that touch something else? Curiously enough, she also had a bloody nose (a very small one). But this is the first one since in at least 6 - 8 weeks. I'm wondering if I should take a wait and see approach and take this opportunity to work some more on CBT/ERP or if I should just go back to 1 1/2 tsp. (Dr. B had reduced her abx from 1 1/2 to 1 tsp of Zithromax a couple of weeks ago.) I should probably call Dr. B....right? I appreciate anyone's thoughts nonetheless... Thanks, Kara

I feel the same way.

:wacko:OK - this is my third attemp at writing about the conference. I got interupted once and screwed up last time. After writing three parapgraphs I lost my post...I think my hand keeps hitting the mouse pad....Anyway, if it showed up somewhere, I apologize for being repetitive... I think the biggest reason I went was to meet many of the wonderful people on this forum who have helped me fight this fight. For me, that was just incredible. Even thought I finalloy got to say a personal thank you, I will stil feel I can't thank people enough! As for the presentations: the researcher track with Dr. C and Dr. Leckman was over my head a lot of the time. I knew it would be walking in... However, one thing that Dr. Leckman said that I don't think anyone has mentioned yet in addition to subsequent infections, "stress" can induce an onset of PANDAS symptoms. Yikes! How many emotions does that bring on... I think all of the doctor's who gave presentations on their diagnostic and treatment protocols were truly just sharing information about their experiences. I didn't get the feeling there were "camps." They asked questions of each other during presentations and discussions. I know some met with each other outside of the presentations as well. They were a very professional group. I think they are all trying to figure this out, too, by learning from each other. I am so grateful for that. I wish I had copies of slides in addition to the limited notes I took. My understanding is that they will eventually be on the OCF website. I hope that's true. I especially feel that way for Dr. K's presentation, because he organized things in such and informative way. But because I was concentrating on listening, I did not take good notes. First, he categorized symptoms into 3 categories: psychiatric, physical and social. He also said that certain symptoms cluster together (at least I think that was him - but maybe it was Leckman). So, for example, OCD is often accompanied by rages and ADHD; tics by eneuresis and something else...(sorry - hopefully you get the picture and the slides become public - or maybe someone else took better notes). Dr. K also established diagnostic criteria. Two absolute criteria (OCD and/or Tics). Major criteria and minor criteria. He will diagnose a child with PANDAS if they have 1 absolute criteria and 2 major criteria or if they have 2 major and 3 minor. (Again, I was counting on the slides so I can't say which symptoms from the well known PANDAS list fall into which categories). As for his comments on treatment. He said he always uses a steroid burst to diagnose. 95% of his patients responded significantly but temporarlily. As for antibiotics, my notes are a bit different from what I've heard others say. I wrote that he thinks antibioitics can be enough "if diagnosed early enough." Otherwise he feels IVIG is the only long term solution. PEX works if followed by IVIG (except for significan TIC disorcers with minor OCD, then PEX may be preferable). He also said if the IVIG dose is too low, it can make things worse,not better. Another comment that I found interesting was about the average amount of elapsed time and the effect of treatment.He said he doesn't see a difference in treatment results based on duration - so if you child has had PANDAS a long time, s/he can still be treated succesfully. However, he does see a difference by age: not as much success in kids over 10 (but still has some success - so don't lose hope). The parent presentations of their childrens' history were all both heartbreaking and inspring. Thank you for sharing your stories. Laura's presentation on the difference between typical OCD and PANDAS OCD was also very helpful and a different twise on a parent presentation. One other thing I want to add is about a session I went to on how OCD Manifests itself in Families. The doctor/therapist that presented there treats children with OCD. She had OCD as a child, too. She sent me away with some thoughts that I will try to remember when my daughter is in exacerbation. First, she gave us some images and exercises to demonstrate how difficult it is to control our thoughts (don't think about a yellow duck. don't think about a yellow duck in a blue pond....now, think only about a yellow duck for a minute). No matter how hard you try, you can't not think about the duck or you can't think only about it for a minute. For someone with OCD, their thoughts are assaulting them. they can't control it. But we can control out behaviors. That's where the CBT/ERP and habituation come into play. But this was the real kicker. She was trying to get us to understand the level of discomfort they feel when they obsess; why they get irritable; why they can't focus on other things. She told us to imagine that our child was missing for 12 hours. Then she told us our child was missing for 48 hours. Can we think of anything else? Can we get that project done for work? How are we going to respond to someone who asks us where the milk is? O.k...I'm going to hit "add reply" before this post disappears on me. Kara

Hi, My 8 year old duaghter is about 60 lbs. She is allergic to amoxicillan, so can not take Augmentin. At then end of March, our pediatrician presecribed 350mg of Zithromax for 5 days, then dropped it to 175 until we could see a specialist in early June. This dose helped her significantly - so she was about 80% better. When we finally saw Dr. B. in June, he increased her to 350mg again for a month. She improved some more - now she is about 90 - 95% better. He reduced to 200mg and thinks she will need to stay on that through the winter - unless of course she has an exacerbation.. Kara

I'm coming! Can't wait to meet people and learn more! Kara

You just need to email Dr. Cunningham. I included a brief history of my daughter's situation when I emailed her. She responded within a day or two that my daughter could be in the study and that they would send out a kit. In our case, the kit did not arrive after a week or so. I followed up with one of her assistants and somehow our request got lost in the shuffe (Dr. C's mother had just passed away, so it was completely understandable). The kit arrived a few days after I spoke with her assitant. (My point is, follow up if you don't get it after a few days). There will be instructions, but here's the gist... Once you get the kit, you bring your child to a lab and have the blood drawn. then you need to bring it to a fed ex drop off (they include the label) and have it shipped out for overnight delivery. You don't want to do the draw on a Friday or it will sit over the weekend...They will also want a copy of your child's health history from your doctor. There are some study forms to complete as well. I copied the below from Pandasresourcenetwork.org: If you are interested in participating in the research trial, please contact Dr. Cunningham at madeleine-cunningham@ouhsc.edu This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Hi, Our pediatrician had heard of PANDAS, but his understanding of how it presented was incomplete. My daughter had a negatvie throat culture, so he did not think my daughter could have PANDAS. A few months later, after we discovered another child in her class with tics and other PANDAS symptoms that tested positive for strep, we pushed for (ok, demanded) abx. He very reluctantly prescribed a 14 day dose of Omnicef. She, too, improved around day 11. Then about a week after stopping she back slid. We ended up participating in the Cunningham study. What eventually convinced him to give her prophylactics were her results from that, the article describing the study and Buster's FAQ, which he thought was very reasonable and well written (again, the FAQ can be found in the helpful threads here or can be printed from pandasresourcenetwork.org.) So, if you can, participate in Dr. Cunningham's study. It may also give you some reassurance about whether you are following the right path. If you need more information on how to get into that study, just post again. It takes about two weeks between getting the kit, doing the blood draw, sending it in and receiving some preliminary results. Hope this helps. Kara

"Not bad" is an understatement. Outstanding would be a better choice of words in my opinion... Thank you! Kara

I don't want to jinx myself, but thankfully, my daughters does not rage as much or as long as she did before starting abx more than 3months ago. But I can vividly remember her sweetly skipping and singing up the street, her braids bouncing back and forth, like a normal, happy 7 year old girl. This was after a rage that had lasted well over an hour, with screamiing, crying, bangin, and words such as "I wish I weren't alive." I remember thinking to myself "what the !@#$!" And that was not the only time there was calm/happiness after a rage. She drew a picture once for me, too, that I'll try to explain. She drew a box that was supposed to be her brain/head. She said she could feel "OCD" coming in and drew and arrow pointing toward the top right hand corner and wrote the words "uh oh, bad." Then, out of the bottom left hand corner she drew a shower spout with water coming out of it and wrote the words "bye, bye, good" She was describing her OCD or "Ollie the Poopster." But the rages went hand in hand...

I don't think she had Prevnar - she had Pneumo Conjugated Vaccine - 7 (is that the same thing as Prevnar??) I do have the serotypes she passed and did not pass: She passed: 19F, 22F,23F, 6B, 11A, 7F She failed: 1,2,3,4,5,8,9N,12F,14,17F,20,10A,15B,18C,19A,9V,33F Do you have any more thoughts? Again, Dr. B. did not have her vaccination/immunization history at the time of the appointment. I had our pediatrician send it after. Thanks again, kara

I'm actually the one who used the word "significant." I chose that because it was really the biggest area of discussion of us. He did not recommend IVIG at this point. He said if she relapsed of if the other tests indicated something, then we might consider pursuing.

Ok - as I read through everyone's posts, the questions you are asking/responses you are helping me understand more. Thank you. I'm looking at her immunization history. If the number at the end indicates the number of Serotypes in the vaccine, then I thnk she would only have been immunized against 7. There are 4 dates next to the vaccing "Pneumo Conjugated Vaccine - 7" Underneath that is "PCV 13 (prevnar 13)" - no dates filled in, so it looks like she did not get this. Dr. B. did not have a copy of her immunization history when I saw him. I had it faxed down yesterday. So I will ask him about this then. Thanks again, Kara

Hi Kim, She receive 4 doses of the "Pneumo Conjugated Vaccine - 7 between June 2002 and April 2003. Does this make more sense? (I have no idea - such a steep learning curve...) Thanks, Kara While I'm by no means any expert in this area, I'm just not understanding how an 8 year old is supposed to show protective antibodies to 23 serotypes.

Thank you for giving me some hope. I'm glad you have your dd back "almost 100%" It was the S. pneumoiae IgG Ab, 23 Serotypes. He did not specifically say GABS. He just said she is "unable to fight off 17 serotype species of strep." He also said she would be vulnerable during the "strep" season.

To be honest with you, I can't tell exactly which test it was. He ordered the pneumococcal IgG (14 Serotypes) again, which would make me think they forgot that one and that the results I was talking about were from a different test - but I can't tell by the names. This stuff is really confusing for me...The results say the test name was "S. pneumoniae IgG Ab, 23 Serotypes." I don't see a name on my copy of the order that specifically states that. Maybe it was part of the IgG Subclasses or some other test...

Hi, My dd8's first visit to Dr. B was last month. He confirmed the PANDAS diagnosis, doubled her abx dose and ordered 19 other tests. I went back alone yesterday to review the tests results with him. Unfortunately, the lab screwed up on three of the tests, so we have to do those again. The most significant of the test results we did get back indicates that she is not creating antibodies for 17 of the 23 strep seratypes, which, in his words means "she is unable to fight 17 of the 23 seratype species of strep." He reduced her abx dose a bit, but said she would have to stay on them at least until next spring in order to make it through the strep season. He thinks she will react to anyone in her circle that has strep. The abx should help her fight it off. He asked how she was doing symptom wise. Compared to her worst, she is about 90% better (thank goodness). We don't have any other plan besides continuing on the lower dose abx. We will talk again if the new results on the three tests we have to do over indicate any problems. I can't believe I didn't ask this of him, but is 90%the best we can hope for? Or should she continue to improve slowly? Should we be doing anything else to get her the rest of the way? We still try to do some ERP, but are not as diligent as we used to be. We do give her Ibuprofin and some Inositol as well. I'll ask this of him once we get test results back, but figured I'd ask people here in the mean time...Does anyone have any thoughts? On a different note - I am toast. Long drive down yesterday and back today. But at least my dd did not have to make the trip, too. Thanks, Kara

Does anyone know if Dr. T. published this paper yet?

Bumping this up to help people remember... we need to continue to help those who helped us achieve our goal as a way to say "thank you". I am asking that you continue to support those who are still in the running in July. We had MANY supporters so I will post different lists on different voting outlets. Some supporters may appear on more than one list. This is the only way I can see it as fairly helping everyone. Thank you so much for saying "thank you" to our supporters by continuing to help them achieve THEIR dream. This list should not change unless at the tail end of the month I need to. I also do not plan on continuously bumping it up...maybe once a week...who knows. Causes will probably continue to email me with requests. This morning alone, I had about 10 sitting in my inbox. Go to www.refresheverything.com Paste into search box… " Skip" / "Sophia Cure" / JETT/ "narcolepsy research" / "james lacerenza" / "studio 33" / "gktw" / "rryr" / "Bethany berg" / "chris scapini" We have also been contacted for help in the face book Chase contest. The person that contacted me is from the Univ of OK Microbiology and Immunology Dept. Her friend is leading a cause in the Chase contest. Her group had been voting for us and she asked if we can help them out in return. So, I ask you to help them as well. You only have to vote ONCE. Not once a day…but ONCE. Period. So, I can't see a reason we cannot help this cause. http://apps.facebook.com/chasecommunitygiv...self&ref=mf If the above link appears blank, please either try again or go directly to thier website and click on the vote icon. http://www.thehugsproject.com/ Thank you!

This was post #56 on the "doctors we have seen" thread. I'm copying it here... I'm a newbie but having looked over the list I didn't see any doctors list for Rhode Island. I have to add my son's Dr. Louise Kiessling- she is a developmental pediatrician out of Brown University and the NeuroDevelopmental Center at Memorial Hospital We were referred by my son's therapist and only after seeing her, being immensely impressed and helped did I discover that if you do some research on her and PANDAS some of her work is cited as a reference. She has been thorough, calls us on weekends and at night if we have issues and has worked so well with our family doctor to be sure that all tests and meds will be covered by insurance by coordinating care with him. This coordination has helped to educate him about PANDAS, which he had been skeptical of but now is a full convert and ally in this fight.

will do...

Kelly, Vicki, Everybody! Congratulations and Thank You. What a great virtual team with outstanding virtual captains! After I share the great news with all of my contacts, I don't know what I'll do with my time in the morning anymore. Kara

Which doctor (i.e. the doctor here or the ped. neuro there) hasn't returned your call. I am pretty sure that Dr. Trifiletti will do phone consultations. Dr. K may, too. I need some advice. I am living in Saudi Arabia, which some of you may have already read before. My son has been in the midst of a severe exacerbation of what I am now sure is PANDAS. He was on a huge downward slide and thank God we managed to snatch him back from the brink just in time. After a phone consultation with a specialist there, he was started on Biaxin 500mg BID and I noticed a significant improvement after just a couple days. Encouraged by this, I consulted with a Ped. Neuro. here and we agreed that since my son still had significant issues even with 50% improvement, we would go for a 5 day steroid burst. He finished the 5 day burst a couple days ago now. Yesterday, he was even better. I can't believe it. My question is, I can't get the doctor to return my emails or tell me what to do now. Should I continue with Biaxin at the same dose and for how long? Should I expect a rebound after the steroids have worn off? What to do???? I am alone here and not quite sure what to do until I can get in touch with either the current doctor there or another doctor. I am planning to try calling his office next. Can anyone tell me what the usual treatment would be? It seems from what I have read that sometimes the antibiotics are switched around, but usually continued for around a month or longer. I am assuming that since we have had a positive response with Biaxin we would continue with that, but the response is not 100%. So does that warrant switching to something else or continuing with the same? My son has been sick for so long without a diagnosis I really want to be aggressive. He has finished about 12 days of Biaxin so far. Thanks for any advice!

I check at least once an hour.