TexasDad

Yeah, that was pretty interesting. Looks like the distinctions among the subgroups aren't exactly clear cut. Thanks for that. : )

This brings up a question. Are all tics the same? Are OCD-related tics any different than non-OCD tics or classic Tourettes?

DS15 has "compulsive tics" and by talking with him it is very evident they are a compulsive response to thoughts in his head. He can stifle them for a time, but like other compulsions they have to come out at some point. They are definitely the first to show up and the last to go away, but they do go away. Again, early IVIg is the key IMO as long as the active infection is also aggressively treated. In our case, that was only 13 days of Pen VK, but it did the trick.

Everyone that knows me knows I am a HUGE proponent of IVIG, although I do recognize the risks and don't fault anyone for being cautious. I think most of the risks stem from the potential for a bad reaction or blood-borne infection and I'm not aware of any cases personally where IVIG made PANDAS permanently worse. I'm sure they're out there (as it seems just about anything is possible with this disease), but I have to think it would be very rare. There is a test that can be done before to rule out allergic reactions. I do believe that the longer those PANDAS pathways and channels are left open, the harder they are to close and there are plenty on here who have multiple IVIG's with slow progress. The sooner, the better with IVIG, if you ask me. If one of my other children were to be diagnosed, I would push for HD abx and oral steroids first, but if they weren't back to 80% of their baseline within a month, I wouldn't hesitate to go to IVIG. I think the benefits of IVIG are clearly stronger, longer-lasting, and more immuno-modulating (corrective). Many even question if abx have immuno-modulating effects, although I personally believe they do at high-enough doses.

Okay, pretty lame for me to be finally responding to all the posts after three weeks, but we've been in wait-and-see mode. Thanks to all for your feedback and insights. My original post stated that our son had been experiencing exacerbations of symptoms (compulsive thoughts, tics) after a few of us came down with viral URI's although he hadn't contracted anything. Wasn't sure about how that all happens, how long it would last, or what to do about it. Well, here's the outcome, for what it's worth. The day after I posted, DS15 got the same infection and was tested for Strep (swab, blood, active infection, titers) along with his brother. Strep was negative for both. Spoke with his neuro (Dr. Zinser, Dallas) and he wasn't willing to change anything unless we could confirm Strep in any of us, especially DS15. I was also one of those who caught the cold, but wasn't tested. I figured I would if it lingered or if DS15's exacerbation didn't improve or got worse after a week. We did double his Pen VK for one week (increased to 1000 mg daily), but other than that we just stayed with Ibuprofen and vitamins. The day after he contracted the cold, he also started showing symptoms of poison ivy (airsoft in the woods) on his face and torso, which ended up being quite severe. Two 5-day tapered courses of Prednisone were prescribed (low dose, 25 mg first day) to treat the poison ivy. I figured that and the Ibuprofen would do something to significantly reduce his symptoms, especially tics, but they stayed pretty level for a little over two weeks. Of course, I worried every day that it was going to get worse, or we had reached a new baseline, or it would take weeks to get back to our prior baseline, or we'd have to go in for more IVIG, etc. School was spotty (probably the worst thing when they're in high school). Well, the net result was that we toughed it out for two weeks, but he's finally back to his prior baseline and probably a little better than that. It is so nerve-racking to just wait and see and not respond aggressively to everything this disease does, but I now think that sometimes it's okay. I think the best thing that happened in his treatment was the prompt administration of HD IVIG (within 1 week of PANDAS symptoms). I think it's actually working to shut down the mechanisms of this disease, even if it's only a remission as some believe. I thought Dr. Zinser's approach was interesting, even though I didn't agree with it at first. He seems to go with a very classic PANDAS model. Although he understood that anything that spiked his immune response had the potential to also spike his symptoms, he did not agree with treating a viral infection with abx; and steroids, he said, would only weaken his immune system and potentially increase his chances for contracting the really bad bug, Strep. There certainly was Strep going around at the time. He said we would just have to wait it out however difficult it might be, but that he would consider another IVIG treatment (original started 12/1/10) if he didn't improve after a couple of weeks or so. I share all this because I know every little bit of case history could be helpful to someone. Now, whether this was really the right thing to do or if we just happened to get lucky this time, I can't say for sure. Just looking forward to getting out of this cold/flu season and seeing if we can get some sustained 95-100% of pre-PANDAS baseline for a few months, or maybe forever. It looks like he's even contracted another cold, but that seems to be going away after one day and we've had no increase in symptoms so far. Fingers crossed.

I don't know how long on the Vanco, but if abx are not working the next step seems to be IVIg. If it worked within 2 days in the past, I personally wouldn't let it go longer than 2 weeks without pursuing a more aggressive treatment. That said, I know there is all kinds of blood work that can help get to the root of the problem in case it's not just PANDAS. We had everything under the sun done on our son's blood and spinal fluid, but only to rule out other infections and auto-immune disorders. There are a few tests around blood chemistry that are often done (CaM Kinase, Anti-DNAse, etc.). Don't have any experience with those, but there are those on this forum that could give you a list and explain how the results are used. Above all, please don't let it get the best of you. Your dreams are still safely out of the drain! There are lots of options for testing and treatment that it sounds like you haven't pursued. We all know it's trying and requires a lot of patience, persistence, and faith, but you will get to the bottom of it and she'll be okay. The younger ones seem to respond more quickly once the right treatment is discovered. She has a long, fulfilling life ahead of her. You all do. : )

I've read and it seems pretty common that asymptomatic/uninfected PANDAS children can react to the infections of others close to them. Three of us in the family came down with colds recently which lasted about 1-2 days. No biggie. I seriously doubt any of it was Strep-related. DS15 is on daily abx and Ibuprofen and is showing no signs of illness whatsoever. No fever, no sore throat, no siffles, nothing. As the colds began running their course, he started with a significant (but nothing horrible) increase in compulsive thoughts and associated tics; to the point that we haven't had a full day of school this week. Neuro isn't ready to change abx or increase dosage or even try a 5-day low dose steroid. Says to stay on daily Pen VK (500 mg) and daily Ibuprofen (1200 mg) and to watch over the next "few" days. If we don't get back to prior baseline or if things get worse, it's a second IVIg vs. trying HD abx. Basically thinks it's part of the normal healing process post-IVIg. If it proves not to be, then we act. Says this is one of the most controversial aspects of PANDAS (PANDAS child reacting to infections of others). Have any of you experienced what I'm talking about? Did you treat it? How? If left untreated, was it temporary? How long? Anyone on here understand the pathophysiology of how the above is assumed to work? Why the spike in symptoms w/o the infection? Anyone think this is part of the normal healing process?

As soon as I can find some time (probably tomorrow), I will call the hospital and find out what diagnosis/codes were used. The discharge paperwork we have says PANDAS, but they may have used something different for the insurance billing. We have Aetna, but I know some others with Aetna have had trouble getting PANDAS covered. I don't think any of them are in Texas, though.

Let me add to that. How cool to have your birthday on Valentine's Day! Happy sweet sixteen, Emerson!!!

This has my attention. A Google search on "b cell ablative therapy" yields some interesting results, including research articles. On the surface, sounds like just the ticket for auto-immune diseases like PANDAS. Seems worthy of exploration at least. Would love to see more info and reports like this.

Great question and we've had the same with our son. I agree with the other posts and our doc concurs. As we all know, OCD is very complex and manifests itself in a thousand different ways. He was diagnosed with tics, yet they are somewhat complex verbal and motor expressions; much more like Tourettes vs. simple grunting, twitching, etc. I got to the point that, because of their complexity, I considered them a form of OCD. Asked Dr. Zinser and he explained that in PANDAS there is a significant clinical overlap among tics, OCD, and ADHD. Sometimes it is difficult to draw the line. After examining ds yesterday, he said they are "compulsive tics". If you ask him, he is responding to something specific in his head (thoughts). Fortunately, they are much reduced and very manageable for him. Is the difference between the two really all that important? I don't think it matters much. In PANDAS, the same treatment that addresses the one, helps with the other as well. They remit differently, although I think OCD tends to hang around longer. As I've read, the meds used to treat the non-PANDAS version of each are not effective in PANDAS children.

Yes, he referred to the "research" and the "latest research" during our visit today. I didn't ask him to quote titles and authors, but I can tell by his responses to my statements and questions that he knows what he's talking about. Haven't asked about plasmapheresis as it looks like we won't need it. I think IVIg is usually tried first.

As I posted earlier, our 15 yo son is being treated for his first onset of PANDAS by Dr. Zinser out of Children's Medical Center. Just had a follow-up visit today (2 mo post-treatment) and I can't say enough about Dr. Zinser and the neurology clinic at Children's. We are dealing with a disease where the rule is that you fight tooth and nail to get whatever diagnosis and treatment you can and in many cases it's still not enough. We arrived early, were seen early, and spent a HALF HOUR with Dr. Zinser. I know some of the "destination specialists" (as I call them) do spend that kind of time, but that should be expected after the herculean effort the parents and children make to get there. Whether it's really all that unique or not, I couldn't be more pleased. He has a very sound understanding of PANDAS, fully accepts it for what it is, and aggressively treats it. Combined with our pediatrician, this is hands-down the best care our son has ever received for any illness. Dr. Zinser listens, expects parents to be fully involved, welcomes your research, acknowledges where you are right, and provides explanations where you may not be. I was surprised at how thoroughly our son was tested for every other possible illness and disorder, including Lyme, without us even asking. All the test results were reviewed and explained today. I could go on, but I have to go. If anyone is having difficulty getting the right treatment and would like to consider Zinser/Children's, I can help. Just PM me. I mentioned other parents fighting to get treatment out there and he is willing to consider all cases. PS - Our son received Gamunex IVIG, 1.5 g/kg over 2 days (I know some like to know). Doesn't look like any more will be necessary.

Treading lightly here at the risk of getting skewered. Making judgement calls on when it's PANDAS and when it's just bad behavior is a touchy subject and only the parents can really make that call. However, once these children are at "functioning" level, I do believe there is a level of self-control that they are capable of and they should be held to that standard, whatever it is. My wife works full-time with special ed children at school and their challenges run the gamut, the vast majority psychological. ALL of them have a standard of behavior they are expected to meet and, for the most part, do meet when and as those standards are enforced. The net of it is that they DO understand right from wrong and CAN control their behavior (to some level). The risks of letting the bad behavior run rampant (which would essentially be to condone and reinforce it) when they have the capability to do better are just too great in my opinion. It's too easy to let it be a crutch. At the core, these children are bright, good, happy people with amazing capabilities. I think we owe it to them to give them the best upbringing possible and treat them like any other child where possible.

PS - We also did a 5-week taper of prednisone; starting at 40 mg daily during the first week, then 30, 20, 10, and 5. PPS - Downtime is unpredictable at this point. I would say back to school within 2 weeks would be early. IVIG does a number of their system and with the post-treatment exacerbations, I think you'd be putting her in one day and taking her out the next. Once you feel you're on solid footing and she feels up to it, you could try.

I'm happy to share what I've learned through personal experience and the ton of reading I've done (although admittedly not near as much as some of the others have done, I'm sure). These basics may be helpful. 1- There is a high rate of headaches and vomiting, but it appears these are more pronounced in younger children (< 10 yrs). 2- The above seem to disappear within after 1-2 days of treatment. 3- Time before marked improvement varies greatly, but younger children seem to respond more quickly than older children. It can take anywhere from 2-3 days to 2-3 months to start seeing it. Every case is different as is every child. 4- The typical experience is that it gets worse before it gets better and temporary flare-ups (not relapses) post-treatment are common. So I think it's unrealistic to expect steady improvement immediately with perfect, daily progress. The consensus seems to be that this is actually a good sign, that healing is taking place. 5- After 6 months, you're seeing about 90% of what you're going to get and healing continues to occur up to 1 year. 6- There is a hightened need for vigilance against infection immediately following the treatment and really up to 6 months to a year. I think almost everyone goes on prophylactic abx and some employ a variety of anti-inflammatory measures (IB, diet, etc.). 7- Some pursue multiple treatments anywhere from 1 to 3-4 months apart. This is where those who do can offer better advice. We're making great progress less than 2 months after our treatment and don't foresee any additional treatments at this time. So I don't know under what circumstances those follow-up treatments of IVIG are pursued. Perhaps the children get worse or don't see the marked improvement after 3 months. They may also be dealing with more than one condition. In the case of our 15 yo son, he tolerated the treatment very well with only 1 or 2 vomiting episodes and a slight headache. It was really rocky for the first week after and we also did a steroid burst, which also caused some vomiting. Improvement was minimal and slow for the following week. It was after 2.5 weeks that we really started to see the improvement we were hoping for, although he felt "better" immediately following the steroid burst (color, appetite, and mood really came back). Today, about 7 weeks post-treatment, we are 95% and continuing to make progress. I hope this helps and, again, I know there are others with more experience who can improve on what I've written. I just couldn't bear to see you go without a response. -Mike

Thank you, Karen. Glad to be found. Thank you, too, Kayanne. : )

Thank you, Karen. Glad to be found.

Glad to hear your story and I know very well the excitement of even the prospect of getting the right treatment. How wonderful for you guys. We had the misconception (or blind hope) that our son would be "all better" after two days or so post-IVIG like we experienced with all the rest of his infections. It wasn't until later that we found all these wonderful parents who helped us set realistic expectations. Some do respond that quickly, but I think those cases are the exception. I can be patient as long as the healing occurs. Praying your daughter is one of those lucky ones that responds so quickly.

So glad I found you guys and I really appreciate the warm reception. Thanks for the well-wishes. Courage to fight and courage to hope! That's what we need and I think it can be found here.

Thanks, Denise. I've read a number of your posts and was aware of your upcoming meeting. Kind of exciting. I hope it's whatever you need it to be right now. And thanks for sharing so much of your experience. Wishing you and your loved-ones well.

Thank you for the welcome and, yes, I have been known to have a little fight in me and I feel compelled to do what I can. I have a lot to learn, but I believe there will be those here and there that I will be able to help. As awareness and support grows and with everyone doing their part, I agree that fast, effective treatment will someday be the norm and this won't be such a nightmare. Hope your 13 yo is doing well.

Thanks for the quick note. I'm sorry to hear about your two. Plasmapheresis has always intrigued me and it seems to produce very good results quickly. I too hope that's the case with your daughter and I'm glad my post provided some benefit to you, however small.

Wendy, I have a whole 3 months of experience with PANDAS, but I want to take a stab at this because your post left me a little unsettled. Again, I'm no expert, but some children do remit almost completely with hd abx so it seems to me that abx can help with the auto-immune response. I may be completely wrong, though. Sometimes these abx courses go on for months before real improvement occurs and sometimes the type of abx changes to zero in on what works. Most importantly, I would STRONGLY suggest you follow your instincts and stop second-guessing yourself so much. It seems you may have been down and back on every path over the years, so maybe the second-guessing is a product of that. Only you know. Our experience with our son taught us something that I've never expressed in words before. I truly believe that we as parents, if we will trust it, have something inside us that tells when to fight, when to not fight, and sometimes something in between. With our son's PANDAS, we just knew it wasn't right, not in the long-term plan for his life, and we needed to fight it with everything we have. We simply were not going to take "no" for an answer. Fortunately, we received the right treatment very quickly and we're already back in school, albeit on a half-time basis at this point. I'll be the first to admit that we may be a little naive, but we didn't hesitate to get IVIG for him. I'll leave it up to the doctors to know when to be concerned, when not, or about what. Whatever. I'm not even sure what all the concern is over. Ours wasn't and that course of treatment, together with steroids, has been the key to his improvement. We probably could have passed on the steroids, but it helped calm things down while the real healing from IVIG was running its course. In our case, he responded well but not without incident to both treatments and I don't think we're looking at any long-term or permanent adverse effects. All I'm saying is trust your gut and decide to fight. You seem to be on the fence. If you're looking for someone to push you over, this is it. I hope you can find peace and healing for everyone in your family. I firmly believe it is possible. My heart goes out to you.

Lisa, from all the research I've done and our own experience, I would find a way to start high-dose antibiotics (details can be easily accessed online) immediately and keep her on it for at least one month, but not much longer if there isn't pronounced improvement. In that case, you really need to consider IVIG. I'm not a doctor and other parents here have more experience, so you'll have to take in all the information and seek the best medical care you can find. IVIG seems to have the most success when administered as early as possible.