Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

  • Days Won


Posts posted by LNN

  1. By coincidence, I heard a segment on NPR this morning about a new book ("Asleep") that describes the mysterious epidemic of "encephalitis lethargica" that struck worldwide in the 1920's. The author mentioned that this illness - believed to be triggered by a viral infection - caused inflammation in the basal ganglia that resulted in extreme, rapid-onset psychiatric symptoms in afflicted children. Millions were institutionalized as a result.


    I tried to look for this on NPR but couldn't find it - do you recall the author? This is a "favorite" topic of mine, since at his worst, my son would "freeze" and remind me of the movie "Awakenings" with Robin Williams and Robert deNiro - based on the same epidemic of lethargica. I literally woke my husband at 2am in the beginning of our nightmare in a complete panic. Didn't matter that lethargica has rarely been seen since. I was convinced my son had it. Would love to read the book if you can recall the author.


    As for the rest of this thread, while I whole-heartedly agree with all the sentiments, I've had this "essay" running in my mind for the past week, after listening to Kurlan's webinar. I'm left with the horrible feeling that the past 10 years have been about a handful of doctors poking at each other's work and accusing each other of "bad science" in an academic way and that both sides - Kurlan and Swedo - may both have become "married" to their ideas and have become blind to any truth in what the other is saying. If we're going to move this forward, we all have to be willing to "date" our ideas and theories and be willing to break up with them and date other ideas. Goes for the doctors and the parents. I think it's our job to ask questions - lots of them. But I know I personally am just as guilty of only wanting to listen to "convenient" truths that fit into my world. We need to reframe this as a big puzzle to be put together rather than a battle between sides.



  2. I do find it hard to believe that he can say the mouse model is not validated. He was one of the original docs stating that if this is autoimmune it would be reproduced in an animal. Basically, its just public policy.


    I think we need to push for good double blind studies, its the only solution.

    His blast against the Columbia study was that it wasn't double blind and supposedly when researchers didn't know which mice had been "given PANDAS" they couldn't detect the behavioral changes the Columbia researchers saw. But I'm not aware of any published research that has "failed to validate" the Columbia study - are you? He spoke as if this was a published finding, but it's only been 6 months since the original study was published - seems early to have it "disproved"


    As for double blinds - I really struggle with the ethics of this. I don't think anyone would suggest doing a double blind on kids with RF. Just because you can't see inside the brain the way you can inside the heart, how does a double-blind become "safer" for PANDAS kids? It flies against the "do no harm" rule in my book.


    I'd rather try to push for research that used neuro-imaging - maybe they should be dissecting the mice brains instead of observing/interpretting their behaviors

  3. As I listened to the webinar, I tried to take some notes. If his objections can be overcome, then we will have moved a mountain.

    So here are some of the things I heard him say:


    1. Criteria: His major issue, to me, was he hates the Swedo criteria, especially the main 5.

    2. Criteria: Secondary symptoms are too common in the pediatric community and could make anyone "eligible" for a PANDAS diagnosis

    3. Sawtooth vs. Waxing and waning

    4. 1 Strep titer test cannot be used as clinical evidence

    5. Columbia study not replicated/validated


    My editorial comments:

    On Point 1 - he spent a lot of time proving "PANDAS kids" (doubt he would know one if he tripped over one) don't get strep at the start of an exacerbation any more than TS kids. I would first argue that you have to look for strep in more than just the tonsils. But I could agree that after the initial episode, he might be right. My son is a "canary" Since he's been on prophylactic antibiotics, he hasn't gotten a strep infection. But he had one mild and one major exacerbation when he was exposed to someone with an infection. So maybe the Swedo criteria needs to be clarified- suggestions?


    Point 2 - My personal experience is that it's the overwhelming combination of both the primary and secondary symptoms that make PANDAS so different than TS, traditional OCD or ADHD. Maybe you need to have 5 out of 12 co-morbid symptoms, or a YBOCS type of rating system where traditional TS or OCD kids might score high in 2-3 sections of the scale, ADHD kids might score in 1-2 sections, but a PANDAS kid would likely score high in 7 sections of the scale.. I know plenty of parents who thought "oh it's traditional OCD" until they suddenly read about urinary urges or piano playing fingers. Dr L has said "OCD kids don't usually get urinary urges". It's the fact that you often get many if not all of these symptoms, overnight, that make this disease different.


    Point 3 - someone just needs to get a (sightly padded) baseball bat and knock sense into him. Intelligent people should be able to understand the difference between going 0 to 60 back to 0 in PANDAS versus 10 to 30 to 20 in TS. Or maybe I don't understand waning. But I think a definition or quantification of each phrase is needed.

    He also feels (I think wrongly) that a carrier state is not dangerous or qualify as an infection that should be treated. Maybe in the general population. But there must be something autoimmune that is different in PANDAS kids


    Point 4 - I actually agree with him. I think diagnosing PANDAS on one titer result is bad - bad if a doc uses just one test to dismiss PANDAS, bad if a doc uses one result to diagnose it. I think titers - a series of them - should be considered as "substantiating" evidence, but not a big piece of the puzzle.


    Point 5 - anyone know of any study disproving the Columbia study?


    Other things

    Kurlan, along with many many docs, thinks a carrier state is harmless and doesn't need to be treated with antibiotics. It became clear to me at this point in the webinar that he is using "normal" people as his guide for all of this. Our kids aren't "normal" If they were, they'd get strep like everyone else and move on, with or without antibiotics to shorten their misery. So somehow, really smart immunologists have to figure out why being a carrier or being near a carrier sets our kids off. (Yes, I know CaM Kinase but we need a way to shift the mentality of the general pediatrician - they too keep expecting our kids to react "normally" to a 10 day script. CaM Kinase needs to be explained in "Doctors for Dummies" and taught in med school so they stop dismissing us when we say our kids aren't "normal". No one expected a girl to die from kissing a boyfriend who ate peanuts. Somehow, docs need to understand that simple "exposure" to strep or other bacteria is our "peanut". What makes our kids become canaries?


    I objected to a lot of things in his presentation - not wanting to test a TS kid for strep, not treating for anything but active, confirmed strep throat, the fact that his "Pandas" kids weren't given antibiotics, so maybe they never had the chance to remit, on and on. But I heard two things I didn't expect to hear - I heard "IF Pandas exists" which I think is a new word in his vocabulary and maybe he's starting to hedge a little in case he's on the wrong side of history...and I heard him open to being able to "see" PANDAS - that if an MRI or some other imaging device could "show him" how a PANDAS basal ganglia was different from a TS kid, then he might be more open to it. I read a few months ago about a new imaging technology that was letting docs see nerve inflammation that doesn't show on an MRI - anyone know what I'm talking about?


    So if we were to collectively write a retort to his presentation, using science and suggesting things we'd like to see explored, what would you say? (obviously my bat comment wouldn't make the final cut).

  4. Dr. Stewart is on the science advisory board of the OC Foundation. She is not associated with PANDAS Foundation nor did PF have anything to do with the OC Foundation PANDAS fact sheet.


    Dr Stewart consulted with some parents of PANDAS kids (including some who are latitudes members), who provided her with research studies and information. It went thru 8-9 editing versions. The parents who worked with Dr Stewart were disappointed some things didn't make it into the final version, but they fought hard to make it better than the NIMH page and at least got antibiotics and a discussion of titers on there. Anyone who's ever written a "group" paper knows how hard it can be to get everyone to agree on what goes in and what doesn't, especially on something "controversial". I'm happy about what did get in - it says after the initial episode, other non-strep infections can be a trigger and that in some cases prophylactic antibiotics may be needed - something NIMH won't say even with Swedo as a director. Plus it says be careful about SSRIs. For a psychiatrist using OCF as an "authority" - this is a good thing. Most probably have no clue that PANDAS kids can react differently on SSRIs.


    Do I wish it said more - absolutely. But I don't think OCF is looking to be the authority on PANDAS. They're trying to educate parents who've gone to their site thinking their kid suddenly has OCD so that the parents at least hear the word PANDAS and get some idea of what to research. In their defense, for all it doesn't say about PANDAS, it says a whole lot more than the PANDAS Foundation site does.

  5. iii. Dr. Swedo webcast Fall 2008 autism conference

    Progress and Pitfalls & Notes on PANDAS



    Here's a link to a presentation Swedo gave at a DAN conference. The link takes you to a list of presentations, so you have to scroll down about 8-10 down on the list to get to this particular presentation. The first 30 minutes is about her PANDAS research and what specifically is happening to cause the urination urges. It's a fascinating presentation.


    Now for the practical issues - when my son had this problem, we resorted to pull-ups for a day or two. They make them for kids up to 100 pounds. It at least takes care of the mess issue and keeps you from having to stop life every 2 minutes to find a bathroom.


    In school, the teacher gave him popsicle sticks. Every time he had to go, he gave her a popsicle stick. When he was out of sticks, he had to wait for a certain period of time before he could go again. The teacher was sensitive to the risk of an accident, but we used this as things got a little better and there was more of an OCD component rather than a physical need (i.e. he only had a few drops inside, so an embarrassing situation wasn't a big threat). The sticks introduced a "delay" tactic used in ERP and helped him feel a little in control of choosing when to go but also limited the interruptions in class. When he was really sick, he might get 15 sticks. As he got better, he only got 5 etc...

  6. When this happens at our house, it's "perfection" OCD - my son will insist that he get something perfect, usually his handwriting, but also other things, before he can move on. He'll also get very critical of himself and say things that make me really worry about his self-esteem.


    DJ has named his OCD "Stupid Guy". So if this sort of thing happened at our house, and my son were at the top of the stairs having a meltdown, I would have given him my full attention and said "I know Stupid Guy is behind this. He is ruining your morning and making you get stuck on this thing so that you have to pay attention to him instead of having fun without him. You know that you are the boss, and that if you make him, he has to listen to you. So tell him that you are going to ignore him and not do this math problem about how many hours you slept until after you've eaten breakfast (this is a delay tactic he and I have worked on in "What to do when your Brain gets stuck").


    If DJ continued to be stuck, I'd tell him, with as much empathy as I could muster, that I understood how hard this was, but that I wasn't going to help Stupid Guy. That if I stayed on the stairs, we'd both be giving Stupid Guy our attention and that only makes him bigger and stronger. So because I love DJ, I was going to take my energy away from Stupid Guy and go to the kitchen to get breakfast. And then I'd do just that. DJ now understands that I'm not being mean and that he is the only boss. He hates that he has to do the hard work, but he knows that if I try to do the work for him 1) it doesn't work and 2) it only makes Stupid Guy think he has to listen to me and not DJ, which is very bad because I'm not with DJ a lot of times.


    When we first started this, I'd get lots of whines about how hard it was, how he couldn't help it...After a few weeks of practicing in small ways and making huge celebrations out of minor successes, it did start to get easier. Stupid Guy still loves to push the "perfection" button when DJ is struggling with PANDAS symptoms, but the meltdowns have turned into minor, short stomps and grunts of frustration, sometimes an occasional eraser gets thrown across the room. But by thinking of Stupid Guy, I can distance myself without feeling like I'm abandoning my son and he understands that it's not him I'm frustrated with, but the OCD. It depersonalizes things and lets us both focus on the real problem, which is the OCD.

  7. BTW I just saw an article in an Autism magazine with a similar story. By chance, is that you? What a moving story.. I pray for your child, and help, help, help, for all the children and families going through this.


    Yes, it's my story. Unfortunately, I jinxed myself by having a happy ending to the article. We had a setback in Dec/Jan but prednisone brought him back. So far, things have been way way better than last year, and I'm very glad we did the pex. IVIG will be a possibility if we ever reach a point that PANDAS keeps taking him away. We are a work in progress. Now that they're done selling the Jan issue of the magazine, I've been given a pdf file of the article if you want it. Just PM me.


    Also, Tamar Chamsky's book "freeing your child from anxiety" really helped us. It's written for an adult, but then you can use characters to illustrate the concepts to your child. If you're the book reading type, I highly recommend it. It's a quick read and has some good strategies.



  8. We too have experienced the psychosis. Before we were sure it was PANDAS, we called it Linda Blair Syndrome, because it felt to much like my son was possessed. I always recall the scene in the movie where the bedroom is ice cold and the devil is sleeping and on the girl's stomach, you see the words "help me" written from the inside. This feeling of knowing my child was trapped inside has always haunted me and driven me to find treatments.


    I can't begin to guess on the medical changes that might be going on. I can only offer you a cognitive behavior tip - when my son was at his worst and would rage and run away from us in fear and be totally out of control, we would talk to the "demons" instead of my son. You've heard of "talking back to OCD" and naming the OCD so that your child understands that the OCD is not "her" but a separate disease? We took the same approach to all of the emotional manifestations. We named each emotion - Warren the Worrier, Bossy the Bosser, Edgar the Angry, Calvin the Calm...


    When my son raged in a psychotic way, I'd firmly address "Edgar the Angry" and tell him to let DJ go. I'd say "Edgar, let him go! DJ does NOT want to feel this way and you are not welcome in our house. You are NOT the boss of him and I am here to keep him safe. Now let go this instant!" My son would stop in his tracks. Then he would inch toward me. I would lower my voice and calmly talk to him in a reassuring voice, telling him it was ok, that he was safe and I was here to help him. i would tell him that he was in charge, not Edgar, and together we would make everything better.


    It felt very strange doing it, but the change was dramatic. It helped my son feel less out of control, less terrified of what was happening inside. He couldn't articulate what he was feeling. So by my jumping in firmly and letting him know I wasn't mad at HIM, just at Edgar, a wave of relief would come over him and he'd often start to cry and crumble into my arms. It was like someone finally understood - the same feeling we get when we finally find a doctor who "gets it". Maybe the problem doesn't go away immediately, but you cry in the drive home because you have hope again. You're not alone.


    Sounds crazy, but it worked for us. My son got to the point where he could do this on his own and he started to feel in control. When we started ERP, it was much easier for him to understand that OCD was just another unwelcomed guest and that DJ was the only one who could kick him out, but that I'd be there to help and coach and he wasn't alone.

  9. Yes, and some viruses are bigger triggers than others. I'm curious...is there anyone who's PANDAS kid has had H1N1 and NOT reacted?

    Ok, it's bad enough to not be a "typical" family in our own neighborhood, but now we're not even typical in this thread either.

    My PANDAS son did not react to H1N1. He did react adversely to Tamiflu.

    My younger daughter's physical symptoms were milder, but she's the one who ended up in the ER with a febrile seizure that week (she was almost 5 and had never had any seizure issues previously or since).

    Guess our family just marches to a different drummer no matter what parade we're in.

  10. I have to thank you for this post. Last week, my son came down with a head cold. He has never had PANDAS symptoms from colds, only strep. But over the weekend, I saw subtle things that made my antenna go up. Then on Sun & Mon I heard two small vocal tics - we've been tic free for 5 months post-pex. We've had two manageable PANDAS flairs post-pex, but no tics. So now my heart is in my stomach. Then on Tuesday, he says he feels shaky and his fingers are playing the piano. I am officially freaked. Even at his worst last year, I never saw piano-playing and on Tuesday he's playing Beethoven's 9th. Yesterday, I heard one hum, but the piano chorea was significantly subsiding.


    On the way to work today, it struck me that the only thing that was different for this cold was that I started giving him Zicam for the cold last Friday. Had him sucking the lozenges every 4 hours for 2 days. Then the cold went away. I took the Zicam too and the cold I felt coming on never amounted to much. So here I am thinking how good the stuff is. Maybe for me. But maybe not for my son?


    So maybe it's the Zicam and not a true PANDAS flair. Like I said, colds have never given him a problem. So thank you for this post. I know I can't know for sure. But you helped my off the panic ledge.

  11. One of the really annoying things about humans is we have to want to do something before we'll do it. Add to that that your son has a disease, has been carted off to doctors, been subjected to throat swabs, blood tests, disgusting meds...Add to that the fact that even healthy kids have little control over their daily lives...it sets up quite a power struggle to get pills into a kid who hasn't learned how to overcome the gag reflex.


    We had the same problem. My son (also 7) is on liquid augmentin and no matter what flavor we add, it's still disgusting. So I made a deal with him. I laid out his options. He had to get antibiotics into his body. He had to get probiotics into his body. When needed, he had to get prednisone into his body (the liquid is the nastiest taste known to kids). These all had to be liquid until he figured out how to swallow pills.


    So he didn't have a choice about the meds. They had to get inside - not just for his own health, but for the benefit of the whole family. He couldn't use the argument "well, it's my body, I get to chose." Because this disease effects everyone. So he doesn't get to make a choice that effects everyone. But he did get a choice about what form the meds were in. For a few weeks, he struggled and couldn't bring himself to try. Then he made up his mind and we practiced by using easy pills that were "disposable" (if they got spit out, no big deal). We practiced by using probiotic capsules that were coated (Culturelle) and Motrin caplets (the adult Motrin is 100mg/pill and the children's dose for his age/weight is 2 tsp or 100mg - so same dose). The first time, the pills ended up in the sink. The next time, he practiced putting the pill on the back of his tongue where he couldn't feel it as much and taking a large drink of water. That ended up in the sink too. We said "ok, no big deal. You're not ready. We'll stick with the liquid and try again in 6 months." But by now, his stubborn streak kicked in and he became determined to "prove us wrong" and become master of his own destiny. The next time he tried, down it went. We've been practicing for 2 weeks and he's now able to swallow 2 pills at a time. I'll be calling to ask for augmentin in pill form when this script ends.


    So I don't have any secret ways to sneak in a pill. For us, it was a matter of helping my son make up his own mind and then helping him find ways to practice without the stakes being high (no way could we practice on something as important as the actual antibiotic).


    Good luck!

  12. Doug,

    I am so sorry about all this. I'm not sure even heavy drinking would help, so I guess it's good you won't even try. I really hope the tamiflu helps shorten things.


    Just one thing to keep an eye on - when swine flu went thru in the fall, some kids on the forum did really well on tamiflu. My son took one dose and had vertigo and mild "hallucinations" - nothing crazy, just weird feelings. He also showed signs of tardive dyskinesia after 12 hours. Since tics were a big part of our PANDAS problem, we stopped after one dose. Our pharmacist reported the tardive dyskinesia to the CDC. Hopefully, you'll only have a positive result with the Tamiflu. I just wanted to let you know to keep a watchful eye - as if you weren't already!


    You'll be in my thoughts.


  13. Hold on folks! Look - the current definition is ABSOLUTELY sudden onset of ocd, sensory issues. It is a horrible catastrophic onset. THIS IS THE CURRENT DEFINITION OF PANDAS! PERIOD. It is true that some kids could have been struggling for quite some time. Then - these kids should get their titers checked. Often they will be elevated sometimes not. So then what is next to do?


    If a child has PANDAS - truly has this - they should see some level of improvement in approx. 2 to 5 days on antibiotics. This indicates a bacterially induced infection --- which is the DEFINITION OF PANDAS.


    A lot of problems: autism, tourettes - they can have autoimmune links, of course. I created the pandasnetwork.org website only with the sudden onset cases in mind. EAMom's observations about her daughter definitely show it can be a longtime in coming - the catastrophic onset. But make no mistake about it --- EAMom's daughter did have a sudden, debilitating onset. THIS IS THE PANDAS SYNDROME.


    Any other definitition - is just not there yet. You can consult with the few specialists there are but folks --- this is beyond the capacity of parents you are discussing this with. It is conjecture and it is unfair.


    In her radio interview last week on voiceamerica, Dr Latimer addresses the fact the the definition of PANDAS is changing as more clinical cases are evaluated. For instance, she says that 2 strep infections are not considered necessary anymore because doctors are realizing it's dangerous to wait for a second episode just to have a clear diagnosis. She also said that though most cases are sudden-onset, it's not an absolute criteria. Other factors such as choreiform movements, urinary changes, behavioral changes...need to be considered as part of the whole picture. She didn't make "sudden-onset" a black and white criteria, just that it's a "classic" symptom.


    I also can't say my son improved on 2-5 days of abx. Sometimes we saw improvement this quickly, but after he'd been sick a long time, this wasn't the case. PANDAS episodes frequently take 6 weeks to resolve once the strep is cleared. Lots of us will attest to how 10 days of abx isn't enough to do this.


    I get that you're trying to limit the definition of PANDAS and that not every kid with similar symptoms has PANDAS. I agree with you. The focus needs to be on getting the right diagnosis, not simply the diagnosis that you "want". Yes, it's the "overnight" bump up in changes that sets off the alarms as opposed to a gradual rise. An 18+ point rise in OCD symptoms on the YBOCS is a good benchmark for those with OCD as a big component. But I also don't want a newcomer to think that low level symptoms that existed previously make it impossible to have PANDAS. It should be explored with the same thoroughness as any other diagnosis - and by a knowledgeable doctor who can do a neurological exam. Parents on a forum can only be a sounding board. But I think that's what this thread is doing - helping a parent sort things out, giving food for thought.


    Dr Triffiletti will be on voiceamerica today at noon EST to talk about the less "black and white" ways PANDAS can present.




    The shows are archived, so you can go to this link any time from noon today until probably two years from now to listen. Dr Latimer's and Dr Kovacevic's interviews are also here. Dr K is also exploring the "pediatric" piece, as he's seeing a teenage variation and possibly an adult variation. So I think Swedo's definition was narrow by necessity, but it's evolving as more of us add pieces to the puzzle.


    I hope this post doesn't irk you - I seem to be prone to that this week.



  14. What fascinated me about this article was how similar it was to our stories - the joint/muscle pain, the trouble walking, the effectiveness of NSAIDS, the racing heart.

    My son too complained of chest pain, racing heart. But of course by the time you get to the doctor's office, it's gone and you get "that look" like you're neurotic. We too had the heart checked out with echocardiogram and there was no damage. But you read this article and you know it was covered in med school and the symptoms can be so similar, and yet you get sent away with a shrug because they're looking at the wrong organ.


    What I loved about this article was how matter of fact it was about the very things that supposedly make PANDAS controversial. How it would be absurd to do anything but prophylactic abx, how essential it is to be aggressive to prevent long term damage. And all I could think was - is it because they can look inside the heart with an echocardiogram and see the damage, but they can't see inside the brain to look for inflammation? Would all this controversy go away if doctors could "see" it for themselves? Does our fund raising need to go toward brain imaging technology? Would they believe us then?

  15. Shelia,

    Thank you for your explanation. My reference to 1984 was in response to one post I don't see mentioned. Someone posted the topic asking what had happened to some posts. Then Chemar responded by inviting that person to PM her to discuss any specific questions. Five minutes later, that post was gone. So that, in conjunction with the topics you cite, all happened in a very short span of time and created a very strange series of events.


    I am not a frequent poster and generally do not post about controversial topics. I can certainly understand ACN removing solicitations or being sensitive to posts that suggest a conflict of interest. However, I can also see how someone was trying to be supportive to a community that often has little support outside this forum.


    I am in no way suggesting that you and the group who make this forum possible are not being fully supportive. In the end, this thread will likely be re-read in a week as much ado about nothing - a misunderstanding. I think this stems exactly from your question "How can some of you be so adamant about posts being removed when you don't know why they were removed?"


    It was the lack of explanation and the rapid series of deletions of multiple topics and posts that was bothersome.


    If my words were poorly chosen or caused harm, I sincerely apologize.



  16. I think maybe the moderator removed some topics, unfortunately.


    I can understand that any forum needs to moderate and remove inappropriate posts. However, there is a "1984" feeling to this morning's activity. If you hadn't logged on this morning, there are several topics that now "never existed". It is one thing to protect a site's rules. It's another thing entirely to remove topics that simply show disagreement with a position. I am at a loss to understand this morning's deletions.


    Chemar, could you please post the "rules" of the forum to help us understand why some of this morning's posts have been removed by someone other than the author?


    Thank you,


  17. A friend sent this link to me while she was researching reactive arthritis



    It is factual, based on research and clinical evidence. There are phrases like "mandatory prophylaxis" and there's no hint of controversy. It's something every 1st year med student should know. Mentally replace RF with PANDAS and when this is published, I'll know we've succeeded.

  18. Can anyone out there point to studies that site IVIg as "Standard of Care?"




    I only know of this thread from Canada which specifically approves IVIG for PANDAS





    My own insurance - Cigna - specifically approves PEX for PANDAS but not IVIG. You can try going to various insurance web sites and searching "IVIG" or "PANDAS" - I think some of the BCBS co's may cover it.


    I have Cigna too and it looks like we are heading for IVIG... Would you mind sharing if you've already done it and if and how you managed to get it covered? I have to say so far I am very please with the coverage as far as meds and out-of-network doctors go.


    You can PM me if you prefer.






    Cigna covered our Pex.


    CIGNA covers plasmapheresis as medically necessary for ANY of the following conditions:


    • pediatric postinfectious autoimmune neuropsychiatric disorders (PANDAS) associated with streptococcal infections and Syndenham’s chorea (severe exacerbation)


    It's coverage of IVIG isn't as specific:


    It seemed like it would require more hoop jumping and since we were battling serious tic issues, we were leaning toward pex anyway. So we opted to not fight the IVIG hurdles. But if you print this out, it may help your doctor in making the argument for coverage.


    If you're successful, please let me know. We have seen good results with pex overall, but my son remains sensitive to strep exposure. He's not "cured". So if he were to tank again, IVIG would be a consideration.

  19. Can anyone out there point to studies that site IVIg as "Standard of Care?"




    I only know of this thread from Canada which specifically approves IVIG for PANDAS





    My own insurance - Cigna - specifically approves PEX for PANDAS but not IVIG. You can try going to various insurance web sites and searching "IVIG" or "PANDAS" - I think some of the BCBS co's may cover it.

  20. We asked our pediatrician to fax over a general requisition for a blood draw to our local blood lab. There was no diagnostic code for billing, just a request for blood draw to be provided to patient using patient provided vials. That's all the lab needed - a doctor's request.


    We didn't run it through insurance. We told the lab technician we'd pay it out of pocket. She thought it would be about $15 for just a draw. But we never got a bill. I suspect since there was no code for just drawing blood, she had no way to run it through the system. By the time we finished telling our story and why we where there, I think she felt bad for us and may not have even tried to bill it. She spun it for us as well.

  21. Are there any good books on PANDAS? I read "Saving Sammy" but I'm wondering if there is more of a medical book explaining PANDAS in more detail.




    Here's something that I found helpful in understanding one piece of the puzzle. It's not specific to Pandas, but it explains the cytokine storm, the over-reaction of an immune system that's watched too many Rambo and Terminator movies...




    You can then piece together what happens when strep and molecular mimicry come into play, read a little on what the basal ganglia does (think of a pool filter that sorts the dirt from the important data coming into the brain) and you get a very layman's understanding.

  22. I cannot tell you how many times I thought he had Asperger's. At the most recent appointment with our developmental pediatrician, he told me he just doesn't see it. He is too social. But I'm telling you he has a lot if overlap here. We kept taking him to this developmental guy, we actually had him tested for autism before the BIG PANDAS flare. After the big flare this doctor says to me "Autism does not appear overnight". I have kept that comment with me ever since. But as we all know, PANDAS does happen overnight.


    Before I learned about PANDAS, I too googled Asperger's more than once, but it never fit. Eye contact, close relationships, snuggling, sarcasm - my son could do these things. But there was "something" about his social skills. When I read the mouse study, it was an AHA moment. Now my son's teacher complains that he's TOO social. He's making up for so much time and enjoying friendships like never before. Being able to get him prompt and correct medical treatment has made a world of difference, even if he remains "allergic" to strep.


    You raise a good point. I'm sure AO would happily accept any donation, large or small.

  23. This is from Autism One:


    "Autism One is a 501©3 charity, so donations would be tax deductible. Yes, we can provide a receipt. Yes, some employers match it. We can provide an EIN.


    This is for expenses related to PANDAS coverage such as participants' travel expenses and facility or other expenses incurred directly related to PANDAS coverage.


    The check is written to Autism One, but please designate PANDAS in the memo line.


    I am very excited about this think tank and impressed by the parental involvement in your community driving progress. Any help bringing accurate information to light is much appreciated as we move forward together to heal kids and help families."



    I realize many families aren't in a position to contribute financially, including my own (unless we pick the same lotto numbers as peglem). But if you can spread the word, maybe we can make a greater impact than we think. I believe the only "restriction" that AO has is that it does not want to accept donations from companies that may have a perceived conflict of interest with the AO mission, such as a vaccine maker. If you can help in any way, please PM me and I'll put you in touch with the person coordinating at AO. I do not need to know the identity of any donor. Thanks for any help you can give!

  • Create New...