Allison

Thanks to everyone for the replies and helpful advice. Been running around like crazy and only just getting a minute to reply at all; and it will be short. Our pediatrician is very well-grounded in Pandas and has treated several kids for it over the past few years. She's as much an expert as any of them, in my opinion. The problem is that my daughter no longer wishes to be labled as having Pandas, nor does she want anyone to think it's "all in her head." She spends her days managing symptoms, and has no diagnosis or treatment plan to bolster her. We are in a strange sort of limbo right now. She starts her Running Start program next week, and she's hoping to be able to drive herself there. I'm available for back-up, as is her father, We are doing everything we can to help her be successful, within limits. We still expect her to participate in our family, be responsible for her self-care, try to be a contributor to the extent she can. Gauging that extent is where we get tripped up, of course. I'm all for building ramps for wheelchairs, but even a kid in a wheelchair has to brush her teeth. It's just hard. No easy answers. No one to tell me how to be a good parent of this kid in these circumstances. I'm trying to stay consistent, and learn/adjust as I go along. Today I'm feeling much more optimistic than yesterday. Who knows what tomorrow will bring? Thanks again for listening and adding your thoughts and Ideas. i certainly appreciate the thoughtfulness behind them. Allison

Hi, I love this forum! I read almost all the new posts as they get sent to my email. I have to resist answering each one personally, or I'd spend all day online! Now it's my turn to post something that's come up for us here. Our DD17 was dx PITAND (myco) last year, we have a totally awesome pediatrician, but were refused IVIG due to lack of "Standard of Care" for our insurance company. We've just been through a several months-long process of working with an immunologist to see if any other disorder could explain DD's illness. The conclusion: Prednisone seems to help, and if low enough dose, she can stay on that while the body sorts itself out. He basically could find nothing wrong, and he's the expert so it has to be true. He does not recognise the validity of Cam Kinase II results (200 -- very high number) or give any credence to PANDAS/PITAND theories. Doesn't even seem curious.... DD is very emotional right now, and so are we. She sees a therapist for CBT, and I get basic parenting advise from my own therapist. BTW -- I highly recommend therapy/counseling for all us parents, kids, and families. I could not imagine going through this experience without professional guidance. It's just too hard otherwise. Still very hard, even with support. Basically, DD rejects the DX totally, and she rejects any whisper this might be psychological/psychosomatic. She still has total faith in the medical expert, and yet he has totally let her down. Meanwhile, her Dr. continues to treat for Pitand, and I have one supremely pissed off teenager on my hands! She is in total shutdown mode right now, after a huge emotional outburst. She's been so good about getting ready for school that starts next week; now I don't even know if she'll get out of bed today. My question is to ask you experts about where you see the illness end and the person begin? I mean, I get that the antibodies are affecting her behavior centers which make it difficult for her to function. But she's almost 18 and I'm being told to exert my parental authority and start expecting her to take more responsibility. I think that's a good thing, but really hard to do as she's grown so dependent on me. And I just don't know how much I can expect of her if her brain is being scrambled! I get the most benefit from hearing from parents in similar situations, and also the one or two young women out there who post from the kids' point of view. Anyone else have similar issues? Oh -- DD also came up with her own DX: AIRP (AutoImmune Response to Pathogen) Thanks for listening!!

My dd16's first PANDAS episode happened when she was 10, and we didn't know it was PANDAS. It was as though she was possessed, although we didn't really believe that literally. I discovered then that I actually had PTSD; something I never knew because it had never been triggered so dramatically. When I was about 6 or 7 my mother had a psychotic episode that landed her in a mental hospital. It was diagnosed as schizophrenia, although that was a good 40 years ago, and I think just about everything looked schizo to the medical world back then. She doesn't have it now, nor has she for over 30 years. In any case, I was, as they say, "scarred for life," by this experience. Although, I never knew that I had developed PTSD from it. When dd started cycling in and out of "loopy land" as I called it, I started freaking out to the point of disfunction, and I ended up eventually talking to a very nice therapist for more than a year after dd went into what we now call "remission." That therapist explained about PTSD, and a little bit about how it works in mysterious ways. I began to see the patterns and triggers, and I learned to diffuse the energy most of the time when dd would start exacerbating over the years. Now that dd is into her second huge PANDAS attack in the past year, I've started back with a new therapist to help with this new level of stress. One of the techniques she uses for my PTSD is "EMDR" (Eye Movement Desensitization and Reprocessing), which is one of the most studied and proven techniques known to science. It really really really really works. I highly recommend finding a trained, certified, and experienced practitioner near you. It really does work. Every time she gets "loopy" or mis-behaves, I'm so much more calm, centered, and in control as an adult. Sometimes I find myself getting hooked, but I'm usually able to catch it and diffuse it before I make things worse for her and me. When dd had her 1 month of Prednisone this past winter, it was like a switch flipped on and we had her back, even better than before. That was a great remission for her, and for us. I also like to think of it in terms of "Re-missioning" our lives. When she's better, even for a short time, we can re-purpose our days to take advantage of the clear time and make the most of it. Those are my thoughts and experiences with PTSD and Remission.

While I'm posting about alternative therapies, I wanted to ask about this one. I just have an instinctual hunch that it will help. Has anyone ever tried it or seen anything about it helping Pandas? Thanks! A

I'm starting neurofeedback sessions for myself and the practioner has some Pandas experience. I was wondering if anyone out ther can share any experience with it? I also found an Australian practioner who talks about helping Pandas kids with neurofeedback, so I think it's something that could help.

What a coincidence! I was just researching this subject in regard to anti-inflammatory strategies for using using EFAs, etc. My pediatrician, who treats many Pandas kids (WA state) said that some of her patients have read and appreciated a book on inflammation, so I looked into it and found a negative review from the Weston Price Foundation Website (http://www.westonaprice.org/Inflammation-Nation-by-Floyd-H.-Chilton.html) Then I went on to read this page from Sally Fallon and Mary Enig: http://www.westonaprice.org/Tripping-Light...n-Pathways.html And here's a select quote from it that explains why our bodies have trouble making DHA & EPA from Omega 3: "Under optimum conditions, adults can make both DHA and EPA out of linolenic acid, the omega-3 essential fatty acid. But conditions are rarely optimal. Lack of many nutrients can inhibit the desaturating enzymes (D6D and D5D) that make this conversion, including deficiencies of protein, zinc, biotin, vitamin E, vitamin B6 and vitamin B12. Consumption of sugar, trans fatty acids and overconsumption of commercial vegetable oils, high in omega-6 fatty acids, also inhibits these enzymes. There is some evidence that an excess of oleic acid (found chiefly in olive oil and nuts) may inhibit prostaglandin production. On the other hand, saturated fats, especially lauric acid found in coconut oil, improve the body's production of DHA and EPA." Just love it when this happens -- I still had the windows open and everything!

Hi. I did a Google of UK IVIG and NHS and came up with these links: 1. http://www.ivig.nhs.uk/ "This website provides a resource to healthcare providers to understand the Demand Management Programme for Immunoglobulin and access guidance and materials to ensure its effective implementation. "The shortage of immunoglobulin prompted the DH to develop a Demand Management Programme, with the objective of ensuring that supply is maintained, even in times of acute shortage, for the patients considered to be the highest priority because of a risk to life without treatment." 2. http://www.ivig.nhs.uk/clinicinfo.html Clinical Guidelines for Immunoglobulin Use (2nd Edition, May 2008) The clinical guidelines provide guidance on appropriate use of immunoglobulin and a framework for the promotion of evidence-based clinical practice. A poster summarising the recommendations for appropriate immunoglobulin is provided. A summary of the guidelines was published in the BMJ and can be accessed here through the BMJ website. 3. http://www.ivig.nhs.uk/documents/Clinical%...ITION%20(3).pdf "PANDAS Only one case–control study shows benefit from plasma exchange and IVIg (single dose) in PANDAS [165]. There are no established treatments for this condition." Good ol' NHS! Hope this helps! Allison

Thank you Dr. T. This is very good. I wonder about your #4 in that Im not sure we see rapid improvement. Can you qualify that? I like the Pandax subgroup as I do think it fits my dd16. A

Yes, I agree that much can be answered by a better understanding of CamK II. I don't really understand it at all, other than I've been told it's a clear indicator that my dd16 has Pandas (her Cunningham level was 200 in November.) What is it? A protein? An antibody? What is it's function and role in our bodies? Why does a high level indicated inflamation in basal ganglia? Maybe Dr. T can answer? Or Buster? Or any of your really smart folk out there who have been studying this far longer than I have. A

I just plowed through this very long, yet fascinating, report. Two questions: 1. Where are we in the 5-7 year cycle? 2. What are the top 3 recommended treatments? Thanks, Dr. T for this posting. It really is helpful in understanding what's going on in our dd16. A

This all makes sense. My dd16 has had terrible and mysterious tummy aches for years. Now we see it as a Pandas symptom (actually she's more PITAND.) I just had a big "Aha" and "connect the dots" moment last week when I read about how we have brain cells in our stomachs. I have known for years about our enteric nervous system that goes from mouth to anus. Never thought that the same antibodies attacking neurons in brain could also attack neurons in GI tract. Would be interesting to see map corresponding nerves in stomach with same nerves in brain. Bet you dollars to donuts that it's smae as hippocampus or basal ganglia. A

This is really interesting. I have long thought that it would be in Pharma's interest to "prove" IVIG as standard of care for PANDAS/PITAND so that the insurance companies will have no excuses and will have to pay for it. Basically, it's a "growth market" right now, and the insurance issue is a big barrier to entry. I even called Baxter recently, especially as I saw posts on this board that they have a financial support service for anyone wanting to self-pay for IVIGs. I called our local hospital and found out the brands they use for IVIG, one was Baxter's and one was Gamunex. I left a message and although Baxter called me back, I didn't follow through with them. Kinda busy with pandas stuff... But I did have success with Gamunex. They've offered to help talk with my insurance company, and also referred me to an insurance advocacy company called Paraplex. I haven't had time to follow up on these leads either. Anyone hear of them? But they never said they would fund research -- that's what's really needed, so I'm really excited about this news from Baxter. Please keep us updated on how it goes, and don't be afraid to ask for help submitting the protocol, application, or forms or whatever you need. I'm sure you'll find a lot of us willing to participate in any study too! Sign me up for sure. Allison

We are on the West Coast. It's set to record. Do they mention any bacterial or viral connection to that girl's condition?

Welcome fifide! We are US/UK duals living now in US for 10 years. We have seriously considered our options for our dd16 if we were to move back to UK, or even send her to live with her gma. Then I found the UK NHS policy on IVIG that does not allow use for Pandas. In fact, I was surprised to learn that IVIG is being effectively rationed due to shortages. All product must come from US and Europe, as mad cows prevents them from harvesting local blood. Have you heard about this? We are also wondering about cross-care issues with Canada. Can you go to Canada and get care under their system? They allow IVIG for Pandas. Allison

Hi, Britmom, Your Ped is right. Normally the two go together, with the DHEA balancing out the Prednisone. In our case we didn't find out about it until recently, and will try it anyhow, even after last month's Prednisone course. Btw -- are you Britmom because you're a Brit? Or your kid is called Brit? Just curious.

Thanks for looking that up for us. I know that the potential for harm exists, and in fact our local natural foodstore (PCC for those of you in Seattle area) won't carry it because it's risky without doctor supervision. I've heard that the growth factor in it can also promote tumor growth as well. However, I'm confident that with our doctor (regular MD pediatrician) checking blood levels first and then dosing to standard of care, we'll be in safe hands. Certainly, I'm willing to risk mild side effects compared to Prednisone whammies. Anyone else out there hear/know anything more? I'll post as I continue my research. This is all new to me, too. Allison

Hi, Our pediatrician has ordered blood tests for my DD16 to see what her DHEA levels are. We're going to supplement to help her body fight the inflammation on its own. She had such great improvement with Prednisone, but the side effects were really horrific, one of which is hormonal disruption. As DHEA is a hormone, it's like it's needed to re-balance things, and also should act like a steroid to reduce inflammation in general. Has anyone out there had success with DHEA? Thanks, Allison

Hey WOM (Worn Out Mo) Such a difficult situation for you! Especially when they beg for help and an end to the suffering. My DD16 has been going through a rapid downturn since the Prednisone wore off three weeks ago. She has a 504 Plan with generous accommodations, however I think an IEP would give her more help to succeed in her classes. Im going tomorrow to ask for one at school, but they've been very reluctant to go down that road up till now. She's capable, when well, of As and Bs, but now she can't even get to class let alone do homework. It's like a serious learning disability. We had a tutor from the district, for two whole hours per week, and only when the Dr certified she had to be home for at least 4 weeks. The first month she was too sick to even see the tutor, and by the time she did, the steroids kicked in and she went back to school. All her first Semester classes were "No Credits," so she couldn't even apply the little work she did do to the classes. The new semester started off with a strong steroid burst, and she was like a normal kid again. Didn't last though, and basically she has been home sick for more than two weeks. Goodbye graduation. Hello Super Senior! She at least wants to "walk" across the stage with her class and participate in the graduation festivities. I don't know if they will allow it, but I think they should. She's lost so much from this disease; I'd like her to at least have a ceremonial goodbye along with the kids she's been in school with since second grade. If she wasn't sick, shed be graduating and going off to college like all her friends. Next year, if she's well enough, will be Running Start, on-line classes and other independent study options. Sometimes I want to pull her out alltogether, because right now the last thing we need to be worrying about is her education. Time enough for History and English later. Right now it's all about health and wellness. Guess I got off topic. I just feel the pain and needed to vent some as well. But I would be interested in knowing more aboutIEPs and how to get one. Thanks !

Thanks for the relplies. It actually does rassure me alot to hear what you both said. Chances are she won't do anything untoward. I just think her judgement is impaired right now. I'll follow up on Sunday with any info I can discern. A

Thanks, Kelly, this does help a lot! Put the refresheverything link on the Fan Page? I'll post to my Facebook page and tell my Friends to vote! Would be nice to see Dr. C's work get funded! Allison

Hi, thought I'd ask a "teen" question since we're all parents of teenagers. My DD16 is going to the Big Dance Saturday night. She's been looking forward to it for weeks, and we've got the dress, the shoes, etc. She's going with a boy who used to be her boyfriend, but they're just friends now. They go out in large packs of kids and have a really fun time. My question is, do any of you parents know what would happen to a PANDAS kid if alcohol were consumed? She's a good kid, and her friends are pretty straight-and-narrow, but I know that alcohol and pot are out there, and she tells me about her friends who drink or smoke. I worry that she's in this kid-like state of regression and will be taken advantage of or pressured into doing something she wouldn't normally do. It's bad enough worrying about a healthy teenager, but the added edge of PANDAS and all that goes with it -- it's a wonder I get any sleep at all!

Hi, I became a Fan, but I'm a little confused. To be honest, I don't really "get" Facebook very much! What does Pepsi Refresh have to do with it? What is the competition? You have to explain things really slowly for me -- Thanks, Allison

Hi, just thought I'd echo some of Cheri's observations in that we try to keep it "clean" as far as our diet is concerned, especially gluten. We have a long way to go, but the organic, fresh ingredients approach to every day is my focus right now. It's so easy to go a whole day eating nothing fresh. I think that fruits and veggies in their original, natural state, are a good way to fill up, get fiber, vitamins and minerals. Lots of carbs there, too. Also, when raw, they are loaded with enzymes. Entire books have been written about the benefits of enzymes, and I believe we'll be finding out more about these here, too. Cheri, your list of treatments and dietary approach have help me a great deal. Thanks so much for making yourself so available. Allison p.s. -- organic corn by definition can't be GMO (genetically modified), so if you're not allergic, then organic corn might be a good choice. King corn looks great, although I've only seen the trailers.

Kari, I'm amazed at your finding. Stunned actually. My dd16 also has the scalp picking symptom, which is really annoying, and she does it to point of bleeding. It's one of her Pandas/OCD symptoms. When she did her steroid month, all her symptoms calmed down to near zero, even that one. During this month of heaven, she started taking her supplements, including Selenium, every day. Now that the effects of Prednisone have worn off, all the symptoms are coming back, but she's still taking the Selenium and other supplements, and I really have noticed that of all the symptoms, the one returning in the mildest form is the head-picking. It's back, but not nearly as bad as before, by a long shot. So, when you posted that quote, it all clicked. Thank you so much!!! Allison

Hi, Just a note that might be of interest. Our pediatrician (good Pandas doc, very tuned in to it all) sponsored a talk on general health and nutrition by a great Naturopath last week, and one thing he said stuck with me and reminds me of your kids's nail biting/sucking issues. He was talking about the importance of minerals in our diets, and how when animals are mineral defficient, they "crib." That is to say, they bite everything around them, even other animals. In this case it was cows he was talking about, and then he talked about pica in pregnant women, which is a mineral deficiency. I know that the symptoms you're talking about are from the Pandas, etc. But it might be worth trying to up the minerals, especially selenium. Let us know if it works! Shouldn't take long to see. Good luck! Allison