laurenjohnsonsmom

Welcome Jane, You will find strength and support within this forum. Keep us informed in your progress. I have a 2 confirmed children with PANDAS and I am wondering if my son will be diagnosed, also. He is 18 now, but has been suffering for years!!!! Good Luck & Best Wishes, Lynn

XOXOXOXOXOXO Always trying to help. You are appreciated!!!! Lynn So far about 20 people have asked for the form. I'm going to try to put it on a file server so that all can get by http or ftp download. Any comments are appreciated. It's probably best to post comments here so that we can share ideas. Is it too cumbersome to be useful? My idea is that you could look at the whole thing and see correlations that would otherwise be missed in history taking. It is also nice to have it as an excel file, as you could simply e-mail it to your doctor to update them on progress ... This might be good stuff to discuss at the "think tank"! But you guys are the REAL think tank! Dr. T

I believe the newer "trend" is to do the IVIG after plasmapherisis, instead of doing just plasmapherisis. (the IVIG puts the good antibodies in after you take them out with the pherisis). Although lots of people are seeing results with IVIG (one or more treatments), alone, without the need to do pherisis. Don't take my word, as I am not the doc (but I did stay at a Holiday Inn Select)! I have had multiple parents tell me they did not have good sustained results when they just did pherisis, alone. Might add that some people call PEX and plasmapheriss the same thing. Lynn

shhhhh, still ironing out details. (was kind of thrust into commitment). Don't see myself as "the lecturer"..

Looks like we have a lot in common. I just posted my sons "ver vague" but scary history in another thread... http://www.latitudes.org/forums/index.php?...amp;#entry54278 I'm sooo glad Dr. K has been able to help. I just reached out to him today, via email to ask if he will help shed some light on our family (multiple PANDAS). Lynn

Should we make this an "unofficial" PANDAS reunion? Who's in?????

Oh, forgot to add that Lauren had strep with the trunk rash (scarlatina/SF) at age 3 and Mycroplasma Pneumonia (sp?) at age 5-1/2, and right after the Mycroplasma Pneumonia she had this crazy urinary frequency for months, where she would tell me she had to go to the bathroom EVERY 5 minutes (no exaggeration), but had no UTI or bladder infection. Lauren also has has anxiety issues forever. She was medically diagnosed with social anxiety at age 5 (participated in a anxiety study in Boston at the time), had a 504 established at her school in first grade (around the time of the URI frequency and MP) because she went 6 months in the school lunchroom without eating because of anxiety. Currently I haven't slept in my own bed (without her climbing in with me) for months and I can't even go to the bathroom without her standing over me. I believe she is having improvment with the anxiety with the steroids/abx as far as the anxiety is concerned, (back before abx, 3 months ago, she would litterally attach to my body, like a leech, 24 hours a day, she had to be "touching me" at all times) it has not eliminated the anxiety but lessened it, for sure. My younger daughter, I am confident is the carrier (tests positive on throat cultures with no symptoms). She has has unexplained "prickly rashes" often, in the past which I'm wondering was the undiagnosed strep. She falls within l"low-positive" on Madelines tests as she was have a mild onset of manifestation of symptoms when we had her tested. Again, she has mild symptems that you think "are normal" because you accomodate around them for so long (constant GI/stomach issues, unexplained nausea/vomitting, moodiness/irrability, eating issues, weather fears, mild ocd rituals, body imaging, paranoid weather fears, dark circles under the eyes, etc)..All mild/moderate at times. Here's the scary part...My son (who just turned 18), I believe may also have PANDAS. Years ago, he manifested overnight in a more familiar "exorcist" fashion as most of you describe. We spent years on a roller coaster of doctors, psychiatrists, psychologists, group homes and short term psychiatric hospital stays. He went from an kind, caring, bright , honor roll student to "possessed", literally, overnight. He would tell psychiatrists that he had these "ocd ritual ie: like spending hours rearranging things on his dresser when something would accidentally get moved", he would wander the house all night, restless (he NEVER slept at night) and then he would sleep on his desk all day at school. I believe the psychotropic medications made him worse, not better. He would "cheek" his meds and hide them and when I discovered what he was doing he would and told him he would have to go back to the psych hospital if he could not take his meds, he would threaten to kill himself or me. We had no idea what PANDAS was at the time, we thought it was mental illness, so we sent him to live with my in-laws to protect our younger daughters from his rages. Trust me, even though Lauren hasn't, displayed the "rages"so many of you describe, I know how you feel. Our son has a lot of anger over this, and hasn't spoke to us in over 2 years. We are currently trying have his aso/antiDnaseB tested and also hoping to send some sera out to Madeline Cunningham to test. Unfortunately, getting "him" to do this is another story as he is a "legal adult" now and makes his own decisions. Could this be mental illness? Possibly...could it be PANDAS?, maybe. I wold really like to hear from some of the other parents who have "older" teenage children with PANDAS (or suspected PANDAS) and "compare notes". I also would like to talk to the people who are adults that feel they have PANDAS, also. Please PM me or email me at laurensneezing@gmail.com

You will LOVE, LOVE him!!!!!!!! Hi, we see Dr. Bouboulis. His number is 203-655-9904 Darien, 203-323-7744 Stamford (he has two offices.) How far do you travel? We live in Stamford..I can't believe I stumbled across this name-I was ready to go to Manhattan or even Maryland!! I will definitely contact him tomorrow-I pray that he accepts Anthem BCBS as payment (once it's approved). How long have you been seeing him? We have been seeing him since July 09, consulted with him prior to doing ivig with Dr. K, and have seen him for susequent treatments. We were referred to him after seeing Dr. Leckman at Yale and were one of his early Pandas cases. You will really like him, I'm sure. PM me if you'd like add'l info! Best of luck! Thanks so much!! I'm not sure what PM means Also, my son's DNase is 1360 (?)

DCmom. OMG! I thought you were talking about MY younger daughter when you were describing your other daughter (anxiety, ocd, stomach aches, restrictive eating, moodiness) and exactlly how you diagnosed her (through the other daughter). My younger daughter seems to still function as her syptoms are mild (or we have just learned to adjust), sigh.. Did you have either or both of your daughters tested with Madeline Cunningham? Both my girls were in the PANDAS range?

Reactive, I just have to say I LOVE your forum name as it sounds like a superhero name and you ARE a superhero to fight for your child!!! Well said. If we get "cured" I want to continue the fight as well.

My daughter will be having IVIG most likely next week with Dr. Bouboulis. We are still discussing the dosage which will be either Dr. K's 1.5g/k total over two days or 2g/k over two days. We were schedule to have it through Georgetown/Dr. Latimer today but Dr. Latimer chose to abruptly cancel it on Saturday. (a longer story in which I care not to openly discuss on the forum at this time). I can tell you that Dr. Trifiletti, Dr. Bouboulis and most recently Dr. K (Dr. B consulted with Dr. K via telephone today re: Lauren) all believe that Lauren has PANDAS. They all also believe that she may benefit from IVIG as Lauren's sneezing tic cut in half after day 6 of azith, the day we increased the zith from 250mg to 500mg. Lauren went from sneezing 25x a minute to 10-12x a minute. We than added a 5 day pred/steroid burst that caused some 3-4 minute pauses in between her sneezing tic, and she continued to improve through the end of the first 30 days of azith, plateauing (sp?) at 3-6x a minute. That's when we consulted with Dr. B. He switched Lauren to 875mg augmentin bid and put her on a super high 30 day tapered pred/steroid burst. He also suggested that we check the entire family for elevated aso titers (lauren's sister had just tested positive aso) and if found, treat as well with abx fir 30 days. We know our other, younger daughter is a carrier as she has tested positive by throat cultures many times, in the past, with no symptoms. My husband and I both cane back with positive aso/antiDnaseB titers as well which we were told could be the reason why Lauren plateaued on the azith because there was still active strep in the house. So, for those of you still reading this forever post, I will continue Chapter 2! Lauren started the augmentin and heavy, tapered steroids on 12/23. The rest of the family started on 30 days of azith at the sane time. On Christmas eve Lauren started having 20+ minute pauses between her sneezing tic. I was delighted but cautiously optimistic. When Lauren steroids decreased in dosage we started losing her long pauses. Dr. T & Dr. B both said that everything that happened to Lauren just makes a better case of PANDAS and that there is inflammation in the brain but steroids and abx alone (mostly because you can take steroids forever) weren't going to fully eradicate the tick. That's why they have suggested IVIG. I want to stress that we have been over cautious in how we treat/diagnose Lauren as to not put to many variables in place at once so we can understand what works and what doesn't, correctly diagnose and treat the best that the doctors know how to do for now. Because of the media attention surrounding Lauren this approach also makes sense. So coco, there you have it! Hope I answered your questions and more! Lynn

Teri from AutismOne told me it would be tax deductible. You can email her directly and tell her you want it ti go towards the pandas portion of the conference. Her contact info... Teri Arranga tarranga@autismone.org Hope this helps! Lynn It is my understanding that donations are tax deductible. I will double check and confirm.

I know, Uuugh! I meant to put strep infection in the question but was thinking just "illness" to be broad, as many of us know now, that our children did have strep just prior to onset but it wasn't diagnosed immediatley so we thought it was a cold or other virus, etc...

Confused? Are you saying we should poll how many children has a vaccine(s) just prior to the onset of PANDAS? With or without an illness soon afeter (ie: strep infection, URI, flu, etc..)??? I say, start the poll!

Vickie, You ALWAYS impress me with your quick and knowledge packed replies (I forgot to mention having Madeline's test, in my reply). When I am rich (i will have to win the lottery and I don't even play, so don't hold your breath). I will establish a gigantic PANDAS research lab and information network and YOU will be the first person on staff! You ALSO just earned my honorary degree of NERDYNESS! (SF mom was "pinned on", last week)! You're the best! Lynn

Hi Justine, My daughter started sneezing 10-12x a day, literally overnight. It increased to 25x a minute, nonstop, in less than a week. That is more than 20,000 a day! So I can attest to a "constant tic" Did I say she NEVER stopped (except in deep sleep). Although she has responded very well to antibiotics and steroids, and at times, while only on high dose steroids, we saw 20 minute pauses (it was my Christmas present as it happened on Christmas Eve), she has NEVER stopped completely! The "trend" in PANDAS is that motor/vocal tics are the hardest symptom to get rid of 100%, sigh... I can only speak to what relates to our daughter but I believe some children will stop ticing on antibiotic and/or steroids and that it has come back with either being exposed to strep or other infection, after vaccines, etc.. I'm sure many will share their stories with you. PANDAS can manifest in many ways, it has a very broad spectrum. As Dr. K just told me..."Please be aware of the following: the real "trick" in PANDAS is establishing the diagnosis and choosing the appropriate treatment, NOT GIVING the treatment". He is a wise man. In regard to your question.."WHen do you move on"? I would say that if you find no rise in your daughters ASO/AntiDnASeB titers or any other family members (our daughter never got an ASO rise as she is one of the 37% that does not), if she does not respond well to antibiotics (sometimes you have to try more than one to find the one that works) and/or steroids, I might look into other possibilities. My best piece of advice to you would be to consult with one of the PANDAS docs that are trying to help. Good luck. Lynn

I spoke with the hemo/oncology dept. at Georgetown on Saturday (they administer the IVIG for Dr. Latimer) They told me Dr. Latimer uses 1g/k per day a total of 2g over to days for every treatment, every child. This is the same dosage as Buster and EAmom's dd had. So all the parents who have been calling Dr. Latimer re: dosage, you have your answer! It's nice to know that Dr. K and Dr. Latimer use a similar high-dose treatent that has shown to be effective.

I'm glad you saved your questions for the Georgetown staff and were successful with obtaining treatment and benefits.

It's actually called the Beureu of Engraving & Printing because thwy print money/don't make coins there. Here is the link and information. Lauren is ok with the IVIG, we are cautiously optomistic! How long do you plan on being in D.C? We spent the entire 2 hour appointment together with Lauren, so I would either slide her a little note to Faith, her secretary when you check in or try to email her the video in advance or both! Lynn http://www.moneyfactory.gov/tours/washingtondctours.html Washington, DC Tours Located in the heart of the Nation's Capital, the BEP's Washington, DC Tour and Visitor Center is a great place to learn all about U.S. paper currency. You can see millions of dollars being printed as you walk along the gallery overlooking the production floor! The free 40-minute experience includes an introductory film and gallery tour of the production process. The visitor center includes exhibits and currency products for sale. The Tour and Visitor Center is closed on weekends, Federal holidays, and the week between Christmas and New Years Day. Policies Cameras are allowed in the facility, but their use in the tour gallery is prohibited. Visitors must pass through a metal detector and belongings will be screened before entering the building. Strollers are allowed in the facility, but may not be taken on the tour. Anyone found in violation of BEP policies as written or explained by the tour guides, will be escorted off the premises by a police officer. Visitors must follow the direction of the BEP Police while on BEP property. Non-Peak Season Hours September - February No tickets required Space is given on a first-come, first-served basis with the line forming at the Visitor Entrance on 14th Street. The Visitor Center is open daily from 8:30 a.m. to 3:30 p.m. Tours run every 15 minutes from 9 a.m. to 2 p.m. with advance reservations held for large groups between 11 a.m. and 12:15 p.m. Lynn: I can't imagine covering 10 years in 2 hours, but I am armed with my pre-appointment questions and plan to bring a notebook with. Does she spend any time with just the parents or is it pretty much both of us in there the whole time? I am wondering because I have a video (whcih my son would be mortified if he knew I had) of one of his milder meltdowns, but I'd like to show it to her because it illustrates what he goes through so much better than I can explain it. Did you do a tour of the Mint in D.C.? That is actually what my son most wanted to do, but when I went online to check it out, it looked like they only did the tours in Philly? If we could do that while there he would LOVE it. I actually asked our congressman for a White House tour, and despite the fact it usually takes 3-6 months to get a pass, the staffer told me she can sometimes get a spot if she has at least 7 days. But she only got back with me with 6 days left Hence, the Capital tour. She told me to call her back if we schedule a follow up visit with Dr. L and she will get us in then. Best of luck with the IVIG. How is Lauren feeling about it?

(((Gat'sMom))), I'm soooo sorry to hear your frustration. Does your son suffer primarely from tics/ocd or both? I know with tics, they are the hardest to eliminate. Sometimes resulting in pulling out the "big guns"-IVIG! Have you considered IVIG? Do you see a PANDAS doc? I hope you find your answers/resolve, soon! Thinking of you and wishing you success. Lynn "Hang in there. It will come." I need to write that on my bathroom mirror. Geez, thank you so much.

Would you consider "social anxiety/General anxiety/extreme shyness" OCD? Just a thought as I noticced only one person stated their child had OCD prior to PANDAS but my daughter has a definate history of social anxiety/shyness, Hmmm...

p.Mom I think it would be safe to say that the majority of the manifestations started with diagnosed strep or a cold/virus, that could have been strep (undiagnosed).. Did you notice question #3 is tied, even! CRAZY! There are just as many families out there that have more than 1 PANDAS child than the families that have just one! This is fascinating to me!

How exciting! We will also be in DC , for the better part of next week, doing IVIG at Georgetown. Dr. Latimer is WONDERFUL! Make a plan, write down questions, as the appointment goes sooooo quickly! Good luck traveling! I never thought about hitting my congressman up for passes although we did have to hit him up for a letter to expedite our passports a few months ago, and it worked like a charm! Do the tour of the mint if you can, it's very interesting...I'm glad you're planning something fun into this all! Lynn

Hi Reactive, A GIGANTIC warm welcome to the "club"! You will find strength within this forum. If you ask me, you're pretty strong already to endure the years of frustration and heartache that comes along with your "membership". I second (or third, or fourth), the suggestions of the previous posts. Find a good PANDAS doc (where to you live)? Test, test, test, your child, your family members, ######, even your neighbors and your neighbors, neighbors (hehehe)! Eradicate the strep from everyone including your precious son and find the determination to not just "live within your nightmare", but conquer and win this battle! YOU CAN DEFEAT THIS! It's not easy, as you already know, but it is possible! READ, READ, READ, as many posts/topics as you can and ASK, ASK, ASK any and all questions. There are sooooo many helpful parents here. Lst but not least, keep the humor along with the faith (no pun intended towards faith's last post but it did make me laugh), you will need it to get you through! Good luck! Always here for you if you need me, Lynn

Congratulations Wendy! You've earned your honorary degree of "nerdyness"! Lot's of good information, (now that my brain hurts just from trying to absorb it all)! THANKS! Lynn