laurenjohnsonsmom

Meg's Mom, Are you using Augmentin and refering to the Clavulinic acid as the successful antiinflammatory? Confused? Edit - ok, it took me a few hours to get this posted while working (who me?) and I see that you have answered this. Thanks! Hey Alex - can I ask about the comment from Dr. K - because that is something that I worry about a lot, and yet struggle to justify. I am referring to the "no cure without IVIG". We have clinical diagnosis of PANDAS, classic signs, but no positive ASO/strep, onset with ear infection each time, positive CamKinII, high ANA that goes down with antibiotic treatment. Almost subclinical on Pred Burst, subclinical with antibiotics (Azith). 2 Mild episode completely treated with Azith increase (one for 8 days, as I waited for 3 days, then next for only 2 days, as I treated IMMEDIATELY as the mom suspected strep coincidental to very mild uptick in compulsions). We are only 5 months in remission. So, I can't see justifying IVIG when we are at 99% - and we don't qualify for insurance (at this point) as there are no underlying immunilogical challenges that we can find. And yet are we giving her the best possible chance - always the question. We are frankly very afraid of taking her off antibiotics. We are currently doing daily tracking to see if the mild episode trend is related to the amount of Azith she is taking, as I suspect it is. If so, that would seem to indicate that we are treating her with anti-inflamatories. I hesitate to post about this, as it is completely just a suspicion on my part at this point. We are debating the correct amount for her - if preventative only, then her low dose is right. If treating something, then she needs more - and then I would have a different thought process about IVIG and the investment needed. It's a hard thing to test without taking her off - I am just not willing to do that! So we are probably 3 months out from proving a point... If I understand correctly, he would say that IVIG is still needed, right? Do you understand about his basis for thinking this? Thanks SO much for posting!

Well said...Alex. I think there is still more to learn about IVIG but for the most part, it is heading in the right direction. I can tell you that when we met with Dr. Leckman at Yale, for the first time, last November when we were looking into TS vs. PANDAS, etc..We had a daughter that was sneezing over 16,000 times a day. I remember someting that Dr. Leckman said to me that has stuck in my head to this day. While addressing diagnosis theories he said "well if it turns out to be PANDAS then we no what to do, IVIG". He was so confident in his words that they burned into my brain! I know Dr. Leckman thinks very highly of Dr. K and believes that there is good evidence to the IVIG/cure. That's why Dr. Leckman is doing the IVIG study with Dr. K's help! Hi, You know, I think Dr. K would say, and does say, that PANDAS kids need IVIG. The first time we consulted with him back in June I remember him telling me that in his years of treating PANDAS he has had only one child cured from antibiotics alone and that the child was in a true first onset and was treated very soon after the onset. I think that Dr. K would say that the child is cured when there are no longer any symptoms, and no flares associated with illness. I don't want to put words in the man's mouth, but that is the way I understand it. I think in his opinion, Sammy is not cured because for one, if he gets strep, even to this day, he has a return of symptoms. To Dr. K that means that the underlying autoimmune condtion is still there. Also, in the phone conversation today, he basically said that he thinks Sammy still has symptoms, and just deals with them or hides them. I think Beth Maloney would take exception with that. As for IVIG being a cure, and I see Faith posted that she has some questions, I think this forum is very deceiving in that what we see on here are the people whose children are having problems. So if someone's child has IVIG and still has issues, they keep posting. If they have IVIG and get better, they get on with their lives. Dr. K told me he has treated 500 or so PANDAS kids, and he treats with IVIG, and he says it is a cure. Either the man is crazy, or for the most part that is true. WorriedDad's child is obviously an exception, but from what I understand in speaking with Diana Pohlman of the fabulous PANDASnetwork website, his child's is a true exception that Dr. K says is his toughest case ever. Also, in speaking with Diana, she says that the healing process after IVIG is extended. The kids continue to have occasional flares for a year or two after IVIG, but they get less and less severe and then finally, nothing. For those that think IVIG is invasive, I have to say that it is really no big deal. My son had one infusion through Dr. B and we almost had fun. He felt crummy the next day and then was back up to speed physically. PANDAS wise not so good yet, and Dr. K says it won't get good because we didn't do a high enough dose. At this point I think we are going to choose to believe the man. Going to call Dr. B tomorrow to discuss. As far as IVIG being dangerous, there has never been one blood borne infection passed through IVIG in the U.S. Those are fantastic odds. Certainly the most dangerous part of my son's IVIG was the 600 miles of driving in one day with his sleep deprived dad. I have been one of the ones on here pushing for Augmentin XR becasue of the Sammy story, and I still think there is something to it, especially with WorriedDad's example to add to it. With that said, I can't think of a reason not to go for a full cure. Alex

I think we all qualify as "researchers" by default!!

Would the person who answered "attorney" PM me? I have a PANDAS/legal question to ask you....THANKS!

Hi Vickie, I thought about adding the "auto-immune history" question, but I ran out of questions (only lets you ask up to three). I think that's an important piece to the puzzle. No auto-immune history in our familly but OCD tendencies run in mine, DH has very mild tics (he'a a Nucleur Engineer). I also had many issues with my tonsils as a child (had them removed when I was 15)...hmmm interesting. I also recently read a post form a mom saying she tested positive for ANA titers. i did as well (homogeneous pattern which is suggestive of Lupus). This all fascinates me... Thanks for letting me know your husbands "other" occupation. That's a hard one to cover in a poll question. Did you ever check your family for aso titers? Lynn

Have you considered consulting with an immunologist? Dr. Bouboulis is EXCELLENT. IgG levels are related to the immune system and as others have already explained. Your child might be immune deficient (or may be in the future). Our dd12 dropped from low/normal, to high/abnormal within a month. We just had them rechecked (3rd time) and are awaiting the results. Good luck!

Ok, so we start IVIG next week! I have had conversations with many parents that have recently did or are getting ready to start IVIG with thier children. There seems to be some "difference in opinion" between the docs (Latimer, Bouboulis, Dr. K, and others) as to how much, over how many days (one or two) and especially, how often. This stresses me, immensely! Please let me know what your personal experiences have been with IVIG.

That's great news! We also start IVIG next week! I have had conversations with many parents that have recently or are getting ready to start IVIG and there seems to be some "difference in opinion" between the docs (Latimer, Bouboulis, Dr. K, and others) as to how much, over how many days (one or two) and especially, how often. This stresses me, immensely!

I hope these aren't to personal questions to ask but almost all the doctors/specialists we have been working with have mentioned a pre-disposed/genetic link, possible to PANDAS. i.e.: family history of tics/ocd, etc.. A lot of parents have also told me that there child's sudden onset/manifestation was during or soon following what they thought was a cold/virus/flu, etc.. Finally, what do you do (did) for a living? I can't count how many parents have to me that they have some sort of engineering background. So here it goes, for those willing to participate. 1.) Was your first (known manifestation a sudden onset? 2.) Was the initial onset during or following what you thought was a cold/virus/flu, etc? 3.) Is there family history of tics/ocd, etc? 4.) What is your (and/or your spouses) occupation? 5.) Do you have more than one child that you feel has PANDAS or has been diagnosed wit PANDAS? Is there any other question I didn't ask that you think is common among PANDAS kids/parents/families?

Ok, so I hope these aren't to personal questions to ask but almost all the PANDAS doctors/specialists we have been working with have mentioned a pre-disposed/genetic link, possible to PANDAS. (i.e.: family history of tics/ocd, etc..) A lot of parents have also told me that there child's sudden onset/manifestation was during or soon following what they thought was a cold/virus/flu, etc.. Finally, what do you do (did) for a living? I also can't count how many parents have to me that they have some sort of engineering background. Since you can only ask 3 questions per poll, I will ask the others via a seperate poll. Please, add comments or elaborate in your response if possible.

WorriedDad, First I want to express how happy (for you) and at the results you are seeing with the Augmentin XR. I think it is fair to say that "one size DOES NOT fit all" and that I am so glad you are finding what works for your child. Our children are paving the way to better understanding this crappy disease/syndrome. If only research/science can catch up-quick! For all the newbies out there I want to stress the importance of making sure when you have ASO titers checked that the lab puts a "qunative value" on them. Some do, without requesting, some don't (it's just positive or negative). PLEASE, make sure the doctor writes that on the lab request. Remind the lab, when you are there. These numbers can be very important when it comes to making a convincing case to your doctors. Some of the very best PANDAS doctors sometimes forget the very simple things, like these, as they are so overwhemled with patients. Until science/research and education catches up (ie: diagnostic tests such as Madeline Cunningham test, etc.), and until doctors know how to diagnose and parents don't have to "convince" the doctores your child is suffereing, we as parents have to take the active role, ourselves! Together, with our doctors and through networking with each other, we WILL win the war, not just the battle(s)!!!!!!

Wendy, I'm sorry that you have the "trifecta effect" going on. There's some crazy step strains out where you guys live. We just got the cam scores for our younger dauther (10 yrs.), yesterday. 127! She has moderate seperation anxiety, weather fears, OCD, body imaging. Her number correlates perfectly with her manifustation. We knew it would be low positive. I thought we got hit with a "super" strep strain since our entire family had positive aso/anti results but Dr. Latimer thinks it was a weaker strain that creeps in undetected (non-syptomatic) and brews in the body. Whatever the case Lauren had possible contributing factors (two back-to-back vaccines, lower IgG levels, which more than likely contributed to her BBB breach. I try to not focus so much on the cause (we are to late to get a culture to identify a specific strain), bur focus on treating the current manifestation and to try to limit re-exposure by practicing all the good ideas other parents have contributed here (ie: toothbrush care, probiotics, etc), but it's in my thoughts all the time! I hope you find and keep the strength to conquer this, you have my continued support. Lynn

yes, you are correct P.mom! I was refering to our 2nd daugter (10 years old, not 2). Sorry, for any confusion.. Our older daughter was sick 23 days, last school year with uri, throat issues. It makes since to have her t&a removed to help prevent future infections. Many of the PANDAS doc tell me they believe that's were the strep hides..

When we met with Dr. Latimer, last week, she suggested that we have the tonsils and adnoids removed, asap. She also confirmed that they would be sent to pathology to check for strep. We go back to Georgetown next Tuesday to do the consult with the pediatric ENT. I am now struggling with the idea of having dd2's removed as well. She has also been diagnosed PANDAS by both Dr. Bouboulis and Dr. Tifiletti, (had the aso rise but has presently with only moderate ocd, weather fears, anxiety and body imaging) We are anxiously awaiting her Cam score from Dr. Cunninham's. (due back any day now). BTW, dd2 always gets dark circles...

Hi TMom, I would not call it "to technical" as there is a BIG difference in PEX and plasmapherisis. I will be the one to say, and not the first one, "the NIMH is WRONG calling the two the same thing". When doing PEX youre introducing two variables at the same time. That makes it harder to know which variable is working when you get them done together the "pherisis" or adding "the good antibodies". Not to mention, Dr. Bouboulis just told me on Sunday, that doing PEX vs. Plasmapherisis followed up by IVIG does involve more risk. Just my thoughts... Wasn't there a thread, not to long ago, that was talking about how incredibly inaccurate the NIMH website, regarding PANDAS, was and how it needed updated/changing? Lynn

Oops! Was typing so fast I forgot the "r' in difference. In regards to "PEX". I want to note that as it was explained to me, you are taking out the bad antibodies from your child's blood and adding back in donor "good antibodies" so esentially it is Plasmapherisis WITH IVIG added into it!

Peglam, I hope you don't mind that I use your quote as an example as many apply to my concern..are you talking about "true PEX" plasmapherisis with IVIG (taking out your bad antibodies and putting in good donor antibodies)?? I recently have seen PEX used and referred to as plasmapherisis. It confused the heck out of me so for the newbies out there (which was me not to long ago) and for those that have been incorrectly using the word "PEX" when they are actually describing plasmapherisis. Let's define... This is Buster's "very easy to understand" description... PEX is plasma Exchange -- you put in someone else's for your child's Plasmapherisis -- you take out your plasma and replace it with Albumen IVIG -- no removal of your plasma, you just add a very sterilized version of someone else's in addition Yes, My daughter has low IgG. But, I think the reason for not doing PEX was more because she thought my daughter would pull out the line. I think she's got a point there- when we contemplated PEX, this was one of our concerns-also, getting our daughter to stay on the bed while the procedure is in progress. We'll have the same challenges with IVIG, I suppose, but we'll deal with it. I think to a certain extent, the treatment for PANDAS is a bit experimental and it gets shaped as more is learned and more experience is gained. There isn't a standardized protocol. I actually appreciate the lack of "checklist" here. My daughter is wildly atypical and doc who we have seen that do the whole protocol checklist, cannot place her- so they don't know what to do, and do nothing. One of the things I liked about Dr. L is that she considered what would work for THIS child, not what works for THESE kids. My experience with DAN doctors has been the opposite- more a lets try what works with these kids-it can't hurt to try it scenario. What is known about PANDAS is that there is an immune problem, but I don't think its necessarily a matter of over or under active immune system. First off, Science doesn't have a comprehensive understanding of the immune system, or autoimmunity. I know for us, we cannot wait for the research to be completed. My daughter needs help years ago...So, I want to try what may work, what makes sense to try based on the information we do have. We know she has abnormally high anti-D2 antibodies (it makes sense to me to remove them if we can). We know her antibodies are low. We suspect her immune regulation is poor- its suppose to knock out these rogue antibodies that are interacting w/ self tissue. So, if her own system is not working properly, it makes sense (to me), to give her immune system components from other people. I want science to keep trying to find out why this happened to my daughter and to learn how to prevent this happening to others and more certain treatments for when it does happen-but, my daughter can't wait for that to happen. The ball was dropped on PANDAS research- but the study that was done on PEX/IVIG did show that they were beneficial treatment for PANDAS. But the slice of PANDAS that was looked at was narrow- did not include a wide variety of PANDAS kids, and I know that my daughter certainly would not have qualified for that study. Mostly, I think there needs to be a balance in medicine, between the art and science. I think its skewed right now in the direction of science. Doctors hesitate to try things that they believe may help a patient because it hasn't been proven yet in the laboratory. I think there needs to be more room for physician discretion so that I don't have to run half way around the world to get help for my daughter.

I recently have seen PEX used and referred to as plasmapherisis. It confused the heck out of me so for the newbies out there (which was me not to long ago) and for those that have been incorrectly using the word "PEX" when they are actually describing plasmapherisis. Let's define... This is Buster's "very easy to understand" description... PEX is plasma Exchange -- you put in someone else's for your child's Plasmapherisis -- you take out your plasma and replace it with Albumen IVIG -- no removal of your plasma, you just add a very sterilized version of someone else's in addition

We are a car ride away from her office (4-1/2 hours south of Betesda) but are planning on heading up tomorrow and spend the night somewhere near her office since our appointment is at 9 a.m. on Wednesday morning (can't trust DC traffic)! 30% chance of snow, tomorrow, none on Wednesday..I hate driving in snow! (You can tell I have lived in the south for too long)! Any suggestions as where to stay? Any chance there are some DC parents that want to connect on Tuesday night or Wednesday afternoon? I have met so many already! I love to put faces with names! LMK! I am well armed with approval request forms from our insurance company along with the supporting research and documentation to back it up! Wish us luck! Lynn

Lauren had "low-normal" total IGg when she was tested in late November. When she was retested less than 4 weeks later by Dr. Bouboulis, she had fallen out of normal range and into "high-abnormal" so as of that latter test, she wasn't "crazy low". We also don't also understand why some of these children actually become compromised or worsen with the onset of PANDAS. I agree with the comments from other parents that each child is different and needs to be treated individually. I personal recently began to theorize that different strains tend to react differently within our children. Some are “super-strains” causing RF or worse, causing multiple family member to manifest into PANDAS, some strains more resistant to Augmentin vs. Azith, etc...some causes the immune system to go "wacky"..or compromises it! We will discuss our personal situation with Dr. Latimer this week and along with the recommendation of Dr. Bouboulis and Dr. Trifiletti, we will, as Lauren's parents, have to process the information, weigh the costs vs. benefits and make a decision, and live with that. If that decision work for our child. Yippee! If it doesn’t far so well, try, try, again! Something else to consider...maybe some parents have made choices to do or not do both PEX and IVIG treatments because of financial costs and chose one over the other, and it wasn't the ideal choice but a sacrifice necessary. I really hope someday our children will get the treatment they need because it is need and parents won't be forced into "choosing one or the other" because that's all they can afford. As the medical/insurance community starts to embrace PANDAS and it is more accepted hopefully coverage will be more available, more of our sick children will have it done and we will learn more about how well it works in general. I envision a "PANDAS World" in the future where every pediatrician knows what it is, they quickly, accurately recognize and diagnose. They obtain cultures early on, so we can identify strains. There are diagnosis tools similar to what Madeline Cunningham is already doing in her research so it is no longer a "clinical diagnosis" and most importantly our children and their families will suffer less! We will get there, I am confident. There are too many strong, passionate parents that in the world and on this forum that will settle for nothing less! Lynn

Do you have Tricare insurance?? Just curious as we are active duty Navy and gave TriCare Standard. We are seeing Dr. Latimer on Wednesday to discuss plasmapherisis and plan on doing monthly ivig, also. Our daughter does have low IGg/immune suppresed. I am so excited that this could possible be one obstancle that might be to so difficult to navigate. We could use the break! Good luck with the IVIG. We think Dr. Bouboulis us GREAT! Lynn

we sat in the conference room at NBC studios, the same evening that we appeared on the Today show. Dr. Nancy Snyderman met with us to see what she could do to help. She really felt that this was either tourettes that we we experiencing or "PANDAS". She was the first person to mum the word to us. We them proceeded to phone conference with Dr. Nicolades and Dr. Leckman that evening. It was surreal. We spent hours there discussing/talking to different doctors. We ordered in pizza & salads. If you were standing outside Radio City Music Hall at 8:30 pm that eve looking up at NBC studios you would have seen one little light on, coming from that conference room as mist everyone had left for the day (except Brian Williams)! Nancy, and her staff, went out of her way to help our family that evening and continues to do so... Her staff said she has never done that before for anyone. We cannot thank them all enough. They call or text us everyday to see how we are doing, they continue to help and support us. We are most greatful that we are part of the "today show family". The rest is history in the making...

Some suggestions... Arrange for a phone consult with Dr. Trifiletti. Once complete your child is "officially" a patient. He can guide you through what meds to try/use until you return to the states. Our DD1 (Lauren), also gets bad sinus infections. Dr. Bouboulis would be my reccomendation to see as soon as you get stateside. He told us the reason why my daughter was sick sooo much last year (pre full manifestation) was because the strep was hiding in the inflamation of her sinuses and without heavy, long-term steroids along with heavy, long-term abx, the step was never fully erradicated, hence why she would get sick again a few weeks after finishing the wimpy, normal dose of abx that she was off and on again all year long!!! I am theorizing this might be what you are dealing with....good luck to you. I hope this is useful information. Lynn

I will send you a personal message with his contact info...

I did the "housecleaning" thing weeks ago, including toothpaste/toothbrush as we suspected someone else (DD2) would have it. Guess I was surprised we all were positive, non being symptomatic. Dr.T theory is that there is a particular strain going around. He has seen over a dozen children that have a sneezing tic like our daughter, in the last few months. Some manifested a few months before, some about the same time, others after. From what the top PANDAS doc's have told me (trust me, I have spike to them all), they have never seen the sneezing tic in a PANDAS case until they saw Lauren. Now, because of her media exposure they're "coming out of the woodwork"!! Thanks for your great advice!!