LNN

My Pandas son's C3D was 50. My maybe-pandas daughter's was 25. So the past 2 years of "Mom, my muscles really hurt" were very real. Sometimes I wonder - if adults got this disease and were able to articulate how lousy they feel, would there be such a controversy? The naysayers can continue to muddy the waters, but the more tests we start to put in our arsenal (Cam Kinase, pneummo titers, C3D, IG sub-classes), the harder it is for them to say Pandas isn't real.

You can check on Friday, but best I can tell, the live video will be from the general sessions held in the Grand Ballroom (which I think is Salon BC). The Pandas track speakers will be in LaSalle BC and LaSalle A. So I'm not sure that the Pandas presentations will be broadcast. (but double check on Fri - I could be wrong). Likewise, double check the list of speakers that will be on the DVD. It's pricey and you had to have your slides in by a certain deadline if you wanted them on the DVD. I know Dr L/my slides didn't make the deadline. So double check what's on the DVD before you order. Sounds like lots of good presentations will be captured, but didn't want people to assume every presentation will be on the dvd.

My son was 6 when this hit. My maybe-pandas daughter was 3. We not only named the OCD, we turned them into characters. Drew pictures of them, demonized them. Like Gina, we'd do lots of positive talk "I know you are strong. You can do it. You can show Stupid Guy who's boss." Used the tools in What To Do When Your Brain Gets Stuck (delay was a favorite). My 3 (now 5) yo is all girl. So we invented "fairies" who tried tricking her into being afraid of something or having to do something as a way to get her to pay attention to them. These were selfish, evil fairies who didn't care about her, but only wanted to tease her and trick her into losing her play time by paying attention to their lies. When she got really distressed, I'd say "it must be so hard having someone else be the boss. Those fairies need to be stomped on and squashed. They're making you so upset." Then she'd stomp on those imaginary fairies and delight in making them wait till the count of 10 until she indulged in a compulsion. When she felt really defeated, we tried to get her to summon an angel to help her (because everyone knows that angels are bigger and stronger than fairies). Still not sure if she's Pandas. But her OCD only seems to come in the winter and then a few months later she can hardly believe one of her fairies was so strong. It seems absurd to her. So doesn't seem like regular OCD. If you create a fantasy world where they conquer the fears with their super powers, they buy into it surprisingly well. I actually think ERP is easier with little ones. You just have to take the adult concepts and weave them into a good story.

I just got an email from a mom in Seattle who's attending the AO conference and wants to meet other parents. I emailed her the blue Project Pandas logo to print and put on her lapel. But also said I'd ask if anyone had plans to meet up somewhere (a lunch site? the registration table at a certain time?). Any thoughts?

I believe Dr Cunningham and Dr Swedo will give a medical explanation of what's happening in the brain Dr Trifiletti will discuss the "non-classic" ways Pandas/Pitands can be triggered and can manifest Dr Latimer will discuss the things she looks for in diagnosing and treating (I add a brief piece at the end about my son's symptoms and treatments to make the clinical more personal) I believe Dr Bouboulis will discuss the immunology piece and Lynn will share her personal experiences. Beth Maloney will speak on Sat about her story. Will you learn something that you don't already know from this forum? Don't know. I know my personal goal (aside from not getting too tongue tied) is to mention those small details that make a parent say "aha" or help an autism doctor recognize things that could be Pandas. You guys probably won't learn much from me. My guess is that you'll hear things that will let you see a particular doctor's take on diagnosis and treatment. But if I had to guess, this is to help educate an audience that knows little about Pandas. Pandas 101. Probably not for those already working on their masters in the subject. But I could be wrong. It looks like you may be able to see a webcast, but I don't know the details.

I don't know if you can look at everyone's stories and get a one-size-fits-all solution. I think you need to get a detailed picture of your own child and then use that to guide you. Since you feel confident in a Pandas diagnosis, I don't know that a Cunningham test would add much to the picture. I think I would have a second ASO and anti-D Nase B titer test done so you can see which direction they are headed - still elevated or on the way down. Then I'd have an immuno work up done - IG sub-classes, pneumococcal titer panel, C3D - those were our tell-tale results. I would also have both ELISA and Western Blot tests for Lyme to rule it out, plus mycoplasma. I'm sure others can suggest additional tests. If you find evidence of immune deficiencies, you can feel more comfortable that IVIG is a logical treatment that will likely address the problem. If you find evidence of co-morbid infections in addition to the strep, you can pursue antibiotics that are targeted to that particular bacteria and if you still see evidence of strep (rising titers), you can try prophylactic abx -or perhaps some combination of the above since it's rarely simple. But I'd suggest additional testing to help you chart your course. You can't base a decision on what's worked for others - it needs to be based on the particular child. Then you need to follow your heart. Best, Laura

Karmen, Based on the recent spike in symptoms, I would take him in for a strep test. If he has an infection, you certainly want him on antibiotics quickly. But since you say you're fighting an infection, (hopefully on antibiotics?) don't be dissuaded if his culture comes back negative. Some kids become "canaries in the coal mine" and can react to being exposed to someone with strep without actually getting a strep infection themselves. Everything you mentioned - his Cunningham results and his sudden onset, would make me pretty certain it's Pandas. Once you know that everyone in the family is strep-free, you might want to consider a course of prednisone to stop the Pandas cycle. Some feel comfortable with a 5-10 day course (which is the time it's commonly given for poison ivy). We've had better success with a 3 week course. But either way, it can be very helpful in stopping the episode. You can also give ibuprofen - it may help.

I'd ask for the results. We had a quantitative IG just prior to pex and everything was normal. I interpreted this as meaning no immune issues. Later, we had the pneummo panel and that's when we saw the specific deficiency. So I'd just double check what was tested. May not change your path, but you don't want to make an assumption about what's been tested. It sounds like there's still more digging to do. Like you said, the 3 weeks of improvements let you know what's possible. Hold on to that.

DCmom took a lot of words right out of my mouth. I have lots of respect for Dr L and the thought she gives to each case. I really value her opinions. So if she's seeing IVIG as the logical treatment due to the antibiotics issues, I'd give that some serious consideration. Like DCmom, I'd also wonder if there's more going on with the immune picture. If so, IVIG would make a lot of sense possibly for other un-defined issues in addition to the Pandas. I share your concerns with IVIG - it's a human blood product. There's that miniscule risk that it could contain a virus that hasn't been discovered yet - that it has something they're not screening for. Let's face it - it's not like our kids are particularly lucky when it comes to health issues. And then there's that little detail called money. I know some feel that IVIG is perfectly safe, but it's always scared me a little. So I can relate to your concerns. That being said, after almost 2 years of trying alternatives, including prophylactic abx and pheresis, we have finally decided that IVIG is the only chance my son has at beating this thing. Pheresis helped a lot. But we found out later that my son has what's called a specific antibody deficiency. He failed 13 of 14 on his pneumo titer panel. He's had a negative ASO test after scarlet fever. His body just does not produce sufficient levels of antibodies to strep. He's now a canary, so prophylactic abx helps prevent a cold from turning into something more serious, but it can't protect him from other sick people. So our best hope is that a high dose IVIG treatment will give his immune system the support that he was born without. I don't know that I'll ever be 100% comfortable. I know on the day they insert the IV, I will be praying with all my might (and I'm not known for my religious streak) that the people who have helped create that bag of immunoglobulin were all healthy. That it works. But I also know the dangers of continuing to live with the threat of recurrent episodes. It costs my son dearly, especially academically, but also socially. And it costs my daughter, who finds herself on the receiving end of unpredictable and sometimes mean behavior. It's no picnic for the marriage either for that matter. So we will make the leap of faith and do what we have to, knowing there is no perfect answer and no single answer for everyone.

I agree with Stephanie 100%. If you had something wrong, wouldn't you want to know "it" had a name and that "it" could be treated? My son knew something was very wrong, and it really helped to know what it was. It made him feel like he wasn't crazy and that people where working hard to help him get better. We explained it like being allergic to strep (he was 6 - couldn't get into anything too complex). Knowing the enemy takes away some of the fear and the power "it" has over you. As for it being a license to misbehave, ds tried that excuse once. But I made it clear that while he couldn't help the fact that he had Pandas, he was still responsible for his actions and there were still consequences. I might be more understanding about a rage, but he still lost tv or some other privilege if he didn't take steps to minimize it (it's ok to pummel a pillow or punching bag, never ok to pummel little sister, disease or not).

We have a lot of experiences of tics - twitches, jerks, half-cough, echolalia, throat clearing, humming, eye blinks - if I ever had the guts to film them at the time, I'd have a you-tube library. After pex, we haven't had any tics, but you know that every throat clearing when he was sick sent me into orbit with fear. But they never amounted to anything other than a once or twice sound, same as any other non-pandas kid. Then this spring, pandas son starts struggling with allergies for the first time ever. His sister, who has debilitating allergies, isn't clearing her throat, but my son starts doing a near constant clearing. But no pandas symptoms. So I'm watching like a hawk, telling myself to relax (ever notice how CBT is a lot harder when you're the one trying to do it instead of being the coach?). I try to remind myself that even I am coughing and clearing my throat to the point of annoying my office mates due to allergies. I'm starting to worry until a neighbor's daughter comes over and she is also clearing her throat constantly from allergies. The two of them sounded like they were having a concert. Everything my family is allergic to is done blooming now and no throat clearing. So my point is, even Mr Tic himself, a classic Pandas kid, can get throat clearing or coughs and it isn't necessarily because of Pandas. Some coughs are just coughs. Would I recommend a strep test? Sure. It would be foolish for you to know what you know and keep it to yourself. But I wouldn't panic. If it is Pandas, it will unfortunately show in other ways. I'd just keep tabs and check in in a few weeks. If she needs you, you'll be there.

Nice job! Thanks for being willing to share your story - you may never know for sure, but I'm betting you helped more than one family and maybe a few doctors!

Super job! You captured a parent's frustration perfectly - ask for an anti-psychotic and it's yours, no questions asked. Ask for antibiotics and they look at you like you've just asked them to give your child crack cocaine. Hopefully some kids who are suffering with mis-diagnosis will be helped when their parents read your article. Laura

Muscle pain is a frequent complaint of my ds. Immuno testing showed high C3D compounding - not exactly an expert on this, but it's apparently a general symptom of many autoimmune diseases. If you google C3D, you get lots of hits about rheumatoid arthritis. Mu general understanding is that the compounding shows that the immune system is attacking the body and causing muscle pain. You'll often have high C3D with bad allergies and it's part of the reason you can feel flu-like muscle pain at the height of allergy season. So the muscle pain may be a sign that you're dealing with an autoimmune response. I'd try regular (every 4-5 hr) doses of motrin for several days and see if that helps.

We've been lucky in that my ds (7) doesn't realize there's a stigma associated with OCD. We've always presented PANDAS as an allergy to strep that produces nasty symptoms. But I do realize that as he gets older, he may hate the idea of being "outed", so I don't use his real name and usually just refer to "my son." One thing that has really helped him is to know other kids who have Pandas. He's met one boy in our town and met one boy at Georgetown when we were there for Pex and he knows he'll meet a few others when we go to the OC Foundation conference in DC in July. So he doesn't feel like his condition is so rare. Plus, one of his good friends has non-Pandas OCD, which we never would have known if we ourselves hadn't been open about Pandas. We take the approach that people can't help you if they don't know you need help. And there are other kids who could get real help if we share our story. Still, it's so important for teens to fit in. So I get how the thought of talking about something that singles them out could be painful. We're talking about a group who thinks acne is an end-of-the-world event, so I can understand how talking about OCD and tics would make them want to crawl under a large rock. I guess my suggestion would be to see if you can compromise - respect his privacy, especially in your own hometown, but explain that certain people, like teachers, may have to know, the same way they need to know about kids who have hypoglycemia or asthma. Then explain that you too have a need/right to have a social support system and talk with other people who understand what you're going thru. Promise not to use his name or divulge anything too personal. See what he's willing to share and what things he considers absolutely off limits. Then stick by that agreement. As important as it is to shout from the roof tops, having his trust as you approach the rough teen years is far more important.

Both of my kids tested high for C3d complexes - one had Pandas, the other does not but has severe environmental allergies. I don't know much about it, other than it seems to confirm that the frequent complaints I hear about muscle pain and fatigue are real and are the result of a non-specific autoimmune response. Would love to know more.

This is a workbook and was very helpful for my son. It gave him a vocabulary to talk about what he felt and "exercises" we could work on together. It also helped for him to know he wasn't alone - that other kids have OCD. We started a home version of CBT when my son was 5 1/2. It's been hugely helpful. His imagination and willingness to believe in the magic of thoughts actually worked in our favor. The trick is that you have to present the CBT concept in terms that young kids can understand. So I read CBT books and then told him about the ideas in my own words. We named his thoughts/emotions - we had Warren the Worrier and Edgar the Angry - and talked about his feelings (the tantrums, rages, fears) as if they were other people. This helped so I could get mad at the disease/"people" without making my son feel that I was mad at him. Then we worked on teaching my son how to control these "people" - maybe he couldn't control feeling angry, but he was held accountable for what Edgar the Angry did and said. We talked about how awful it was to have "someone else" in control and that we knew my son was brave enough and strong enough to learn how to be the boss. We also talked about how adults couldn't be the rescuers. He had to teach the bad guys to be afraid of him, not afraid of the grown ups. Feel free to PM me if you want details of what we did. But I highly recommend CBT and ERP - for young kids I think it's just a matter of finding ways to help them identify with the concepts. In some ways, I think they're better able to embrace the ideas than older kids or adults, so long as it's presented in a way that they can apply it.

Glad to hear you're seeing improvements! Only you and your daughter can decide if it's right to stay on inositol. But if you do decide to stop, be sure to taper down, don't stop abruptly. Our experience is that inositol helped regulate the amount of seratonin, which is also the problem with traditional OCD. The difference is more that once PANDAS goes into remission, the body is able to regulate the seratonin on its own and you don't need the inositol. Not sure if you've been doing any ERP, but if not, now would be a good time to work on things. Now that your daughter's fears aren't crippling, she may be able to face her fears and get some success under her belt. It's a good confidence builder for both of you if you can know she can learn how to be the boss of her own feelings and not let OCD be in control. For us, the inositol helped us thru the worst, but the ERP has helped with long lasting results. Laura

I mean this in the most positive of ways, not as a criticism. But instead of spending energy on worrying about what the negatives prior to the appointment, I'd put energy into organizing your information so that you can paint a clear, concise picture (this goes for any doctor). Put together a table or list of illnesses and the corresponding symptoms, or lay things out on a calendar, or a chart. List healthy times too (if there've been any). Make note of any significant illnesses in the family or in school during the same time period. Then make copies of any blood work, copies of doctors' records. Make a checklist of the symptoms or behaviors that make you suspect PANDAS. Then organize it in a way that a doctor can glance thru it and get the picture. Show it to someone and ask them if it makes sense. The more prepared you are, the better any evaluation will go. Dr L has a checklist of things she'll ask you about OCD behaviors, tics, severity, etc. She'll also do a neurological exam to look for chorea and other signs of issues. She is very thorough and IMO is interested not necessarily in diagnosing PANDAS but looking uniquely at your child and diagnosing what is going on with each child, PANDAS or otherwise. I know at least one parent felt she made an incorrect diagnosis and got a PANDAS dx from a second opinion. But that doesn't mean she's going to look for reasons to discount PANDAS. Each case is different. Aside from Dr K, she has probably seen more PANDAS patients - and confirmed that diagnosis - than anyone. So I would encourage you to focus on what you can do to help her understand what you feel are the main issues in a short period of time. Try not to tie yourself up in knots over worst case worries and just be as prepared as you can. As for therapists, I would absolutely pursue interviewing therapists now and not waiting. We have had tremendous success with both CBT and ERP. It helps immensely during PANDAS episodes but it also helps in every day life, because it gives the whole family a vocabulary and coping skills for managing worries and feeling empowered. It may not "cure" the OCD, but like antibiotics, it helps make things manageable, and the more you do it, the easier it gets. I would start by going to www.ocfoundation.org and going to the tab to find therapists in your area. Look for a therapist who's a BTI graduate - this means they've completed training from the OCF specifically for ERP. Many doctors tell you they do ERP but the BTI certificate means they've had specific training. You also want to call ahead of time and make sure the therapist has experience with young children and that they're willing to include you in a part of each therapy session - you will need to be trained in how to do ERP at home and participate in whatever plan you come up with for your child. ERP isn't something you do for one hour a week. You have to do it constantly. So the therapist needs to teach you how to be a coach and teach your child how to be the boss of OCD. It sounds like you are doing the right things and planning ahead - both of which help you get a handle on things. Keep going!

Welcome back, Buster!

Amen to that! You will eventually see "normal" again and enjoy periods of remission and/or cure. But you could also come out of it with something else, just as sweet as the appreciation for "ordinary." Kids who have to grow up quickly due to tragedy or struggles, kids who learn they aren't like other kids for whatever reason - can develop an inner strength and wisdom. For awhile, both my son and I went thru a period of mourning. it wasn't fair he was being robbed of a care-free childhood. But then we spent some time talking about a girl in his school who will be in a wheelchair for life. The school had just gotten a new playscape and it was the focus of great fanfare. My son was feeling sorry for himself - it wasn't "fair" that he had to have PANDAS. But we talked about how it wasn't "fair" that Helen could only watch the other kids enjoy the playscape and how she'd trade places with my son in a heartbeat. It took awhile, but I think he now understands that there are a lot of people who are worse off than him and that if you look carefully, there can be gifts that come with the hard times. He also enjoys it when I tell him that PANDAS kids have better memories than other kids, that they are braver, that they often have close families who can talk about hard things, that thanks to ERP, he knows how to be the boss of his feelings and thoughts way better than many adults...He's achieved so much not just in spite of PANDAS but also because of it. Believe me, I'd happily not have PANDAS in our lives. But since it's here, we have found some unique things to be grateful for.

This was our approach too. We did tell teachers right away - my son had violent tics that were obvious, so we pretty much had to discuss it. We told close family - but they are all long distance, so it was an fyi - not something where we had to justify behaviors. But we didn't discuss it much with neighbors or parents of my son's classmates. We knew that he would get better and that years from now, he might not appreciate that people would still remember him as the kid with OCD and tics. We felt we owed him the right to his privacy. I did tell some parents about PANDAS - but in general terms so they'd be aware of the disease. I didn't get into details about rages or specific behaviors, because the few times I did, I got that look that let me know I sounded like I was making excuses. There are some things that people just cannot understand unless they live it. So I was all for raising awareness, but I tried to balance that with a respect for my son's privacy. Like Vickie, I am more open when we are in a good place. Then I can come across in a more reasonable manner, without sounding like I'm in denial about my child's behaviors. I try to discuss the disease as it may apply to all children, but I only share details about my son on a "need to know" basis.

Funny you should post this today - it was a topic of conversation in our house this morning. We are going to do IVIG for my son (7) who's been battling PANDAS for almost two years. We did plasmapheresis last August and it helped a great deal. It got rid of some pretty severe tics. We had two exacerbations this winter due to exposure to strep (not actual infection thanks to prophylactic antibiotics). Both were brought under control with prednisone. Since pex, we've seen the severity of an episode drop dramatically. But since he's now a canary and we can't possibly keep him free from exposure, we know that more episodes are in our future if we don't take the next step. But since he's currently in remission, we have the luxury of choosing when to do the IVIG. We considered the summer, with the thought that months of "calm" and no pressure of school would be a good time to both "stir the pot" (knowing there's a chance he will get worse for a few weeks post-ivig) and a good time to heal. But the flip side is that if donor antibodies are only in the system for a few months, then doing IVIG in the summer might be a waste. If the IVIG antibodies are "tutors" meant to go in and re-teach the immune system, and there's no exposure while they're hanging around, then does the immune system really get taught anything? Is it better to wait until the fall when the tutors actually have a real germ battle to fight, so they can impart some real wisdom to the immune system before they fade away? I asked two of the PANDAS doctors I've worked with and both had to stop and think about it, since usually you do IVIG as a triage - when your child is in crisis. Time of year isn't really something they thought about. But both came back with the same answer - if they could chose, with no crisis dictating treatment, they both said they'd do it in the fall, so there was a boosted immune system just prior to the germ onslaught, or in the winter. This is just an off-the-cuff answer. It wasn't backed by any research. But the idea of the large dose IVIG being used for PANDAS is to shut the immune system down and re-boot it, to demolish the old antibody factory that's been making faulty strep antibodies and start up a new factory with workers that know the correct recipe for fighting strep and not the basal ganglia. (Conversely, early summer would probably be ideal for pheresis, to let the system stay calm and unexposed for as long as possible). I'm not suggesting summertime IVIG wouldn't work. It was only a hypothetical conversation and I'm sure there would be lots of circumstances where any time would be appropriate, or where waiting would be ill-advised. But in our particular situation, with our particular history, it seemed to make sense for us to wait until late September. Yes, it will screw up school, but barring any crisis, that's our tentative plan.

try this http://circ.ahajournals.org/cgi/reprint/119/5/742.pdf Buster's link had a parenthesis at the end that made you get a "page not found" error.

I personally have a voodoo doll of both the school nurse and the school principal, and a box of long, sharp hat pins I use to "channel" my frustrations! I try to work under the radar and forge good relationships with the teachers. The administrators will never get it, at least not in my town. They see "accommodations" as a legal word and $$$. The teachers mostly just want to help my son learn.