laurenjohnsonsmom

My apologies for the “sabbatical” from the forum as I’m sure most of you can understand the last six months for our family has been a roller-coaster ride and we felt it necessary, to allow our family peace and time to heal after Lauren’s success with her IVIG treatment in late February. For what it’s worth I have finally found a moment to tell “our” story-a story that the media is not allowed to edit. When did PANDAS first affect our family? Is anyone really sure? At a very young 22 months of age, Lauren had strep with the trunk rash (scarlatina/SF) and Mycroplasma at age 5-1/2. Right after the Mycroplasma Pneumonia she had this “unexplained” 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 had anxiety issues forever since as long as we can remember. 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 the micro-p) because she went 6 months in the school lunchroom without eating because of anxiety. All of these “signs” were excused until Lauren started the non-stop sneezing on November 1st, 2009. Looking back, all the signs are right there but we didn’t have a clue until November 2009 what we were looking for. The media exposure surrounding Lauren’s story definitely helped raise awareness in general for PANDAS. People all over the world wanted to know why the little girl could not stop sneezing. It was an oddity. We just wanted to understand what was wrong with our daughter and wanted her to be well. Dr. Nancy Snyderman helped put us in touch with Dr. Leckman at Yale University. Being well versed in TS, Dr. Leckman did not feel like Lauren fit into the “Tourettes box” we explored TS as a possibility as we were better understanding PANDAS and following that path as it became clearer to us that this was what was inflicting our daughter. It was about this time (mid November) we found this forum. Dr. T quickly reached out to us via email reinforcing what we already knew, deep in our hearts, that he believed Lauren had PANDAS. We decided, just a week before Thanksgiving, while Lauren was sneezing every other breath, to start Lauren on abx (azith 250mg). On day six of this abx treatment we doubled Lauren’s azith to 500mg a day and within 6 hours of increasing her abx her sneezing tic decreased in half! She went from sneezing 20-25x a minute to sneezing 10-12x a minute. We went to see Dr. T the day before Thanksgiving, 2009. He suggested we try a 5 day steroid burst to see if Lauren would show more improvement and suggested we keep her abx dose at 500 mg. From mid Nov. to mid Dec, 2009, we were also in the midst of running lab work, and a battery of tests including and EEG, MRI, and cat scans, etc. to rule out any other conditions that might be playing a role in this mystery. During the Thanksgiving holiday the steroid burst proved successful as Lauren began having her first “pauses” between sneezing. We saw 3-4 minute pauses when the steroid decreased the inflammation on her brain. Unfortunately, soon after the steroid burst ended, so did her pauses. This was to be expected as the steroid burst is only a diagnostic tool. As we started to see the results from Lauren’s lab work we noticed that Lauren’s IGg levels were dropping and she had fallen into the abnormal range. She had become immune compromised. This led me to search out an Immunologist to help address the immune issues we were facing. This path led me to Dr. Bouboulis. I will never forget our first phone conversation. It was the beginning of what is now a treasured friendship. He is a confidant and my partner in an organization aimed at helping countless children and their families navigating this disease. Dr. Bouboulis is a brilliant doctor who quickly tested our family’s aso/antiDnase titers to discover that even though Lauren never had shown a rise in her strep titers our entire family tested positive for strep. We have spent months on abx trying to eradicate the strep but unfortunately we are still trying to win this battle as my youngest daughter Audrey has had 4 separate rises in her strep titers/exposure over the last 5 months-UUGH! We have gone through great lengths (and many different abx) to try to eliminate the strep/break the carrier state in Audrey and our anxiously waiting to see if we succeeded recently. We re-test her titers again, next Monday. Dr. Bouboulis also treated Lauren with a 30 day tapered steroid to decrease inflammation in her sinus’ (where he suspected strep was harboring) and switched her the Augmentin during this same time period to see if she would show more improvement on a different antibiotic. We started the steroids on December 23rd and on Christmas Eve Lauren had 20 minute pauses between her sneezing that did not remain as we tapered her steroid over the next few weeks. It was after getting Lauren to a point where here symptoms were substantial improved but not fully eradicated and after seeing a positive response to the steroid, twice but not sustaining that improvement that we decided, with Dr. Bouboulis to do Lauren’s first IVIG treatment on February 17th. Lauren did well during this treatment with minor side effects and on day two of the treatment we watched in amazement as her sneezing diminished to almost nothing over the course of the second day of treatment. When Lauren woke up on Friday, February 19th she was “sneeze free” for the first time in over 14 weeks! Prior to Lauren's success with IVIG I hadn't slept in my own bed (without her climbing in with me) for months and I could not even go to the bathroom without her standing over me. I believe she had some improvement with the anxiety due to the steroids/abx, as far as the anxiety is concerned, (back before abx, 3 months ago, she would literally attach to my body, like a leech, 24 hours a day, she had to be "touching me" at all times) it has not eliminated her anxiety but lessened it, for sure. Six days post Lauren’s first IVIG she had a return of a rapid eye blinking tic that we previously had witnessed only a half dozen between 11/1/09 and her ivig treatment on 2/17/10. Her eyes went “crazy” with this machine gun type of rapid blinking. Her eyes dried out from the excessive movement to the point we had to add a lubricant. The next day she suffered from a 20 second catatonic state. It was scary but we knew this was part of the healing process where you don’t know exactly what to expect. I will tell you over the course of the next few the blinking lessened to a point where it was very infrequent but we knew it was still there. It was this blinking tic that was still not completely unresolved that led us to the decision to repeat Lauren’s IVIG again, just last week, eight weeks after her first treatment. We are now day five post-second-ivig treatment and all is well. She still has the infrequent blink. We are hoping the second treatment resolves this completely. Only time will tell.

T.MOM Ten days ago Dr. Bouboulis and I met with a producer for Dateline and the executive producer for the "umbrella" Production Company that does stories for all smaller cable channels such as a&e, discovery, discovery health, etc.. We signed an exclusive agreement for them to do a documentary (doesn't legally bind them to do it but gives them first right to do one, for the next 12 weeks). We have spent a total of 6 hours (between Dr. B & myself) talking to the people who reasearch and present this story to the "higher-ups that be" and were told that it looks VERY promising that this documentary will happen but do not have a final decision, yet. Please say a prayer. This will be good exposure (more than a 6 minute piece about just one PANDAS case ie: my daughter; but a broder look at the disease). If any parents want to send an email to me with a plea to why this needs to be done I will be happy to forward them to the producer as a group. (as I obviously cannot disclose her email). You can email me through the PANDAS RESOURCE NETWPRK website info@pandasresourcenetwork.com or laurensneezing@gmail.com Lynn

FIXIT, You have my vote for "official party planner"!!!! BTW, the "boats" not going anywhere without you!

On the subject of the AutismOne conference. I did want to mention that Dr. Bouboulis will be there as well. I did a little "arm twisting" (actually didn't take that much twisting as he is so eager to connect the doctors together). He will not be presenting BUT will be taking part in the PANDAS think tank with the other physican's/researchers.

I would like to clarify a few things.. I was asking for parents to come forward and to participate in putting this lecture together so in the end it would cover the wider spectrum in how this disease manifests so differently from one child to the next. My goal was to collaborate so this would be about “all of our children of PANDAS”. This was NOT a plea to the fact that I didn't know what I was doing, or to please suggest another topic speaker. In the end, I think this will turn out great and I want to thank the enormous number of parents who have already emailed with their support and suggestions on how to make the biggest impact with this presentation. I do not know if Diana P is speaking at this conference or any other for that matter. If she is, that's great. I am already committed to co-lecturing with Dr. T. The more speakers we have the better. I believe there are quite a number of patents and doctors/researchers already speaking. That's my opinion only. I'll be the first one to agree Diana has spent endless hours helping parents in person and through her website. She was not the first and I will not be the last person to spend endless hours in a day, seven days a week, in this battle to bring awareness and change to the face of PANDAS. Like I have said before, we are all in this “journey” together. We have the same “destination”, getting are children well. We might take different paths (different doctors), we might hit different or more road blocks than others (setbacks), and for some the journey will be longer than others BUT we need to support each other so we can make it to the end of the journey, some day. The same applies to how we are all trying to bring awareness and change, we have the same destination in mind. We are just taking different paths/approaches to get there. We should all support each others efforts. I have personally had over 14,000 emails sent to me personally or through the today show since last November. I have replied to a couple thousand and I have personally spoken to at least 150 families affected by PANDAS (most who never have been on the forum, some who are here now). I'm guessing for ever one active PANDAS forum parent there are a thousand just observing what we post here. We started in the media trying to understand what was inflicting my daughter but ended up bringing hundreds of families along the journey in finding answers. For that I am grateful that this media attention will help many. It already has helped some return back to a functional place. That's really cool! Again, just my opinion! I recently gathered with a group if PANDAS parents to put together a resource/organization to use our recent media exposure to best help all our families. We spoke of a non-profit "group" to help fund Madeleine Cunninghams research and to educate the medical community so as parents we could some day find help in our own back yards. Diana was included in these discussions and asked to participate. She was and is always welsome. She has, for now, decided to keep doing what she's doing with the families she's working with already, separately from this mission. That's great! She has the right to make her own choices. She fills a need within this community but there are lots of needs to be filled with and "guess"timsted 500,000 children who are currently misdiagnosed or undiagnosed with PANDAS. Beth Maloney's organization fills another need and I respect what she's doing as well. There is room for us all and I am thrilled that in the end we all have the same common goal which is to help other people. No one has right to criticize that effort until you have walked a mile in our shoes (warning..wear comfortable shoes)! This will be the first AND only time I will discuss what Diana (and/or Beth Maloney's or any other parent for that matter) is doing to help with the cause. I have concerns that a few may "ruin it for the rest of us" this if posts start getting deleted by moderators/administrators because we cannot respect and support each other. We need to keep this forum as a place for encouragement and support so EVERYONE feels welcome. Anything else can be discussed via PM We need to do this for our children's sake! Lastly, I just ask that you realize that you realize how emotionally, physically and financially exhausting the last 5 months has been for my family. You all know what we are going through as you are or have gone through it, as well. Add on the non-stop media exposure and the numerous other projects that we are hoping will help all our children, soon and it is overwhelming, to say the least! Since we just finished IVIG, my daughter and our family needs time to heal, which means that for the time being I might not be as active within this forum as I would like to be but I promise even if she completely recovers from this, I'm not going ANYWHERE until ALL our children are well. That is NOT my opinion but it is my promise! A good friend recently told me (who happens to be one of my daughters wonderful doctors)..When God takes something from your grasp, He's not punishing you, but merely opening your hands to receive something better.. 'The will of God will never take you where the Grace of God will not protect you.' (I just wish he didn't have to make the ride sooooo long & bumpy)! There comes a point in your life when you realize: Who matters, Who never did, Who won't anymore... And who always will. Don't worry about people from your past, there's a reason why they didn't make it into your future.. Always follow what's in your heart, it will lead the way! Wishing you all "less bumps" in your road to recovery. Lynn

Hi Peglem, Sorry, we have been traveling "cross country" for IVIG. Lauren did well with IVIG. Really BAD headaches between day one and two. Moderate leg cramps (flu like aches) but for the most part, she was a trooper! We are doing well post-ivig but are carefully monitoring her. I know this will be successful for her (to the point where we can lessen if not elimate the current manifestation and get her back to a functional place). Dr. K say's it takes 2-3 weeks to see real results, especially with the older children (Lauren is almost 13). I cannot say enough about how brilliant and compassionate Dr. B has been to us. Thank you for asking... Lynn

So….I am trying to prepare for the AutismOne conference and Dr. T and my presentation will be, "Not so Black and White: The Many Faces of PANDAS" The black and white is a pun on the bear. The theme of the talk is that PANDAS is not just tics and/or OCD and positive throat cultures but can be weird things like repetitive sneezing; you've got to think outside the box. Dr. T will cover the “medical side”, I will touch on the human impact. I REALLY want to emphasize the broad spectrum that this terrible disease manifests in ALL of our children differently. I was thinking of doing a slide show of sorts (candid pictures of our children) with some sort of association i.e.: maybe a caption of how long they have been suffering, or a quote from mom or dad (if you could say one thing what would it be?), or your child's main symptom(s). Wanting to emphasize in a very creative fashion as many families/children as possible, no identities involved. Food for thought. Comments and suggestions appreciated. It’s soooo frustrating that no matter how long I do an interview within the media, no matter how much I talk about PANDAS and the wide spectrum of symptoms occur within these children, how sick some of these children are, I have NO control what the “end result”, the 3 minutes or less that ends up on the television. One good reason I am grateful for this conference opportunity, to have some control of the end result. If you are interested in helping. Please email me at laurensneezing@gmail.com I know my presence here isn’t what it used to be but I have been putting in long hours working on getting our daughter well and also have been working with some of the wonderful parents here on the forum along with our brilliant doctor(s) on a couple of pretty large projects that will hopefully help us all navigate through this disease easier than we have in the past. Wish us luck! We will need it (and tons of help, too), soon! People are listening; I truly feel we will see some big advancement in awareness and research soon. I am forever appreciative to my friends here on the forum. Lynn

Without a doubt..absolutley! (1.5g/k or 2g/k over two days as I don't think you get the same good results at a lower dose).

Maybe we can broadcast it on pay-per-view and use the money raised for Madeline's research!

My comment was refering to the doc's concuring that 1.5g/g seems to effective based on what they are seeing from the kids getting this dose, recently. I believe that is the dose they plan on using in the upcoming ivig study. The hemo oncology doc's at Georgetown who administer Latimer's IVIG told me that they do 1g/k a day, for everyone. So if she had you only do it for one day instead of two, that would make sense. Do you mind if I ask why you only did it for one day? How long ago did you have it done? Seems like the "trend" is leaning towards 1.5g/k over two days but some doc's, until recently were giving a little less but more often.

1.5g/k over two days has been proven effective by many doctors, (Dr. K, Dr. B, Dr. Swedo and many more of the "less-than-talked about" PANDAS doc's). I have been told this personally by many of these doc's. IVIG is used in many auto-immune disorders with great success. It is ONLY my opinion that anything lower than 1.5 is not very effective, long term. You might find success with many more frequent treatments but not the same as the high-dose treatments. You can do 2g/k, over two days (that is what Latimer does at Georgetown) but it is done in the Hemo/oncology dept, under careful supervision. There is relativley low risk with IVIG but your risk of complications do rise with the rise in dosage and how fast it is administered. I know there has been other threads that talk about this same subject recently, somewhere..

I had my tonsils removed in the 9th grade of High School after missing nearly the entire year of school with chronic infections. I have been compiling all of my children's health records, going through them with a fine tooth comb, and I am SHOCKED by all the strep related visits (diagnosed or not), both my girls had step with the RF rash when they were both around two years of age. In Sept. 2006 all three of my children had strep (but my dd who was 6 at the time and was the only one to test positive on the rapid culture) within two weeks of that doctor's visit we were in the ER having a emergency psych eval done on our ds (13 at the time) due to overnight on-set of rages/mood liability, ocd rituals, etc.. The sad part is that the Dr. prescribed abx for all three of my children because they had rash, high fever and sibling was positive but had me discontinue it two days later when 72 hour cultures came back neg on my other two children (even though they were symptomatic). No ASO or AntiDnaseB ordered-NOTHING! I can't tell you how many times we went to the doctor with unexplained urinary frequency issues with both our dd's after the sept. 2006 strep infection. We were sooo up to our eyeballs dealing with our ds that I didn't even remember this until I went through the medical records.

Diana, I could not have said it better myself (nor do I have time these days in the middle of IVIG treatment/traveling). Thanks for the information packed post! We are the pioneers regarless if we like it or not. We are learning with the doctors and we go along. No one has the exact answers right now. Who's hiding the "easy button"! Lynn

Wendy- Right there with you! (actually we're shooting for more like 110%)!!! Lynn

AMEN! Especially with PANDAS because not enough real research has been done and the little that these great doctors do know re: what works and what doesn't is thru trial AND error! One of these great doctors who is so carefully trying to help our famly just wrote me the following response to a general queston surrounding IVIG.. "Your question is just the sort of question the Drs. are asking themselves. From my perspective, we do need additional randomized controlled clinical trials to judge IVIG's benefits on a well characterized group of children with PANDAS. That should help resolve some of the controversies surrounding this disorder." As parents we have to make the final decision in what treatment we do with our children and are ultimatley responsible for those decisions. These are decisions we make after we educate and understand as much as we can and what is known at the point where we have to decided what the next step is in searching for resolve. I don't believe it's a hasty decision any Dr. or parent makes and it is also holds no guarentees. If we have success or failure many parents and Dr.'s will learn from that and it's the best that we have until more reasearch studies are done. I am just so greatful that there are some doctors out there willing to help so many families who are the pioneers in this medical journey. I think I posted this earlier so my apologies for repeating myself... 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, it's for sure a "bumpy ride" with rough seas but our destination is all the same. Let’s not “rock the boat” but instead, unite and conquer! I really believe as parents with the help of these doctors we will win our children back from this horrible disorder! I totally agree with you (and your dad)! An example would be how certain docs have changed their protocols within the past year...becoming more aggressive with antibiotic doses and type (more full-strength/high dose, more augmentin xr/azith). Nobody has all the final answers. It's the truly great doctors that will look back on what has and has not worked and be willing to change and adapt and grow.

wornoutmom I know for sure that Dr. K likes to see it written out just as you prepared it for your Dr. L visit because he just requested this from me. Dr. K is going to try to understand how this is/has impacting/impacted our whole family, not just Lauren (genetic connection, specific strain connection, maybe). So I have been spending every spare minute compiling medical history x3 I will use the medical records as reference points of the summary I prepare. He looks at all of this before doing a phone consult or meeting him in person. I agree with you that it's easier to lay it all out on paper..good luck. Lynn

add tea tree oil to her shampoo and wash her hair, everyday with it! Not only will this help prevent lice from invading the hair it also helps if she does get it! This is from my OCD experience when we got the "letter", years ago!!! We never got lice but boy did I research it and dud every preventitive measure!!!! You can get tea tree oil at almost any healthfood store/vitamin shop. Shampoos are made with tea tree oil but nit enough to be effective... Hope this is helpful.. Lynn Good idea!

Yeah, Dr. T!!!!!!!!!! I will be happy to give you a free second opinion by phone anytime you wish Dr. T

P.Mom, Since you are so confident that "faith is right", you must know something. Please elaborate/fill in the details.

(double post)...sorry

Maybe she's just overworked and overwhelmed and us losing focus and good judgement. Unfortunatley it's the children who suffer...she (dr. Latimer) is going through some rough personal issues NOT that i'm making excuses... Maybe someone pisssed her off and ruined it for the rest of us.......... sorry wornoutmom, I know you are having a setback here, but you will find help for your child. where do you live, I may have some suggestions. blessings Faith

Do you care to share which doc's told you not to bother testing the family? These weren't PANDAS doc's were they?

Sonebodys typing faster than I am..ok, so I'll be the "second" to tell you to get a second opinion!!!!

I am going to be the first to say "get a second opinion"....possibly Dr. K.

coco, Be nice! I know your "secret identity" and where you live! :lol (and I won't be to far from you in two weeks) Lynn [ quote name=coco' date='Feb 2 2010, 05:36 PM' post='54316] Don't see myself as "the lecturer".. Now that's funny! LOL!