LNN

Smarty, I'm sorry your having your own crisis. It's just exhausting. Thanks for the food for thought re: the BBB. I try to wrap my brain around it, but some days, it's hard to feel scientifically curious when I just want to pull the covers over my head and pretend my son is baby again, before I ever knew about any of this. Today was one of those days. I've never heard Dr K's medical theory on what "turning the pages" actually is. And I've never been able to get anyone else to explain it either. It's sort of a black box, and I often feel like I'm in the 15th century when it comes to this. I never have the feeling anyone understands why or how IVIG is supposed to work, only that it does seem to help a number of patients. It's not something a Type A control freak like me finds very comforting, especially at dark times. We are seeing resolutions of things. That's easy to forget sometimes. I'm not sure if it's from the IVIG or simply an episode waning in it's natural course. My real goal for IVIG was a re-boot to make this winter easier, so I won't know if it helped in that way for some time. But yes, things are generally better than they were a few weeks ago. Now here's the weird thing...for the past two weeks, my son has been doing some pages from last year's school workbooks as a way to get his brain back in gear for school. He's always been strong in math (reading is his nemesis). But in the past few days, it suddenly got very very hard for him. It was scary. This morning, before my last post, I had asked him to do 5 simple math problems, with Dunkin Donuts as a reward. It took him 10 minutes, most of it spent with his head on the table, whining, negotiating, arguing and telling me it was too hard. I gave him Motrin (we've been dosing 3x/day for the past two weeks to help with mood) and we went to DD. An hour later, I asked him to do another 5 math problems. It took him less than 2 minutes, he banged it out with hardly any hesitation, and looked at me like "why was that so hard an hour ago?" So something inflammatory is wreaking havoc and at this point, I'm beyond caring what that something is. My son's been on 800mg/augmentin daily for 10 months. His past three episodes in that time have been from exposure, not full infection. I just want him back. I get to see glimpses of a bright kid, like this morning, and then throughout the day, he drifts away. I can now tell when the motrin is wearing off. It's like clock work. It's like watching alzheimers take over - his cognitive abilities change that drastically from "on" to "gone". (these rapid improvements, in conjunction with his amazing improvements on prednisone tapers and long term high dose abx, to me suggests that Lyme is not likely, but I haven't ruled out an Igenex test). If anyone has any good info on anti-inflammatories, would love to hear it (but it has to be a pill - neither kid will touch food that is remotely healthy, so no natural flavanoids or dietary changes for them - if it can't pass for junk food, it's doomed).

We are 6+ weeks post-ivig and I am right there with you. Some days I've sent emails with joy over improvements and today I had to be talked off the ledge, tears flowing, because of sudden struggles. It feels like being at the beach - some waves make you smile and you drink in the smell of suntan lotion and the sound of the gulls and the warmth of the sun, and then all of a sudden a big wave comes and knocks you off balance and you find you have a pound of sand in your bathing suit and salt water in your mouth. None of what's happening is making any sense to me. "Turning back the pages" just isn't a good enough explanation. What the heck is really happening? Is this a failure? A temporary set back? Is there something going on in conjunction with the Pandas (lyme, exposure?). I try not to look at any one day and try to assess a week at a time. But today has me feeling pretty low. Let's all hope our kids catch that break they so deserve - soon!

it was explained that the bladder has two controlling sphincters. The internal sphincter controls the bladder's ability to expand as it fills. The external controls the actual emptying and stays closed until you decide to void. Pandas effects the internal sphincter and it loses its ability to expand, so the bladder is always feeling full, even as soon as the smallest amount of urine is present. It's a very real, physical symptom, not just an OCD thought or sensory issue.

#8 - options are 2 months to 6 months 1 week to 1 month Our worst times typically lasted 6 weeks. Can you modify to cover the period between 1 month and 2 months? e.g. 1 week to 1 month/Between 1 month to 6 months or 1 week to less than 2 months/2 months to 6 months? #13 confuses me. Prednisone has been effective/no relapse for that episode but obviously didn't prevent a subsequent episode a few months later. ERP and CBT helped make the next episode less severe, but again didn't prevent another episode. Yet it feels wrong to say the improvements weren't "sustained". The benefits did last, but alone can't prevent another episode. Perhaps something like "effective but didn't end episode" or "effective/ended episode" -or- if the question is directed at seeing if the treatment was a "cure", then maybe CBT and ERP should be removed. I'm not sure if "no relapse" means no relapse ever or just no relapse within that episode. Also, we're too soon after IVIG to be able to say what the results were. Could there be a "waiting to see" response? I answered in terms of one episode (e.g. prednisone "effective/no relapse" pex "effective/no relapse" because they ended that episode. But obviously, we're still fighting this battle and they weren't a "cure" for us. #17 - would love an option of "pediatrician open to Pandas but uncomfortable treating" to underscore the need for guidelines for docs to follow. Mine didn't like winging it. So we do a lot of traveling to the specialists. Thanks!!

I think the idea of journaling is great - you could also pursue getting articles published. For interaction, you could also participate in a local support group. I used to belong to my town's support group for parents of kids with special needs and the most powerful meeting was when a graduating high school senior came to talk about his experiences. As you can see from this forum, parents need help understanding what's going on with our kids. You could also make presentations to schools to let kids know they're not alone. Approach local therapists - perhaps they have group sessions of teen patients who could really benefit from a peer presentation. These would be one time commitments but would take time to prepare and would get you out in the community. As for the job, I'm in CT and looking for a new job too, in some sort of advocacy position or working with struggling kids. So while I don't have a job for you, I'll happily share any leads or ideas...

Emerson, This is serious - really really serious. PLEASE get your mom involved and show her your post, tell her what's happening. This can quickly turn into a life threatening condition. You are not doomed to suffer. Antibiotics, anti-inflammatories, proper medical treatments WILL bring you relief. But sitting in your room forcing down a few spoonfuls of mashed potatoes will not. This is urgent! Laura

I can't advise you on shots for your Pandas child - that's a gut call as far as I can tell. I will tell you that allergy shots for me (pollens) did wonders. Just about eliminated any sense of having allergies at all, even this very bad spring. My daughter (5) started shots in May (previous springs, her eyes would swell shut). She has done awesome - her summer allergies are less severe and I think by next spring, she'll have a far better quality of life. But she is only a question mark for Pandas - something makes us go hmmm and she has GI issues that may trigger episodic OCD - nothing definitive. That being said, I don't know how I'd feel if my Pandas son needed shots. I know he can get a cold like normal people - so his immune system seems to fight viruses normally. It's possible he'd also do ok with shots. Perhaps it's just bacteria that confuses his body. You could always stop at the first sign of anything bad and use a prednisone taper to halt a pandas episode. But you will have to do a gut check and do what you think is best. BTW Faith - you may hear more about sinuses from Dr B patients because he looks up people's noses for a living. The neurologists we've seen didn't spend a lot of time, if any, checking my son's sinuses. But it's the first thing my allergist does after he finishes saying hello. Similarly, allergists aren't checking reflexes and milkmaid grips. I would expect that your line of investigation is guided by your specialty.

Thanks Wendy. My son has been on antibiotics daily since May '09. Prophylactic zithro until Oct 09, 800 mg/day augmentin since Oct 09. His Lyme test was Mar '10. So over 6 mos. high dose abx before the test. Yes, we tested for co-infections - all negative for both kids. Given all this, things point away from Lyme. I keep thinking about his response on prednisone. But the cognitive fog piece makes me want to make sure I don't over look anything. I'm just not clear how the daily abx and elevated complexes effect results.

Thanks everyone for your help re: lyme testing. I keep reading posts that if your child has elevated immune complexes, you can get a false negative on lyme tests. Is this true for all the tests (Western Blot, ELISA and Igenex)? Or will Igenex, by nature of covering more antibodies, still give you reliable information? Son - definite Pandas. C3D = 53. No positive bands on Western blot or Elisa. Previous joint pain and cognitive fog but joint pain has resolved post-ivig and fog is improving. Previous prednisone tapers (3/4 weeks) have made him sharp as a tack (can I assume this wouldn't happen if he had Lyme?) Daughter - episodic OCD but no definite link to infections, reflux and GI complaints (seeing GI specialist in 2 weeks), eosinophils normal, no clinical lyme symptoms, no joint pain, no 4 week cycle of behaviors, but C3d = 25, P41 positive on western blot. Could be H Pylori - past or present? We'd need to wait another 2 months post-ivig to do anything on my son, but I'm concerned that high complexes might make the results unreliable and don't want to throw away $400 to test both kids only to get a piece of paper I can't count on. Anyone have any input?

For those interested in a great lyme website, go to www.ilads.org Under the treatments tab, there's a paper by Dr. Burrascano (one of the Dr K's of Lyme) Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses by Joseph J. Burrascano Jr, MD It's a very good diagnostic summary (where you will see many Pandas-like symptoms). Toward the end, there's also a good summary of supplements, including doses and suggested suppliers, on: probiotics, vitamins, alpha lipoic acid, vitamin B, Magnesium, essential fatty acids, Fish Oil and others. Kim - you will never see a doctor or diagnosis the same way after reading Cure Unknown.

Wendy, When you refer to Pandas kids 'herxing" - is this your feeling or is there research that supports this? I'm not trying to be argumentative - it's hard to convey tone of voice in posts. I'm genuinely curious. Some of our Lyme-literate members have posted that strep does not produce a herx reaction. On the other hand, I know strep does produce the rash of scarlet fever due to exotoxins and die-off. But whenever I've googled herx, strep is never mentioned. I also believe (tho I'm not absolute) that my son's last episode - the one he was having as we headed into IVIG in June, was triggered by exposure, not by direct infection. And yet weeks 3-4 post IVIG were bad ones. In his case, I don't believe herxing would be responsible for his behaviors. Curious if this herx discussion of late is "gut instinct" or based on what you've read somewhere. Thanks, Laura

How do we know if our pandas children are being little turds or is it really pandas and they cant help it. Ah, my husband's sentiments exactly! We're 5 weeks post-ivig. Weeks 3-4 were low points for us. One day took us back to a very dark place. My husband had to walk away before he said things he couldn't take back, both kids were crying and screaming and for the first time ever, I cried in front of the kids because I couldn't take it. The recovery with Pex and even with prednisone is so much easier than recovery with IVIG. Finally, 3 days ago, things started to look like they were turning a corner. Not an on/off switch - more of a dimmer switch, with things getting brighter. I wish I could tell you why the IVIG recovery seems to follow this pattern for some and not for others. I wish there was some scientific explanation for what high dose IVIG does, for what "flipping the pages" is. It's a lot harder to trust in something that no one can explain to you with certainty. And even after all of this is behind us, I still won't be able to have any confidence that it "worked" long term, will still hold my breath all winter long. For now, I can only hold on to success stories and the anecdotal support of doctors telling me this is the right course for our particular situation. I hope your son turns the corner soon. We've been doing Motrin 3xday and that seems to help with the irritability and mood swings. Hang in there.

Kristy, Welcome to the forum. My son (who will be 8 in Sept) also got Pandas in the fall of '08. Last summer, we did plasmapheresis, which greatly helped with tic symptoms. Unfortunately, it did not prevent an exacerbation due to exposure in the winter. It wasn't a simple decision, but we finally decided to do IVIG 5 weeks ago. After 5 dark weeks, we are starting to feel the tide turning and seeing some really cool stuff (mostly in the last 2 days). But I won't be able to tell you if IVIG did the trick for at least a year. I don't know if IVIG is "the" trick. And please realize that not all kids who've had IVIG in this forum are dealing with "pure" pandas. Some found out after IVIG that their kids also had Lyme, likely impacting the efficacy of IVIG. A few have autism. Some have mycoplasma. Some were re-exposed to bacterial infections soon after IVIG. So you have to know the full story before you can just say whether IVIG "works". Each case has to be taken in context. Try not to get too worried when you read about mixed results. There's often more at work in any child. You just have to do your own research, make sure you know what's going on in your child (rule out lyme, mycoplasma, immune deficiencies), consider insurance and financial realities and then make an informed decision for Your child. If you haven't read them, there are some very helpful threads posted at the top of the page of the PANDAS forum page. You will find a Q&A, a treatment decision tree, some history, a list of doctors by geographical region... Also, don't get too discouraged about your daughter's school performance. I struggle with the same issue, but am always amazed during our all too brief remissions at how much my son really has absorbed but just can't show when he's sick. And I'm not the only one who has this experience. Again, welcome. Laura in CT

Dancing again and parasailing? Now that's a pretty good success story. You need to write this down for Dr L to share with the Georgetown board of directors so they can feel proud of their courageous treatment decisions and you need to share this story with the idiots at your favorite insurance company so maybe they'll appreciate what a difference it's made. Soooo happy for your whole family! Take lots and lots of photos. These are precious memories!

Let me put this in perspective. First, it is only my understanding of the topic. I am no expert on OCD and a real novice at ERP and CBT. Not all of it is backed by footnotes I got from research. Second, the intended audience was the parent in the room who came to the conference knowing their child had OCD, but wondering if it might be caused by PANDAS. The audience was not the PANDAS veteran. SO I focused on OCD aspects of Pandas. You won't see mention of tics or adhd. Traditional OCD kids can have these too, and I was only trying to highlight the differences. Third, some of us on Latitudes belong to another OCD forum and we "scan" for Pandas cases, then refer them to Latitudes for guidance and support. There are certain things in a newcomer's post that are red flags. I decided to summarize those flags so that a parent might have some quick card they could reference to see which side their child fell on. This was an OCD conference, so I focused on OCD aspects only. It isn't intended to be a diagnostic sheet. Please use it or share it if it's helpful, but it's not "gospel". (However, with enough positive posts, you can tell someone it's been "peer reviewed"

Ok, I feel less old. Thanks. But consider this - the best college professor I ever had was an intense, passionate, cranky old man who had served as an undersecretary of commerce under President Johnson. He had traveled the world and taught about understanding different cultures and fully grasping what made people in those cultures tick. He was amazing. He once confided that he would never have become what he had, would have never have lived the life he had, if he had not had a debilitating disease in childhood that kept him bed0ridden for two years and required several years more to recover. During that time, he could not participate in regular kid activities and he had to read as his only activity. That forced him to learn much about a wide range of things. So it was his hardship that made the man. I saw a show on the history channel the other week about Tesla - not only was he a great inventor and scientist, he had a generous spirit and wicked OCD and adhd. He probably had Pandas (seriously). His OCD made it impossible for him to marry (women wearing jewelry repulsed him). But it gave him endless time to spend int he lab. And we all benefit. Sometimes gifts come disguised as struggles. Your Pandas has driven you to great introspection, and we are all benefiting from your insights. Don't mean to offend you in any way, but I think that boy is pretty wise. He just might be worth a second look

Mary M - we have the same anniversary week as you. We will be 5 weeks post-Ivig tomorrow. And we have had the same experience. The past two weeks have been particularly stressful. One day last week took us back to a dark place we hadn't seen in almost 18 months. When I mentioned to Dr K (who is not our doctor) at the IOCDF conference, he was of course thrilled (you know what I mean). He also thought it was an excellent sign that my son had a fever during day 2 of IVIG. Of course, he doesn't know our history, so I take this all with a grain of salt. But when you're feeling at the end of your rope, you take what reassurance you can get. We do see glimpses of sunshine. I hang on to that. McNuggets - I'd suggest reading some of the ERP threads, especially old posts by Meg's Mom, and get the book "What to Do When Your Brain Gets Stuck". But if you also feel you need something more, and hesitate about SSRIs, you can look into Inositol. It was once called Vitamin B8 and is a "natural" SSRI. You can PM me if you want specific info (kids are flooding the yard right now - this has to be short - or I'd paste the info right now). Please realize Inositol and any SSRI meds may take several weeks (up to 6) to build up and make significant changes. There is no quick fix, or we'd all be on it!

We've done two tapers. In both cases, we started to see improvement within 3 days. Serious (50%?) improvement within 10 days, and 100% improvement by the end of the taper. After the first taper, we could see things ramping up a bit but we did a T&A 2 weeks later and pex a month after that and from there we saw steady healing. After the second taper, we enjoyed complete remission, even the brain fog, for a few months. But then things ramped up from a new exposure. We did IVIg shortly after. I love the effects prednisone have had, but I didn't feel comfortable relying on it multiple times a year. We felt we needed to try to boost the immune system with something stronger. If it weren't for the long term side effects of prednisone, I would've been ok using it as an episodic treatment. And how long from the start of taper till now...6months...9months...1year...i dont remember Can't answer this. Prednisone was part of what brought us full remission (once strep was gone in taper 1). It brought us back to baseline in taper 2 and that did not fade until re-exposure. But we have yet to enjoy 6 months symptom free because we can't seem to keep him away from sick people. (another reason we felt IVIg was our next step, since he is so susceptible).

Ok, I am middle aged and way out of touch. So maybe someone can help me understand. To me, the boy's comments sound like he likes you. I'm not getting why you'd be offended. What am I missing?

Now you listen here, young lady - THERE IS NO SUCH THING AS A NORMAL KID! Not a single person walking this earth is "normal." Not one. And no parent I know would ever want to trade their child in for a different model. There are 20 kids on our little cul-de-sac. Not a single one is as awesome as my Pandas son (except maybe my daughter). Do I wish I'd never heard of Pandas? Absolutely. But not because of what I've had to go through. Only because of what he's had to go through. He is not a burden - he is a gift. I would not trade him for anything or anyone in this world. I know that at 15, you won't understand this. You'll think, oh, well that's Laura. My situation is different. I'm a disappointment or a burden or....(insert negative teen feeling here) and if she knew my family, she'd know what I mean. When I was a teen, I could see lots of things wrong with me. It wasn't until I had my own kids that it struck me. When you have a child, it's like the Grinch Who Stole Christmas - remember the ending where his heart grows? That's what happens. Don't think for one split second that your mom is in any way disappointed in you. She may not always respond the way you wish, but that doesn't mean you don't rock her world.

I think Shelia's book Natural Treatments for Tics and Tourette's: A Patient and Family Guide is a good guide. You want to share stories in a way that readers can see themselves and really get a flavor for the struggles. But I think you also have to offer hope and "answers". I personally couldn't read a book that made me cry but then didn't give me some sort of suggestion for what do do about it. Each story would also have to have some sort of maximum length. It is really really hard to sum up the nightmare. So much has to go unsaid. My personal suggestion is that each story that was included would have to have one or two main points plus a "take away" message. Otherwise, I think the stories would only be interesting to our little community. Maybe Shelia could suggest a contact person with editing/publishing experience who could give some mentoring advice.

EA- you have an incredibly bright future ahead of you! We are all so proud of you!

I may have missed something, but I don't recall her discussing any success/failure rates on prednisone. She did discuss that it's part of her protocol, but it was during an outline of her thinking/steps she takes. It wasn't discussed in depth, although the parent who co-presented did say that they had very good success with tapers (as we have).

For us, CBT has been extremely helpful. ERP is still very hard, especially when the OCD is strong. My son gets discouraged because no matter how hard he tries, it keeps coming back. (i'm also not sure we're doing it all correctly). But I'm starting to view ERP like physical therapy for an injury. If you had a stroke, you wouldn't start out trying to speak in full sentences or walk a mile. You'd start out very slowly and it would be very very frustrating. But you'd keep at it because PT gives you a better chance of regaining a full range of motion and strength. If you re-injured yourself during recovery, you wouldn't give up. You'd have a private tizzy fit and then pick back up. Because PT gives you your best chance at getting your old life back. Like Meg's Mom said, my son only usually has success as the episode is waning. But that sense of success is what keeps him going. In spite of feeling helpless to fight when he's bad, he still lights up and is so proud of himself when he's able to boss back the OCD during his recovery. The sense of moving from helplessness to empowerment is so important to him, since he feels so powerless during an exacerbation. If only for his self-esteem, it's important we keep doing it. We share a vocabulary and even if he fails, it still helps him feel understood when we work as a team. I fight like ###### to get the medical treatment for him because he can't do that for himself. But giving him the ERP/CBT tools allows him to feel like he has a part to play in his own recoveries. It gets very very very discouraging, but we can't give up. It would feel like we were resigning ourselves to losing the battle. I will fight this thing on all fronts, medical and psychological, because I won't always be there and I want him to learn to fight tooth and nail with all he's got. It's going to take him years before he's ready to do calculus. But that doesn't mean we don't teach him multiplication. It's a building process, and like math homework, it's not always easy or fun, but to me, it's a necessary thing.

I'm happy to post my handout from IOCDF but it's a Word table. If someone can help me figure out how to post it, I will. It just doesn't look right if I cut and paste.