LNN

How about the $10 Million Question - Is IVIG or Pex a cure or just a treatment?

Pre-pex, tics were by far our dominant issue, because they were so severe (motor and vocal). We also had medium OCD but used inositol, which seemed to really dampen it. Hard to say how bad the OCD would've gotten without it. Should've focused more on ERP but at the time, we were so overwhelmed with the tics, rages and cognitive fog that the OCD stuff took a back burner because it wasn't stopping him from doing things. Post-pex, we haven't (yet?) seen any tics. One or two hums or one twitch at the start of swine flu - things that made me paralyzed with "Oh my God it's coming back" but for the past 10 months, never anything more than that (I am choosing my words carefully because if I say they're gone, you know I'll jinx it). Either because pex changed the chemistry or because of maturity or because we worked so hard at CBT, the rages have also been immensely better for the post-pex episodes. We've seen flashes of intense anger, but he's either taken a deep breath, stomped off for a few minutes to recompose, or just used a flood of words to express his frustrations (usually with his sister, who annoys him on healthy days too). Post-pex, our major issues have been OCD and brain fog. These two episodes were never been more than 50% as bad as pre-pex episodes. Maybe because the tics and rages aren't an issue, maybe because we put energy into ERP in the past year. Maybe because pex helped. Maybe because we had a knowledgeable doctor and we used prednisone to stop it early on. Probably all of the above. But we can't be relying on prednisone every few months. So we decided to try IVIG. Why did my son prefer pex? A combination of things. First, he was asleep for the needle insertions for Pex. For IVIG, they had trouble with the first attempt at the needle in his hand and had to do a second one. He cried from the pain and he doesn't normally do this. For pex, Georgetown was well-equipped with entertainment. For IVIG, he was bored, despite my best attempts with dvds, internet games on nick.com, etc. And with IVIG, he had the headaches, nausea and fever. There was no pain with Pex. There was lots of pain with IVIG. With pex, I could watch him get better. With IVIG, I had to watch him hurt. But only time will tell if it was worth it.

I know that as soon as I post this, everything will change. But while my 7 you son was getting IVIG this week, I was reading the posts about the horrible experiences others were having. Not only was my heart breaking for those kids and their parents, but my heart was in my own throat, selfishly worrying about our own situation. So I feel like I should chime in with a not so bad IVIG experience to give a little hope to anyone who has an upcoming treatment or is considering one. Very briefly, my 7 yo son has had Pandas for almost 2 years. First year, we battled with local doctors, on and off abx, same story many parents have. Last May, we did the Cunningham test - CaM K 187. In June, we started long term abx, did prednisone and had the most amazing results. Had a T&A in July, did pex in Aug. Started to breathe again in Sept. But in the fall and winter, he had two episodes due to exposure to others with GABHS (tho nothing compared to what we dealt with pre-pex). Still, it seriously effected him in school and we lost him to the disease for a second year. This past spring, we decided we needed to do IVIG, which we finally did this past week. After making him drink 48 oz for the three days leading up to it, Day one was very uneventful. The treatment was completed in 4 hours (weighs 60 pounds, 1.5 g/kg).We treated throughout with motrin and benadryl. My son was bored, but felt fine. We got ice cream afterward and hung out at the hotel eating more junk food. He felt a little tired at dinner. The second morning, he woke up with a moderate headache so I gave him motrin. We had breakfast and he started the 2nd treatment alert and anxious to get home. About 90 min into it, he started to feel nauseous and get a bad headache. So the nurse stopped the drip for awhile. We gave him some motrin and he rallied a bit. But then he went to sleep. We resumed the drip, but at the slowest rate. Awhile later, he developed a fever of 101. He slept for a long time and wouldn't eat or drink. He just wanted to sleep. After awhile, I realized this was a "Pandas fever". 4-5 times in the past 2 years, my son has developed fevers, sometimes as high as 102-104, that only respond to motrin and not tylenol. Once, it lasted 4 days. Other times, it's lasted as short as an hour, where usually around 5pm, he'd suddenly stop playing and lay down on the couch with a fever. Give him motrin and 20 minutes later he'd be back to normal. No underlying illness, no virus, nothing. I suspect it's got something to do with the body's reaction to inflammation. I know it's not common, but I have seen a few other parents have the same experience. The nurse had held off giving him his afternoon dose of benadryl because she didn't want to make him more lethargic or nauseous. But ironically, at 4 pm when we were (finally) close to the end, she gave it to him and lo and behold, he rallied. The fever dropped to 100 and he sat up and asked for something to eat and drink. She was stunned. Had never seen anything like it. He then proceeded to talk everyone's ear off and tho still tired, he felt ok. Mild headache, no nausea. So day 2 took us 9.5 hrs, not the 4 we'd hoped for. But we finished and were home a few hours later. I woke him up in the middle of the night for both motrin and benadryl and we continued that thru today, every 4-6 hours. Today he was a little subdued, a little emotional. But not bad. No headache. Ate normally. No fever. We still see the same OCD we saw pre-IVIG - he was in a moderate episode for the 2 weeks leading up to IVIG - again due to exposure. But nothing worse. Of course, it's only the first day home and I realize it may all change in a blink. In fact, I'll probably be worried if nothing happens (how perverse is that?). IVIG was not fun. My son said he'd do pex again no problem but does not want to have to go thru IVIG again. But I wanted to be a reminder that every child will probably have a unique experience. You have to do what you feel is best for your child and try not to second guess yourself.

Pex (and we are all talking about plasmapheresis, not plasma exchange, as that is the only thing offered) is considered higher risk than IVIG because 1) there is anesthesia (propofil) used to insert a 10" catheter line into the femoral vein in the groin 2) there is risk of blood clots while you're doing the pheresis and 3) there's risk of infection during the 3 days you're in the ICU for the procedure. The majority of risk with IVIG are considered "self-limiting", in that the nausea, the headaches, will resolve with time and medication. They aren't things that will lead to more serious complications. However, there is a risk, however small, that because IVIG plasma is a human product, it could contain a virus or antigen that isn't currently screened. Because it is so widely used without long term adverse effects, it is considered safer than pex. It isn't that pex isn't prescribed anymore. It is used for the treatment of several diseases - it's a kind of blood dialysis. But only one Pandas doctor and one hospital use it for Pandas and that doctor is out of the office for personal reasons. So TPotter's plans were altered by circumstances, not by a decision that pex wasn't what she wanted for her boys (if I understand her situation correctly). As for how do you decide which to try - pex is considered for extreme cases and for kids who need immediate relief. It anecdotally is more effective for tics. As TPotter said, many of those of us who went that route struggled with the risks inherent with the human blood aspect of IVIG. As intrusive as the procedure is, it's still just your own kid's blood. However, pex is about 2 - 2.5 times more expensive than IVIG. $18K-$23K Pex vs. $8-10K IVIG. So depending on your insurance, that alone can make the decision for you. Pex removes the offending auto-antibodies and Pandas junk. But it doesn't do anything to put good stuff in. IVIG doesn't remove the bad stuff. But it does flood the body with good antibodies and in ways not yet understood, seems to bind to the bad stuff, dilute it, disarm it, and possibly boost and reset the immune system to teach it better behaviors. But it is still a black box as to what exactly happens and why it works in such varying degrees for different kids. There is no easy answer. Dr T suggested that pex would be good for kids with hyperactive immune systems and IVIG would be good for kids with immunodeficient ones. But I don't know that many of us know which we're dealing with. Some of it depends on your feelings about the risks of donor blood product. Some depends on insurance. A lot depends on where you live and what doctor you see. Only one doctor uses pex, so most likely, IVIG is your only option. What I would love to see is true pex - pheresis to take the bad stuff out, and instead of pumping albumin back in to replace the plasma they're throwing out, would love to see them pump in donor immunoglobulin, which is true plasma exchange. But no one does that. I was in the camp that opted for phereis first - partly due to my hyper-cautious aversion to the human blood product issue and partly due to insurance coverage. Pheresis last August did get rid of the tics. And daily antibiotics have kept my son strep-free for a year. But neither kept him from having "canary" episodes where he'd go into a Pandas exacerbation from being exposed to friends or family who had GABHS infections. After 2 significant episodes this past winter and one mild one in the spring, we decided we couldn't ask my 7 yo son to keep riding this roller coaster anymore without trying our other option. We did IVIG this past week (will post on a separate thread). I don't regret pheresis. It helped a lot, and the episodes this past year were, at their worst, only 50% as severe as pre-pex episodes. I don't know how I'll feel about IVIG until many months have passed. I do know that my son thought pex was a breeze (except for the last 30 min when we had to remove adhesive tape stuck to his scrotum - which he recalls vividly). But he hated IVIG and said he hopes he never has to do it again (I'm with him on that one). I don't know if there are any easy answers. You can only trust your gut and make decisions that will leave you with the least regrets.

Hooray for your whole family!!!!!! I hope you are pleasantly shocked as you start to adjust to a new "normal" that's filled with nothing but good health and more happiness than you can stand!

Yes, I will definitely post what I find out from Dr. B. I would also be interested to know if others on this forum are getting high or normal results. My Pandas son had C3D of 51 (non-exacerbation) and CaM K of 187 (exacerbation). My daughter, who is a Pandas question mark, had C3D of 25 (no CaM K done). I didn't follow the Dr B explanation or the googled articles either, other than it's an indicator of autoimmune response. Dr B did say it explained all those complaints of muscle/joint pain I hear every night at bedtime.

I generally do not refer to the NIMH Pandas site, as it is far from complete in it's explanation of things, but here's an excerpt re: titers What exactly is an anti-streptococcal antibody titer? A. The anti-streptococcal antibody titer determines whether there is immunologic evidence of a previous strep. infection. Two different strep. tests are commercially available: the antistrepolysin O (ASO) titer, which rises 3-6 weeks after a strep. infection, and the antistreptococcal DNAase B (AntiDNAse- titer, which rises 6-8 weeks after a strep. infection. Q. What does an elevated anti-streptococcal antibody titer mean? Is this bad for my child? A. An elevated anti-strep. titer (such as ASO or AntiDNAse- means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. The height of the titer elevation doesn’t matter. Further, elevated titers are not a bad thing. They are measuring a normal, healthy response – the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection. Q. When is a strep. titer considered to be abnormal, or "elevated"? A. The lab at NIH considers strep. titers between 0-400 to be normal. Other labs set the upper limit at 150 or 200. Since each lab measures titers in different ways, it is important to know the range used by the laboratory where the test was done – just ask where they draw the line between negative or positive titers. It is important to note that some grade-school aged children have chronically "elevated" titers. These may actually be in the normal range for that child, as there is a lot of individual variability in titer values. Because of this variability, doctors will often draw a titer when the child is sick, or shortly thereafter, and then draw another titer several weeks later to see if the titer is "rising" – if so, this is strong evidence that the illness was due to strep. (Of course, a less expensive way to make this determination is to take a throat culture at the time that the child is ill.) Q. Should an elevated strep. titer be treated with antibiotics? A. No. Elevated titers indicate that a patient has had a past strep. exposure but the titers can not tell you precisely when the strep. infection occurred. Children may have "positive" titers for many months after one infection. Since these elevated titers are merely a marker of a prior infection and not proof of an ongoing infection it is not appropriate to give antibiotics for elevated titers. Antibiotics are recommended only when a child has a positive rapid strep. test or positive strep. throat culture. I would recommend your own google search for more current info.

By no means can I discount the risks of long term abx. It's not something I wanted to do initially. I was much more inclined to just treat as needed. But then my son developed chronic strep in his adenoids. He'd go on 10 days of amoxicillin and get better. Then go off and Pandas symptoms would ramp back up, lymph nodes would swell. Back on 10 days amox...repeated this cycle for 4 months - which was probably far riskier in terms of teaching that bacteria to become resistant to amox than if we'd just stayed on the amox for 4-6 weeks non-stop and eradicated it fully. After seeing my son go up and down for most of 1st grade, we went on long-term zith, then switched to augmentin because amox no longer worked. You live with this stuff long enough, bacterial resistance becomes the least of your worries. It's more the improper use of abx - people stopping them before the infection is fully gone, giving livestock a daily dose with every meal...70% of the antibiotics used in this country are given to livestock. Also, many Pandas kids who do immunology workups find that they have some degree of an immune deficiency. In my son's case, he failed to produce antibodies to 13 out of 14 pneumonia strains that he was vaccinated for. His body does not know how to attack strep with the same ferocity as the normal kid. So antibiotics give him support. His colds no longer automatically deteriorate into something worse. As I said, I'm not trying to minimize the risk. It's just that your perspective changes and when it's time to pick your poison, Pandas symptoms vs. abx risks, the scales usually tip unanimously in favor of abx. As for the 1st grader feeling, please don't ever worry about that. I've been in the battle for 2 years and still have much to learn. And sometimes it isn't until you try to explain something to someone else that something really sinks in. Also, this forum isn't like many other forums where you'll see a lot of hankies and "woe is me". We do support each other - don't get me wrong - but we are a lot of geeks who like to share research papers and arm each other with knowledge. Ask away. Laura

You may not like my response....because although I empathize with him, I still hold him accountable. We have a dog and we crate her when we're gone for the day. When my son rages, he tries to "crate" the angry guy. Mostly it works. Sometimes tho, he'll tell me he can't "help it.' That the Pandas made him act a certain way. I remind him that if our dog bites a neighbor, I'm still responsible, even if I didn't personally do the biting. It's a responsibility I have as the owner of the dog. So if he's trying like crazy to control his temper or use ERP techniques, I try my best to be understanding. But if he's not trying, or if he's letting OCD or rages seriously interfere with his ability to function or interfere with the rest of the family's ability to function, then he's still held responsible, sometimes with a loss of privileges. Yes, it's a disease, but it's not a blank check for uncontrolled behavior. Makes me sound harsh and I'm really not. We try to give a lot of slack. But even tho a mother's love is endless, her patience is not. Laura

My son's adenoids were chronically infected. The T&A did wonders and moved us miles forward on recovery. Immensely happy we did it. it allowed him to heal for the first time in a very very long time. It did not "cure" the Pandas - he still had exacerbations afterward due to "canary" exposures. But it got rid of a major source of our problems.

double post

Has your daughter been using any CBT or ERP? It won't necessarily stop the rages, but it can make them a lot more manageable. Therapy starts with the concept of "naming" the OCD and the anger and helping your daughter realize the disease is something she has, not something she is. Then she has an "external" enemy to fight. If you haven't read it yet, you might find some help in John March's "Talking Back to OCD". Since you are unfortunately weeks away from more aggressive medical treatment, therapy might make it easier to get thru the month. Fighting this disease is a two front battle - medical and therapeutic weapons used together can really help the family get thru the worst of times. It really helped keep my family together on many occasions. I would also make sure Dr K's office has you on a waiting list, just in case something opens up sooner.

Institute of Living - the one in Hartford? That's about 30 min from me. Wonder if the guy would be open to learning about Pandas. Emmalily - any info on the guy?

Have you had the Cunningham test? What antibiotic did you use? I'm sorry - I don't recall your son's story and what has led you to a Pandas dx.

IMO - this would be a very risky treatment for PANDAS. PANDAS kids do not have a normal response to strep. if they did, they wouldn't have PANDAS. To expose a PANDAS kid to strep in any form would be far more dangerous than any concern you may have about antibiotics or traditional medical treatments.

I don't know what UNDAS is, but I would caution against any homeopathic remedy that tries to correct the immune system by exposing the child to strep in any form. PANDAS kids can react from mere exposure to strep (do not even require full blown infection). IMO this would be a very risky thing to do. Perhaps a better approach, if you were against long term antibiotics, would be to look into naturopathic options. But I would first suggest a full immuno workup so you understood what the body was dealing with.

It's so hard to know what to say in a tragedy. What a great idea involving our kids in saying thank you in a way that only kids can!

Thanks Vickie - that was a huge time saver - took all of 10 seconds to cast my votes.

No, neither prognosis nor this study were discussed. Dr Swedo questioned where the 37% of kids not having rising titers came from. So I later emailed her the citation of the Shet article so she could review it. The other thing she emphasized aside from medical treatment is the importance of therapy (CBT/ERP) to help the child cope with a current as well as any subsequent episodes. She felt that was a key component of getting the child back to baseline that was often overlooked. But the subject never turned to the longitudinal study.

I wanted to add my perceptions on the presentation... From what I could gather, Dr Swedo talks about pex and IVIG as a treatment/cure for that particular episode. She acknowledges (I think even in the literature) that with another infection/exposure, it could start all over again. I was left with the impression that her focus has been on ending a particular episode, not on "curing" the susceptibility to getting Pandas again. My understanding is that Dr K feels IVIG is a cure long term. I hope he's right. Re: the canary response - she said it made total sense to her that Pandas kids could have a response to exposure (not necessarily full blown infection) to strep or other infectious agents. My understanding from conversations I've had with various doctors is that the immune response when an antigen is detected is to mobilize the entire army. Initially, the intruder's identity isn't known, so the body mobilizes all of its forces. Once the intruder is identified, only those swat team antibodies that already exist, or the T-Cells needed to fight a new enemy, stay on the battle field. The rest of the troops are called back home. So the body moves from a general vigilant response into a specific, targeted response over the course of a few days. In Pandas kids, the Pandas response can be triggered during this general immune mobilization. For anyone who wants to see presentation with some of the same slides Swedo showed at AO, including the % of comorbid symptoms, here's a link to a DAN conference presentation from a few years ago: (you have to scroll down until you find this particular presentation) Progress and Pitfalls & Notes on PANDAS http://www.autism.com/danwebcast/video-lis...erence=SanDiego She and Dr Cunningham in their presentation said there do seem to be clusters of outbreaks of Pandas, caused by only a handful of strep strains, and that there's a strong "predisposition" factor - Pandas kids often have relatives with RF and OCD. So she was aware of "clusters" of outbreaks where both the strain and vulnerable families collided. (I thought of SF mom) Re: the study on penicillin and azith - I believe those slides were referencing an old study that she did to show the efficacy of prophylactic abx. I don't think it's a current study. You can see the slides if you go to the DAN presentation listed above. Ok, two final points if you've stuck with me this long... 1. I asked what things we as a grass roots community could do to help move things forward. Dr Swedo felt that we should make sure that kids with other illnesses don't get caught in the Pandas net - that kids mis-diagnosed as Pandas would make the Pandas conversation murky and would obviously do an injustice to the kids. 2. Someone brought up the subject of the outdated NIMH web page. She nodded in agreement and said her department was responsible for the content of the page but had no authority to make updates. That belonged with a public communications department. But she said we could send emails and she'd use that them to support her case to make changes. The email she'd like us to use is: OCDNIMH@intra.nimh.nih.gov Put "Pandas Webpage Update" or something similar in the message header, as this is also the email address being used to recruit study participants in an autism/ocd study. Initially, she was going to have us email her directly, but when I said I hoped she'd get hundreds of emails, she changed her mind and said to use this one. So just be sure to put something in the header that separates your email and ask that it be forwarded to Dr Swedo's attention.

Stumbled on this and thought it did a good job of simplifying what is, for me, a very hard thing to get my arms around... http://www.howstuffworks.com/immune-system.htm/printable

Like others, I am going to try to boost my proxies (but won't be able to touch pelem - you go girl!). I've been voting directly from the www.refresheverything.com site and it's always been really fast. But you can't post a comment with it. How necessary is the comment - I know other groups rely on it as a sign of support, but if I do manage to get a voting block together, I'll have to be able to get it all done quickly. Suggestions (remember, Vickie, I'm a FB illiterate) Laura

Then back to the original question - why does prednisone (and ibuprofen) help? Is it simply closing the BBB and thereby stopping additional auto-antibodies from binding to the Dopamine receptors?

I think if you could ensure you're cleared the infection, many of us wouldn't be on this board. Most of the time, doctors aren't even sure they've picked the right antibiotic for any given infection (since no one's typing the strain - they're just using a shot gun approach). I guess you can only go on symptoms, if there are any. I know that both of my kids are specific antibody deficient - DS Pandas failed 13 of 14 pneummo titers, DD (Pandas?) failed 8 of 14. So I will now advocate for more than the standard 10 day script. But I don't know if there's a fool-proof way to tell. But the point I wanted to make is that doing prednisone while the infection is still active will only help the infection continue and any anti-inflammatory benefit will be short lived. So you don't want to do it until you feel the infection is gone (tho the Pandas episode may still be going on). I think you and your doctor have to be aggressive with abx and trust your gut. I thought it was pretty certain that there's inflammation of the BG going on. Buster can correct me on the specifics, but I thought that the body's autoimmune attack on the BG created inflammation, which then calls in cytokines, which then results in an increase in Cam Kinase, which in turn causes dysregulation of dopamine (and seratonin?). I'm rusty on the specifics, but I've always had the impression it was like a nuclear reaction or domino effect. Inflammation and Cam Kinase aren't mutually exclusive. They're part of the same explosion. But I'll wait until the west coast wakes up and maybe EA Mom or Buster will see the post and chime in.