laurenjohnsonsmom

When are daughter manifested in late October, the first doctor/team we saw was James Leckman at Yale University here in the states. He was VERY interested in Mycoplasma pneumoniae, and tested our daughter immediatley and ruled it out. I would encourage you to contact him. He knows EVERYONE! On your comment regarding Sue Swedo...we got the same cold sholder, the same exact way you did! 36% of all children with strep NEVER get a rise in their ASO (strep) titers! I just found out over the last few weeks, as our entire family has had lab work completed, that we ALL have/had elevated ASO titers that coincide with our daughters recent manifestation of her sneezing tic!! My DD who has this awful tic is the only member of our family that doesn't show a rise! Stay strong, stay focused! You will find your answers! Best of luck to you and your family. Lynn

That makes three! Just got off the phone with Dr. Bouboulis discussing our famlies lab results. My 10 yr. Old, DD2, my husband and I all have elevated/positive strep titers which coincide fallen with the timeframe associated when both girls were sick back in the end of October...crazy!!!

Bummer...I HATE tics! Hey Michael -- I'm not sure, but I think we qualify as "chronic." Son diagnosed with OCD at 6, waxes and wanes (or exacerbations) throughout the last 6 years and only moved on to PANDAS about 4 months ago. We are about to begin our third month-long dose of abx, and we ARE seeing improvement . . . slow, saw-toothed, but improvement nonetheless. I think you're right though . . . I feel like these are "tougher nuts to crack," maybe because the duration of their illness (and early mis-diagnosis) has permitted the strep to go intracellular? Maybe because the brain has taken on some more permanent configurations or accommodations during the illness prior to abx intervention? Maybe because the associated behaviors have become more ingrained over the extended time period, so even once the physical issues are addressed, it takes longer to turn back the clock on the learned behaviors? I'll be interested in hearing what Buster has to say, also!

We have recently spoke with both the PANDAS doctor and her immunologist regarding Lauren's increase in her sneezing tic coinciding with the decrease/taper of the steroids (she had substantial improvement initially with the 30&25mg but no sustained improvement with the decrease). They both suggested that plasmapheresis and ivig (back- to-back) in the near future, could be helpful, but neither can do it. We have made an appointment with Dr. Latimer next Wednesday, as she is the only doc I know if who can do both. Has anyone else done PEX/IVIG back to back and the result? Lauren also started to have severe stomach issues..just in the last few days, today being the worst. I gave her a prilosec (dr. B's suggestion)., along with adding another probiotic. She also take Aloe Vera extract and Olive Leaf Extract. We seem to now have it under control but any other helpful advice (besides common sense suggestions ie:take with food) would be appreciated. She is on week three of 875mg Augmentin and a 3 day tapered steroid treatment. I also want to add that Lauren has low (below normal) total IGg and failed (had negative result) on most of her pneumococcal titers which also helps her qualify. I hope all is well with you and your family..

Soooooooo, if you were trying to get your insurance company to approve IVIG/PEX what...."Well-controlled studies of clinically meaningful endpoints, published in refereed medical literature, Published formal technology assessments, Published reports of national professional medical associations, Published national medical policy organization positions & Published reports of national expert opinion organizations", would YOU use as supporting information??? Does anyone know the new 2010 diagnostic codes for IVIG/PEX??? (The following is from our insurance website)... Covered Services TRICARE covers most inpatient and outpatient care that is medically necessary and considered proven. However, there are special rules or limits on certain types of care, while other types of care are not covered at all. This section provides details about services that TRICARE covers, limits and excludes. This is a guide to your TRICARE coverage - it isn't all-inclusive. Some services or treatments require prior authorization. Your coverage and out-of-pocket costs are dependent on your eligibility as a TRICARE beneficiary and may vary according to the program option you're using. Contact your regional contractor or TRICARE Area Office for more information. WHAT IS COVERED... Appropriate and necessary treatment of a beneficiary's illness or injury according to accepted standards of medical practice and TRICARE policy. Medical necessity must be documented in clinical notes. By law, Title 10 U.S.C. Section 1079(a)(13), TRICARE may only pay for medically necessary care. This statute has been implemented by the Code of Federal Regulations (32 CFR 199.4), which states that TRICARE will pay for "medically necessary services and supplies required in the diagnosis and treatment of illness or injury." Therefore, TRICARE can cost share only medically necessary supplies and services. Benefits are restricted to those drugs, devices, treatments, or procedures for which the safety and efficacy have been proven to be comparable or superior to conventional therapies. The definition of reliable evidence in 32 CFR 199.2( (which is also included in Chapter 1, Section 2.1 of the TRICARE Policy Manual [August 2002 edition]) provides the TRICARE hierarchy of reliable evidence used to determine whether a drug, device, medical treatment or procedure has moved from the status of unproven to the position of nationally accepted medical practice as follows: 1.Well-controlled studies of clinically meaningful endpoints, published in refereed medical literature 2.Published formal technology assessments 3.Published reports of national professional medical associations 4.Published national medical policy organization positions 5.Published reports of national expert opinion organizations.

Well said..we're all in this together! What a great bunch of intelligent, resourceful, helpful and kind people that you all are here. I don't know where we would be without ALL OF YOU! That's why this forum is so helpful and usefull, it brings people together for the greater good! THANK YOU!

I have said it once on this forum and I will say it again. The video clip of my daughter reading "saving sammy" on the Today Show WAS NOT a set up! We were given the book by a staff member while we were at NBC studios that day-literally 10 minutes before they asked if they could shoot some video of Lauren "just being Lauren"! Lauren loves to read, so she immediatley picked the book up and started reading..what they did with that video clip is beyond are control. Up to that point I did not even know who Beth Maloney was nor did I know she wrote a book about PANDAS. The first time I heard the word PANDAS was that day! Sorry..to disappoint anyone who thinks it might have happened any differently. The rest is history. Glad I don't have a facebook page regarding..YIKES!

Faith, I sent you a PM. We are all filled with emotion (and most..a severe lack of sleep, also). Sometimes what we say comes across wrong and that we all need to be conscious in how it may be interpreted. Even when we all mean well we need to think twice, speak once! We are ALL in “the same boat”, just in different parts or the journey, for some it may take longer to get there, there may be "detours" along the way, (unfortunately, some more than others), we might take different routes, but our destination is all the same. Let’s not “rock the boat” but instead, unite and conquer! We also need to think twice about what we should “post on the forum” and what would be best served as a personal message sent. Peace! Lynn

I guess "we're on the same boat" as Lauren had urinary frequency between age 6 & 7. Lasted for months. no UTI or bladder infection..Hmmm. I quess the three of us are idiots for not knowing about PANDAS way back when...I will stop here before I say something "not so nice" to someone "not very nice"... That is very interesting - our story is nearly identical. Age 3.5 - sudden obsessive handwashing, sep anxiety, fear choking, contaim fears - 2 weeks later, antibiotics for ear infection, 2 weeks later, all is fine. First week, we thought she had allergy to soap, 2nd week we knew something was wrong but seemed like anorexia & depression (which how can that be at 3??). 3rd week we were doing ERP and antibiotics, 4th week it was nearly fine just ERP, then 5th week, it was like it never happened. Then nothing for 3 years, until all ###### broke out in late May 2008. Wierd. We did call it PANDAS at 3.5, but no one agreed at 6, and we gave it up for a stupidly long time. 2nd episode untreated except for antibiotics for a week in the middle, lasted total of 3 months. About 6 weeks of which were really bad. 3rd episode untreated except for inital ear infection - lasted 5 months, but there was an impetigo exposure at about 2 months that was a huge uptick and was really bad for another 6 weeks, and then trending down again, and much helped by antibiotics towards the end of month 4. We always do ERP.

We haven't ruled out that vaccinations haven't played a part or that they might have something to do with the tic she has now. As we explore her past, there seems to be some evidence that she had an episode between the age of 6 and 7... If that is the case, than she is one lucky girl.... she has no ocd, no other issues up till now at 12 yrs old, then how could she have had PANDAS episodes in the past? I would think something would have been noticed. ... Does anyone else feel the vaccinations played a part? No one reporting this story is going to put that out there. I beleive its a good a possibility as any and also deserves equal attention from the media as PANDAS does.

Cam score was 144. Her ASOT was done too soon to show a rise. We will be repeating it tomorrow. We will also be checking for vaginal/peri-anal strep. Some don't ever have a ASOT rise (ie: busters daughter, even though she had a positive throat culture). If Faith keeps such well track of these things she should have known that! My trust is in Dr. Trifiletti, Dr. Leckman & Dr. K... What I'm confused about is that the mother said she had only a cold in the weeks before. she told us herself that she was negative on strep. If doctor is giving her abx, it is just as a trial, I don't really see how she could be "diagnosed" as this is only one episode. If she doesn't have a current strep infection, I'd be surprised if the abx eradicated this girl's tic, the same as for many of us here who have had symptoms for some time now. Some may not agree with me either, but for me, it was the Gardicil and the Dtap vaccines (double whammy) that she got in the months before that triggered her sneeze/vocal/tic. I've been on these boards for years and hve tracked alot of information given by the parents here, I know this has happened to several here. I don't ask question after question for no reason. I got a book yay thick. Faith

just maybe...

I'm always here..just can't seem to find the time to participate on the forum while focusing on getting Lauren better (and all the media attention). I have directed so many parents who have contact me regarding to this forum. We would not be where we are in this journey if it wasn't for the doctors and ALL OF YOU PANDAS parents offering us support and knowledge so that we can make educated decisions regarding Lauren's treatment. THANK YOU! Trust me, this is just the start of the media attention. I cannot go into detail at the moment but stay tuned! Lynn "be the change you wish to see in the world-Ghandi"

Ditto...a great big virtual hug.

You took the words out of my mouth. If you read the few case studies on intractrable psychogenic sneezing (and when I saw few I mean less than ten in the last 60 YEARS), this doctors will try to convince you that they had some sort of "emotional stressor" or trauma. Whatever! That is just heart breaking and I hope you and your brave daughter did something to change that. I suspect you did. I wondered what the "40" known cases referred to in the segment, was about. Psychosomatic or intractable psychogenic sneezing? Wow, it's just so wrong that that was even suggested at this point! I wonder how many cases of "intractable psychogentic sneezing" were actually undiagnosed PANDAS (or other tics)?

I'm tired, so I will make this quick..Quick strep on Lauren was negative. Had them do TWO 72 hour cultures just to make sure. Cat scan and MRI were done without any sedation and she did great. EEG went well, she was even able to fall asleep at Noon so they could do an awake and sleep study.Blood work is complete and we spoke to Madeline Cunningham and she going to test her blood! Lauren has no other tics up tp this point. She was figiting with her shirt because it "rides up" on her when she sits. She had an undershirt on when they ran the mic up her shirt and i think it got it discomboblled (I know that's not a word)! I did catch her "rapidy blinking" for a shrt period, tonight. Anyone else every experience this? The tv show "The Doctors" are going to be doing a segment on Lauren's story but we are not going to participate in it. Our local news, Wavy News 10, did a follow up story at her EEG and I made them promise to make reference to PANDAS and THEY DID!!!! http://www.wavy.com/dpp/news/health_news/S...gets-sleep-test Hopping a plane up to New Have in the morning. I will log on tomorrow and try to update! YOU GUYS ARE THE BEST!!!! Pixie is so awesome!! Maybe you can convince her to be a MD that treats PANDAS kids when she grows up!

I wish I had more time to contribute to this board. Spent all day at more Doctor/psycotherapist appointments. Lauren needed a hairct then we raced back home to met her new tutor, who just left at 9 pm. My children are having dinner at 9:30 pm. I am the worlds worst mother! Last night and today have been extremley hard emotionally for both Lauren & I. The cracks are starting to show. I need to find more hours in each day.. We go to CHKD tomorrow morning at 6:30 a.m. for Lauren's cat scan, MRI and the 1st blood draw. (they have to do three seperate blood draws because they can only take so much blood from her at one time). Than at 11 a.m. and EEG. I had to pick up a heavy sedative at the pharmacy to bring with us in case the "snough" (1/2 cough, 1/2 sneeze) tic make her move to much-than she will have to have the sedative. To those of you who wrote me at the laurensneezing@gmail.com address. I just got those emails today, even though I set the account uplast Friday?? I will respond to you all soon. I am so tired! I can't even type! Thank you again for all the helpful resources and words of wisdom (& hope). to be continued..

Just tried to watch the Health Alliance Video-say "page no longer exists??

Why would be in denial that our daughter has a tick? Her tick actually started as a real productive sneeze and had evolved into a tic that comes from her mouth and nose.

WOW! I'm full of emotion! I can't believe how support and helpful you have all, been! I cannot find enough words to express our familly's gratitude. I am going to try to continue to answers as many of your questions in one GIGANTIC post..here it goes! Lauren has had ZERO "OCD behaviors" in the past; she has always suffered from "moderate social Anxiety" which runs deep through my husband's family. My husband suffers his sister, his father, etc..No history of Urinary frequency, OCD or sensory defensiveness. Lauren just turned 12 years old. I might note, until last year, Lauren was hardly ever sick. Last year, though she missed 26 days of school because she was sick, multiple times. I can't recall, (I am in the process of getting copies of her medical records), but I believe she was tested for strep at least once, and I believe she tested positive at least once, last school year. Lauren also received two inoculations/vaccinations in the last 6 months. Guardisil & her T-dap which is required by our school district prior to entering 6th grade. Until last year, Lauren was healthy, reached every developmental milestone, and is a bright, young lady. I also can’t help but think that this has some relation to gender and hormones. Why? Because case report I have read concerning “intractable sneezing” always involves female gender and they fall into the 10-15 year age group. Lauren is “becoming a lady” and has had “hormonal changes” to her body, but has yet to start her menstrual period. Information on intractable sneezing is impossible to find. If any of you would like copies of the information I have, please send me your address and I will put it in the mail to you. “Like others have said, I would also encourage you to have your dd's serum tested at Dr. Madeleine Cunningham's lab (Univ. of Oklahoma) when it re-opens in January (the lab is currently closed for the holidays).” I am so disappointed to hear that Madeline’s lab is closed! Dr. Leckman and I just discussed her lab and we were going to send serum to her on Monday. Somebody please explain to me how she and her lab plays a part in all this! “I just wish docs like Leckman, Nicoletti, Latimer, Swedo, etc... would be much more vocal and assertive about PANDAS!” On the subject of Dr. Lechman. I don’t believe his likes to be in the media. Even if it helps bring awareness. I have never met him in person, yet but have spoke to him numerous times at great length. Maybe we need to let them do the research, utilizing thier strentghs and WE, the mom's that are so passionate in finding the answers and raising awareness should spearhead a campaign. That is OUR strength! “Beth Latimer, a pediatric neurologist in Bethesda, MD, who treats kids with PANDAS and has been helpful to many of us on this forum. You have done an amazing job of seeking out help and calling attention to your daughter's story and I believe you are on the right path to getting her well.” I will be calling her office on Monday. You can bet your “britches” on that! “We also did a perianal culture on our PANDAS dd and that was also positive (girls can also get vaginal strep). Sometimes cultures are neg. but strep is hiding out in places that aren't easily cultured (like the sinuses).” Hmmm...good point. We were vacation in the Florida Keys, early this summer and Lauren complained of a “burning sensation” when she went into the pool and/or ocean, etc..Not when she urinated, like with and UTI but just overall discomfort. Think it could be related? I am grateful we have the “media’s eye”, for everyone’s sake. This is so much bigger than my daughter. It’s about everyone out there, especially those who are still “lost”, like me, just a week ago. Even if Lauren is diagnosed and cured overnight (ok, maybe that’s too hopeful), I am determined to fight to keep this exposure/momentum, so more people can find answers and recourses faster and easier. I will move a mountain if that’s what it takes! I am trying to find balance here and I appreciate if you can lend your advice. As mothers...Lauren’s story has grown into a world-wide interest piece. It is everywhere! I have been contacted by the media, all over the globe (i.e.: Germany, Australia), not to mention all over the country. There are some good “daytime talk-shows” if that’s what you want to call it, who have contact me to have myself and Lauren on their show next week. I want to do them, because knowing what I know now, I want this exposure, not just to find as much help for my own daughter but to get the word and keep it out re: PANDAS and the other disorders possibly related to what my daughter is experiencing. What would YOU do? We will also be visiting Dr. Leckman late next week also, so I know I’m trying to shove 20 lbs. of potatoes in a 1 lb. bag...

I also wanted to let you know that I spoke with Beth, "Sammys" mom, at great lengths, yesterday and Lauren and I will be meeting with some specilists next week. I am in the process of creating a blog so that I can keep everyone informed of our progress. I will let you know of the link when it's up and running. And, yes Lauren's "sneeze" is more tic like, 1/2 cough and 1/2 sneeze but I do want to emphasize that is started as a true productive sneeze with a head cold at onset, a little more than 3 weeks ago and has evolved to what you cuurently see in the media segments. Also want to send a huge hug and thank you to Carol Sidofsky in Winter Park, CO., until last Tuesday, she did not know my daughter or myself even exsisted, it had been through the enourmouse time and effort she has put forth researching and trying to help us that we have found this forum.

Just posted this reply on another thread in reference to my daughter.. and here I am... I feel the need to clarify a few things.. The first time we have ever heard the acronym "PANDAS" was late last Monday evening when a mother of my daughter’s classmates saw our local TV station cover Lauren's story. Prior to that we had been to see the director of the pediatric neurology clinic at CHKD hospital and the Pediatric ENTS at CHKD, been to our regular physician a hypnotist and psychotherapist, many, many times over the last 3 weeks. NO ONE MENTIONED OCD, PANDAS, STREP VIRUS, etc in this process. We were routinely told that is was psychosomatic or intractable psychogenic sneezing, which trust me, if you research, Google, etc..you find VERY LITTLE information besides that it is a VERY rare disease with only 40 reported cases in the last 60 years! Our local “specilists/physicans” knew nothing about this! Out of pure frustration over not finding any specific information on this topic and a trues mothers love for my daughter to move mountains to help her (I can even begin to tell you how helpless I feel right now), I sat down last Sunday morning and just stated emailing EVERYBODY! Oprah, Dr. OZ, Sanjay Gupta, my local news channels thinking maybe someone would contact me and say they new of someone that could help. NEVER could I have imagined what would have taken place, the next morning and since then. Beginning at 7 am, Monday my phone started ringing from all three of our local television stations. They wanted to do a segment on my daughter and our frustrations with finding answers and they did that, I believe with grace and sensitivity to our family. Within 12 hours of the local story appearing on TV Monday evening, we were contacted by all three major networks/morning shows asking us to be on the show the next morning (Tuesday morning). Coincidentally, I was yet at another appointment with Lauren with the pediatric ENT at CHKD who was trying to convince me that "this was all in our daughters head, that you should go home and tell her I found the magic cure for her, lie to her use trickery, then come back to my office in a few days and I will squirt saline up her nose and trick her out of it"! Hard to believe isn't it? I don't blame the doctors, thus far. I think they were trying to help, they just didn't know how. We had already been encouraged by other local physicians’ who had tried to help Lauren to seek out media attention to find anybody out here who could help because they had no answers and did not know who to refer us to. It was at that moment, as I stood in the parking lot of the children's hospital, full of emotion. frustrated, mad, disappointed, hopeless, helpless that the local reported contacted me and said the Today Show wanted to cover my daughter’s story and wanted to help us find us somebody to help her. The rest is “media history”. The irony here is that WE DON’T watch TV! We have 11 televisions in our house but with the exception Lauren’s fascination with cooking and animals and the Food Network/Animal planet, that’s all we watch! If you would have asked me who the host’s of the Today show was or who Nancy Snyderman was, three days ago, I would have been unable to answer. I sit here physically and mentally exhausted while writing this post. The media attention my daughter condition is getting is incomprehensible. I can tell you that it has opened doors for us to get in touch with Dr. Leckman and others who can possible help my daughter. We know that there are SO many other families out there who have suffered and are suffering and will suffer through what we are experiencing right now and I am determined to not only help my daughter but help every parent and child who is trying to find the resources they need to correctly diagnose and treat their child. I know you will never hear the “whole story” in a 7 minute or less segment on national television but I hope I have helped answers your questions. I know you all are just trying to help my daughter and we thank you from the bottom of our heart. You may contact me directly at laurensneezing@gmail.com

and here I am... I feel the need to clarify a few things.. The first time we have ever heard the acronym "PANDAS" was late last Monday evening when a mother of my daughter’s classmates saw our local TV station cover Lauren's story. Prior to that we had been to see the director of the pediatric neurology clinic at CHKD hospital and the Pediatric ENTS at CHKD, been to our regular physician a hypnotist and psychotherapist, many, many times over the last 3 weeks. NO ONE MENTIONED OCD, PANDAS, STREP VIRUS, etc in this process. We were routinely told that is was psychosomatic or intractable psychogenic sneezing, which trust me, if you research, Google, etc..you find VERY LITTLE information besides that it is a VERY rare disease with only 40 reported cases in the last 60 years! Our local “specilists/physicans” knew nothing about this! Out of pure frustration over not finding any specific information on this topic and a trues mothers love for my daughter to move mountains to help her (I can even begin to tell you how helpless I feel right now), I sat down last Sunday morning and just stated emailing EVERYBODY! Oprah, Dr. OZ, Sanjay Gupta, my local news channels thinking maybe someone would contact me and say they new of someone that could help. NEVER could I have imagined what would have taken place, the next morning and since then. Beginning at 7 am, Monday my phone started ringing from all three of our local television stations. They wanted to do a segment on my daughter and our frustrations with finding answers and they did that, I believe with grace and sensitivity to our family. Within 12 hours of the local story appearing on TV Monday evening, we were contacted by all three major networks/morning shows asking us to be on the show the next morning (Tuesday morning). Coincidentally, I was yet at another appointment with Lauren with the pediatric ENT at CHKD who was trying to convince me that "this was all in our daughters head, that you should go home and tell her I found the magic cure for her, lie to her use trickery, then come back to my office in a few days and I will squirt saline up her nose and trick her out of it"! Hard to believe isn't it? I don't blame the doctors, thus far. I think they were trying to help, they just didn't know how. We had already been encouraged by other local physicians’ who had tried to help Lauren to seek out media attention to find anybody out here who could help because they had no answers and did not know who to refer us to. It was at that moment, as I stood in the parking lot of the children's hospital, full of emotion. frustrated, mad, disappointed, hopeless, helpless that the local reported contacted me and said the Today Show wanted to cover my daughter’s story and wanted to help us find us somebody to help her. The rest is “media history”. The irony here is that WE DON’T watch TV! We have 11 televisions in our house but with the exception Lauren’s fascination with cooking and animals and the Food Network/Animal planet, that’s all we watch! If you would have asked me who the host’s of the Today show was or who Nancy Snyderman was, three days ago, I would have been unable to answer. I sit here physically and mentally exhausted while writing this post. The media attention my daughter condition is getting is incomprehensible. I can tell you that it has opened doors for us to get in touch with Dr. Leckman and others who can possible help my daughter. We know that there are SO many other families out there who have suffered and are suffering and will suffer through what we are experiencing right now and I am determined to not only help my daughter but help every parent and child who is trying to find the resources they need to correctly diagnose and treat their child. I know you will never hear the “whole story” in a 7 minute or less segment on national television but I hope I have helped answers your questions. I know you all are just trying to help my daughter and we thank you from the bottom of our heart. You may contact me directly at laurensneezing@gmail.com