T_Mom

...forget the online book idea...let's raise money for Dr C by selling "Buster Rocks" bumper stickers...

The best take-away from the OCF conference is summed up in Buster's note on an earlier thread: I'm not sure anyone really quite knows what's going on yet (i.e., are we seeing primarily an anti-inflammatory response? Are we seeing a dilution of Tcell activation through by shifting Th2 to Th1 response? Is IVIG blanketing Fc receptors and reactivating Tregs? Does IVIG, Augmentin or Azith have effect on IL6 production and thereby shifting immune response? Who knows. AND that is from the one person outside of the doctor-circle (so to speak) that I would tip my hat to-- Best quote of the week--Thank you!

Hi EAMom--I pm'd you as you know:) but will add this for "the record" that our experience mirrors Worried Dad's--almost to the day! Younger d was really suffering (OCD/Pandas) and we tried Augmentin 875 2xs a day...saw obvious improvements...switched up to Augmentin XR 1000mg 2 xs a day and have been on it since last November 2009. Doing much better--though some symptoms when tired or stressed--overall, MUCH improved on the XR. Let us know what you decide to do and the outcome! Great thing about this forum is that we generate data continually-- Two girls on full strength antibiotics--which have been a total life saver for us--one for 19 months, the other for 8 months. ps--Worried Dad, I want that logo!

Welcome and I am so sorry you have had to find us here! This is a group of caring members who have been through alot--I would agree with KaraM that the Helpful Threads at the top of the PANDAS forum page have critical information. Also--the www.pandasresourcenetwork.org well worth spending time on-- All the best--please keep us posted.

I was struck that all who were speaking at the conference CARED! It was a blessing to hear the speakers through out the day--and it was also sobering to think that so many children are as yet without hope of treatment-- The tide is changing--thanks to many who have given time, energy, and concern to make it so. Just think where we were two years ago...huge steps folks, huge.

FANTASTIC!!! Even if it has some ups and downs over the next 6 months...He is on his way--thanks to your persistence and follow-through. That is one wonderful post, thank you.

Hi -- Welcome. I am sorry you have had to find us here, but this forum has been a life-saver for us-- During my daughter's worst time we did a steroid burst followed by antibiotics--and Yes, we saw a "sudden and obvious" recovery, just like Dr K talks about. In our case, antibiotics, long term full strength has been the key--with two steroid bursts along the way (at the same time). MRI showed sinusitis only--and we never had a pos. strep test. Hold steady and hopefully this will pass with treatments--

TMom -- Any luck with this? Or is the group heading to Cafe Italia for pizza at 6 p.m. your idea? Thanks! Hi -- no not our idea, but we learned that some were to gather there and thought it best to join in rather then have two dinners -- our hope is to get as many of us as possible in one room! Cafe Italia is close by-- I am so GLAD that we will be able to put some names to faces-- at last! Take care--

Great Trudy--and YES, you are correct on the time. The last Ps presentation ends at 5:30 pm so I believe to meet at the restaurant, 4 blocks away at 6pm will be tight. I am aiming to arrive around 6 to 6:15 or so...

Hi All-- If anyone is going to the OCF Conference this Friday, please join us for a chance to meet over pizza Friday night at Cafe Italia, 4 blocks from the Hyatt. This will be a very informal affair, but give us a chance to meet each other and chat--We would LOVE to meet you! DCMom and I truly hope to meet as many there as possible. We plan to arrive at Cafe Italia between 6:00 to 6:15 pm. Let me know if you are planning to come and I will make a reservation -- (there will be a few extra seats on the reservation in case you forget--JUST COME! ) I understand the concierge desk at the hotel has 15% off coupons if you would like to pick one up for Cafe Italia. Directions: go out the front door of the Hyatt and turn Right, walk to 23rd street, go Left and the Cafe will be on the right. ADDRESS: 519 23rd Street South, Arlington, VA 22202-2517 (703) 521-2565 Best to all-- TMom

Becky--I am really sorry you are going through this--there are alot of understanding parents on this forum who can say they certainly understand. As far as classification can you get her identified under "OHI" Other Health Impaired? This umbrella term is a formal special ed. diagnosis and certainly easier to shed then ED and certainly much more accurate for PANDAS behaviors. Since this is an "exacerbation" issue, and not your typical chronic ED I think you could definitely argue the identification should be under OHI. Home health support may be much easier to ask for as well if her behaviors are seen as illness related vs. ED. I applaud that fact that you have been able to get a "diagnosis" for PANDAS and treatment. There are a number of us on the forum who found full strength antibiotics for months to work, in our case our d also had two steroid bursts which did wonders to bring her back to herself -- it moved recovery much closer to us in a short amount of time--have you considered that I wonder? If you click on a person's name and then go to their "profile site" on the forum you can read all their posts (tells their stories of symptoms and treatments) Click on the options box on the far left column (hope that makes sense--it is not obvious.) and from there click on the link to read the posts, you get them all. This was a huge help to us when our d was first diagnosed. All the best, TMom

Wow! Our initial exacerbation resolution was similar PMom! Our d had not been speaking for over 3 weeks (later said OCD told her not to), she was crouching and holding painful positions until it hurt, eyes closed, saliva in her mouth, not walking, bathroom accidents, only on her knees in a ball on the floor--We started the antibiotics and did the steroid burst... Dr. K had said that IF it was Pandas we would see a sudden and obvious change--You know what, we DID! August 26th, 8pm, she walked down into the kitchen started talking, eyes open, like it was totally normal-- My younger d came up to me and whispered, "Mama, *** is talking!"...grandparents cried on the phone that night, etc. Next day the psychiatrist OCD expert (truly considered an expert) used the word miraculous...it was! antibiotics...steroids...and lots of prayer:)

Thanks guys. These stories are all so uplifting. I hope I get to experience some of the good stuff too. So far lots of ups and downs, herxing, flipping and switching antibiotics. Am afraid of doing a steroid burst because I hear once the effects wear off, the flare ups come hard and fast. I have seen a few good days and then have also seen new tics emerge on Biaxin. Keeping my fingers crossed.- Jodie Hi Jodie, I just sent you a pm-- Just for the record, with my daughter the ** steroid burst essentially boosted her back to 95-98% and then full strength antibiotics continued for months...and never a back-lash, I believe BECAUSE the antibiotics kept her steady, and continue to do so--just wanted to be sure you know that there are alot of us who have had good success with steroid bursts (when continuing on full antibiotics.) ** note: that was her 2nd steroid burst--when we did the first one (9 months earlier with the really bad episode) we did not continue her on full strength antibiotics that first time, and she DID have reactions (PANDAS OCD/mild tics) 3 episodes that fall/winter when she got colds. OCD symptoms diminished each time with 10 day treatments of abx. We found antibiotics to be a key treatment--thankfully.

Judith--I am so sorry your son is suffering with severe OCD symptoms. I know how painful that is to watch-- As you may know, Dr K. www.webpediatrics.com often uses a steroid burst as essentially a "test" to see if IVIG might hold potential benefit for a child. If you have seen an improvement on antibiotics (and we did too) -- have you considered trying a steroid burst? Our daughter was greatly helped by two steroid bursts while being on full strength antibiotics.

There have been a few parent discussions on the differences in "types" Augmentin prescriptions--it has to do with the levels of Clavuanate acid (sp?) and there are guidelines...I hope this is helpful, here are a couple of discussion links-- http://www.latitudes.org/forums/index.php?...art=#entry50453 http://www.latitudes.org/forums/index.php?...amp;#entry51288

I didn't realize that some of your kids stayed improved with a burst. I am not going to get my hopes up, but boy would that be a dream come true. I will just enjoy these days while I have my daughter (mostly) back (and stop fearing when the nightmare will return). She is writing in her diary again!!! Parents4eyes--please note that our d continues on FULL strength antibiotics, during and ever since the steroid burst. We see it as the steroid burst "kicked her up and over" back to herself, but the antibiotics are definitely treating her and continue to--we believe. It took months and an additional steroid burst to get back to herself--and we continue full antibiotics which I believe have some anti-inflammatory effect.

Kara--I really agree with DCMom that the passing of time with ongoing treatment (as necessary) is effective--but for our daughter it took a good 6 to 9 months with full strength antibiotics and two steroid bursts along the way to see her back to 100%. I will never forget one doctor who had the audacity to tell us that "no one is 100%" when I tried to explain to him that I just wanted her back to herself--She did come back to herself, but no thanks to that professional-- Don't stop until you get your child back. As long as you can see ongoing progress, over time, that is a good sign--but it does take time.

DCMom and I were looking at trying to find a room in the hotel restaurant Friday evening for those who want to meet after the last PANDAS presentation that day (which ends at 5:30pm) so maybe Friday evening, 6pm to 7:30pm. At least give some of us a chance to gather-- I will try to locate a place and post it soon. TMom

I believe that Dr K told us once that the longest he had seen steroid effects last was 90 days (I think that was the limit he said...)--BUT that was 2 years ago and before we were all using full strength long-term antibiotics...as an ongoing treatment! We have had LASTING effects long-term after the steroid burst when we continued with FULL strength ongoing antibiotics...still on them!

Full strength for us has been the strength that would be given IF our child had strep throat. Note: one of our daughters is on full Amoxicillan (for the past 18 months) the other has been on the "Saving Sammy" dose of Augmentin for about 6 months now--both doing well. The Saving Sammy dose of Augmentin is higher (I believe) then it would be for our daughter's weight if we were "just" treating strep. Best advice I ever got was to TRY one month of FULL strength antibiotics--and you know what, it worked... and continues to work. (Thanks EAMom.)

Yes LisaMarie, our d had an obvious recovery week to week with FULL strength LONG TERM antibiotics...for 3 blessed months, and then we did a second steroid burst (the FIRST steroid burst had started recovery...) With the second 3 week steroid burst + full strength antibiotics she came back to herself. Our daughter has been on LONG term FULL strength antibiotics for PANDAS for 18 months now. I am curious as well -- will you continue on FULL antibiotics as long as improvements are being made? Are you able to ask the doctor if this is possible as long as week-to-week you can demonstrate that your child is making improvements? We are ever so glad we did--All the best and Happy Fourth! T.

http://www.latitudes.org/forums/index.php?showtopic=5023 The above link is to a thread that is located at the top of the PANDAS forum under "Helpful Threads" There have been a number of helpful doctors treating PANDAS listed this week on the forum-- Please click on the above link and post the information at this central location for other parents to access--thank you. Please note: the Helpful Threads link is only for posting of info. not for discussion. Best to all-- TMom

I cannot help but wonder re: the "location." --could it represent possible lack of sunshine for the NE (but then where are the folks in the NW) or maybe it shows those of us who found the ACN forum and have time enough on our hands to frequent it?... Where are the rest of the CA folks... ! I am moving to Hawaii--

Dear Joan, I will be anxious to hear what happens next -- We had an MRI but only sinus congestion showed up -- though I did ask for a second radiologist to read it, and have since taken it with us to show a neurologist for additional readings. Would that be helpful to get a second opinion? All the best to you--please keep us posted.