NancyD

Kayanne, Can you tell me in a brief paragraph about your child? Suzan too. Please include age of child. Thanks. Nancy

I agree. I think this would make a great story. Mom MD, how old is your child? Perhaps we can talk in a couple of weeks after my daughter goes back to school? Nancy

You are correct about that, Vickie. Best to be pre-emptive and suggest to the producers that they interview Sue Swedo and a short list of other physicians who we know believe in PANDAS. The producers are always happy when you do some of the leg work for them. Of course, we would make sure in advance that the physicians are willing to do the interview. I know someone who works for Sue and I can ask her. Nancy

Ahh, you are correct, Kim. What a relief. I thought I heard someone on the ACN forum refer to NAC as a glutamate blocker. Thanks for checking that out! Nancy

One thing really worries me when I hear "glutamate blocker" (specific to NAC)... Last year we tried Riluzole, a glutamate blocker. NIH is having some success with it for children with OCD (though not necessarily caused by PANDAS). It did not help my daughter at all and, after 3 months of trying it, I tried taking her off it very slowly and it caused an overnight onset of full-blown TS. This was the first time she ever had vocalizations and they were just horrible! The motor tics were also at its worse as a result of the Riluzole. I don't know if it had to do with it being a glutamate blocker or the fact that stopping the Riluzole brought out the tics like a withdrawal reaction. Has anyone had a similar reaction to a glutamate blocker? Nancy

Thanks Vickie -- I'll check this out later tonight. Have to take my daughter shopping for school clothes in a few minutes. I doubt ABC would consider running another similar segment so soon after the other, but you never know. Was Dr. Timothy Johnson involved in this piece? If so, I can approach his staff (I have worked with them on other pieces and they are located in MA near me). I'm sure we could get Drs. K, Cunningham, Bock, or others to participate. Let me think about a good angle... Nancy

What we can do is approach a couple of producers to see if they would be interested in doing a piece on PANDAS. If they are interested, I'm sure they would want to show a couple of families with success stories and a couple of families still strugging (and have dramatic stories to tell). The kids should range in age. Anyone else interested in particpating? Nancy

I first saw this post last month and thought nothing of it since I did not recall my daughter ever complaining about knee pain. And then yesrterday, while we were at the pediatrician's for her well visit she told her doctor that her knee had been bothering her on and off for months. And she never told me (well actually, now that I think of it, she might have mentioned it once but I never connected it to any of her medical problems). I will mention this to her rheumatologist and DAN doctor. Nancy

I have contacts for each of the major networks and would be happy to work with anyone who wants to get the word out. We would need an angle different from the one portrayed on ABC (I did not get to see this segment so if anyone has a link, please post) and some families to volunteer their stories. Nancy

I am so sorry to hear how rough this was! I can remember when my daughter was 3 and we were putting her through one invasive test after another. It just breaks your heart! I can tell you that she has little recollection of the awful times at the hospital from the very early years. I always worried about this. Have you ordered the FREE PLAY IVIG KIT for children? This might be very helpful for her to undertstand what is going on. Also, you may want to consider buying the book REPLAYS by Karen Levine and Naomi Chedd, which teaches you how to use play to address specific issues in different circumstances. Karen is a developmental psychologist on my daughter's team and we have used her methodology of Replays to desensitize my daughter to the many medical treatments she has received and it has really helped. For years it took 4 people to hold her down just while she was getting her blood drawn. I hated hospitals almost as much as she did. This is really GREAT news about the results you are seeing from the IVIG -- your daughter's comments to you, the episode at the playground, and the 6am potty use. We live for these moments! As you say, try and live in the moment and not get caught up in "what ifs". Please keep us posted. We will be thinking of you and the wonderful moments you are finally getting to enjoy! Nancy

Hi Michele, We have not done steroids. My daughter was diagnosed with mild-moderate PDD-NOS (not Asperger), though technically she is not considered to be on the autism spectrum anymore. Her primary issues are PANDAS-related, however she still misses some of the subtle social cues and she has auditory processing deficits. I am happy to talk with you any time. Just email me through the forum and we can schedule a time. Nancy

Hi Kim, My daughter is taking 1200 mg NAC twice daily and has been taking it for about 2 months. I have seen no change since beginning the supplements. Based on the study you mention below, perhaps she hasn't been taking the supplements long enough for us to see a difference. I should also add that she gets NAC combined with her glutathione IV when we see her DAN doctor. That used to be monthly for a few years and now it is only once every 3 or 4 months. Perhaps that is why the OCD is worse (?). Hmmm...food for thought. Thanks for mentioning this, Kim! Nancy and I saw your recent remark about NAC not appearing to work for your daughters OCD. I'm wondering if you could say how much you have been using for how long?

It would be a very different story from Horse Boy (by the way, that's a good book). Sarah is used to having her face on TV and in magazines. She's been profiled twice on Today Show, in a documentary, and on several other shows, so she's used to it. She would like to help other children who have disabilities.

Thanks Michele! It could be fun.

Love it!! The joy and therapeutic value that her horse has brought her over the past year has been unbelievable. And it has given me some respite (something I have not had for years). Here are a couple of brief poems she wrote last month: Horses Helping to build relationships Overcoming fears Respect for this gentle giant Scoring a perfect 10 overall in the Dressage ring Exploding into the show jumping ring and racing towards the fences Speeding up towards each and every cross country jump with boldness and determination Horse Eye A magical gleam Stares at you with awe A look of the future A sign of bond and friendship Images through the magical eye surround you A relationship forms Through the gleaming eye An unexplicable feeling Through the wonderous horse eye Yes, our children are so incredibly strong and resilient. I find it amazing after all they have been through. Nancy

Just going back to an old comment Vickie made, I would be interested in starting a thread that discusses the various environmental toxins that may be affecting our kids, if anyone is interested. Nancy

EAMom, Part of me is still drawn to that. It would certainly be easier to write about my daughter since I would not have to research the topic! I just now asked her and she said "YES, as long as I can write about Emmy [her horse]." Horses are her passion and obsession! I did read a proof of Saving Sammy and wrote a blurb for the book. It's a very fast read. I, too, wished she had discussed IVIG, PEX, and some of the other treatments. I have not heard about Against Medical Advice , but after checking it out on Amazon, I'm going to order it. Love all the suggestions...thank you! Nancy

Ellen, The tricky part -- as I touched on in my last post to Vickie -- is the lack of research. However, I can get around it if I tell the story through several familes (who have varying diagnoses) and discuss how they treated their children. I do like this idea. I would also love to do a companion documentary at the same time. That is another of my passions! Have you read Healing the New Childhood Epidemics by Kenneth Bock, MD? It's very good! He presents a few detailed case studies (my daughter is one -- we have pseudonyms) and he goes into detail about testing and treatments. I highly recommend it. Thank you for your thoughts and support! Nancy

Hi Vickie, There are a few books re toxins and how it relates to mental health, immune system, etc. though not the kind of book I would like to do. I do try to stick with material that has scientific research behind it. Little easier to get around if it's about personal experiences. I like the idea of writing about family experiences (both personal and medical) though I would love to focus on the "so-called" MH and immune disorders that may be related to toxins. Thank you for your thoughts, Vickie! Nancy

Hi Worried Dad, I'm happy to talk with you any time you'd like. Hang in there with the IVIG -- and give it a little longer. My daughter is 13 and started her infusions last fall. We did not see any results until ~ the third infusion and what we saw was amazing. The rages and emotional dysregulation were gone, the tics about 90% gone, and she began sleeping through the night for the first time all by herself. We were even able to take her off Risperdal for the first time in 10 years. I cannot say the infusions have helped her OCD, though for her the only thing she is compulsive about is talking (non-stop). She does get obsessive thoughts in her head and it's hard for her not to think (or talk) about them. We did have to stop the infusions after the third one due to an insurance problem and we saw about 40% of the symptoms come back slowly over a 3-month period. This was a bit disheartening, though I was warned about it. We started back up in February and she is back to where she was when she was at her best. She continues with the IVIG every 28 days and she has one or two minor motor tics but none of the vocalizations ever returned. She is holding very steady emotionally. I don't know how long she will have to continue the infusions but if it's for the rest of her life it will be worth it compared to where we were. At some point soon I may bring up plasmapheresis to her doctors. I would really like to find something that will help with the OCD. NAC is not helping. I do find that diet plays a big role though. For her, dyes and additives made the tics much worse. And, of course, stress plays a big role. I try to minimize the amount of stress in her life, but at 13 (as you know), that is really difficult! We did see a neuroendocrinologist last year to test her hormonal levels so we could rule that out. Everything came back normal. However, I was told that many kids (particularly boys with ASD) have very high levels, which can really exacerbate their symptoms. May be something for you to check out. Keep us posted on how you're doing. Nancy

Thanks EAMom! I have included bits and pieces of my daughter's story in both books (my first book was called "Could It Be Autism? A Parent's Guide to the First Signs and Next Steps"). Quite frankly, I don't know if I want to write a book just about my daughter. It's been a painful journey -- I don't know if I am ready to relive it all just yet. Besides, our journey continues. She is still on the road to recovery from the PANDAS and we are, by no means, in the final stretch. Perhaps after the PANDAS is a distant memory... We have talked about writing a book together. She is a good writer and loves to write poetry. Perhaps I will wait until she is ready to do it with me. Having said that, I am ready to tackle another book. I was toying with the idea of writing a book about PANDAS or one that shows how infections, toxins, and other environmental influences can trigger OCD, anxiety disorders, tourette's syndrome, and ADHD in a child and how to go about finding the underlying causes and effective biomedical treatments...but my agent is not quite sold that there is a big enough market for it. Publishers are cutting back on the books they are buying so it should be a book that has not been done before and one that will sell well. I am open to ideas if anyone has any... Nancy

Hi Michele, Most parents do not begin to see early signs of ASD until the child is 18 months, so without knowing more about your son it's difficult to say if he was already headed for the autism spectrum prior to his first strep infection at 13 months. You can view the Hallmark Developmental Milestones for 4-36 months at http://www.firstsigns.org/healthydev/milestones.htm to determine if he was meeting his important early milestones. It is certainly possible that the strep infections compromised his immune system and tipped him over the edge and onto the autism spectrum. There are some children who do not progress in development and there are others who clearly regress (lose skills they previously acquired). The problem with coexisting conditions is that they can block your road toward finding ways to reduce the symptoms because those symptoms can be due to one, two, or more of the co-existing conditions. Many disorders can manifest in so many different ways (gastrointestinal overlapping with immune dysfunction overlapping with wild mood swings overlapping with allergies overlapping with social, emotional, and communication problems) and interact in so many complex ways that diagnosis can be quite difficult for practitioners with limited experience. In my book I discuss how to peel apart the layers (issues) one at a time. In addition to biological factors you have to look at the child's physical and emotional environment. So if your son has regulatory/behavioral issues, you need to determine the underlying cause before you can choose an appropriate treatment. Are the regulatory/behavioral issues tied to an imbalanced sensory system, food sensitivity/allergies, gastrointestinal problems, or are they due to PANDAS? Have you treated the gastrointestinal issues? Often yeast overgrowth can cause these problems. Have you investigated food intolerances or environmental allergies? Certain foods, like gluten, dairy, soy, dyes, and addititives can cause behavioral problems. Is he on a restricted diet? Have you seen a pediatric gastroenterologist who specializes in ASD or a DAN doctor? If your son is on the autism spectrum then chances are he has sensory issues and requires sensory integration therapy. What is happening in his environment when he becomes dysregulated? Have you looked for any antecedents? Is he overreative to specific sounds, sights, taste, audio, smells? PANDAS can also be the culprit. It can cause mood dysregulation, tantrums, and rages. How are you treating the PANDAS? If he's on antibiotics he may have elevated yeast levels. If this is the case, are you treating the yeast? It took me years to get to the bottom of my daughter's mood dysregulation and violent rages. She was misdiagnosed with bipolar and ADHD at the age of 6 (this is on top of the ASD and severe colitis). We tried every psychiatric med available and most made her worse. Only Risperdal helped up to a point. As I peeled away the layers one at a time (treating the ASD, sensory issues, gastro issues, yeast issues, etc.), I discovered her regulatory/behavioral issues were 100% due to the PANDAS. My book will help you begin to peel apart the layers and help you put together a good team and get to know the different treatments. If you read either of my two books you will know that I am a big proponent of developmental-based therapies, like DIR/Floortime. I am not a big fan of ABA. But it does work for many children. I am very much in favor of integrating different therapies based on prioritized goals. I have a chapter devoted to this. I hope this help, Michele. If you'd like to contact me outside the forum you are welcome to. Nancy

Hi Michele, Try this link: http://www.amazon.com/First-Year-Disorders...2597&sr=1-1 If that doesn't work, just search for the book on Amazon or B&N. I have to run out to pick up my daughter at camp but I will try to get back to your questions tonight. All good questions. Nancy

Hi DC Mom, Re the cause of PANDAS...the antibodies produced by the body in response to the strep infection appear to be responsible for attacking both the immune system and the basal ganglia in the brain. The basal ganglia are biologically associated with movement and behavior. It can also cause a malfunction in the thought process. It is believed that the strep antibodies interact with the basal ganglia, causing tics, obsessive-compulsive disorder, and other behaviors. But other things can attack the basal ganglia, not just PANDAS -- deficiency in nutrients, toxins, viruses, and inflammation from other causes. The damage to the basal ganglia can create major problems for the entire brain. With regards to testing, that must be individualized according to your child's specific issues, not just the diagnosis. But typically, the DAN doctor will want to establish a baseline level of body chemistries so they can monitor the child's progress with treatment. This may include blood count, urinanalysis, liver function, kidney function, electrolytes, calcium and magnesium levels, blood sugar, lipds, and thyroid function, etc. Then there is testing to check minerals, urine organic acids, essential fatty acids, reduced glutathione, plasma sulfate, lipid peroxides, IgE and IgG, etc. etc. And there is immune panel testing (IgA, IgM, IgG levels), IgG subclass levels, vaccine titers, PANDAS profile, viral titers, etc. (K. Bock, Healing the New Chilfhood Epidemics, 2007). Yes, the immunological workup will include many of these blood, urine, and stool tests. Frankly, I would not even consider going to an immunologist who doesn't believe in PANDAS. I hope I am answering your questions. Nancy

Sorry, Vicki, that passage was rather dense. No matter what the diagnosis, the book will help parents in getting a second opinion, confirming and embracing the diagnosis, assembling a team of professionals, navigating long wait lists, understanding your child's individual profile, understanding underlying biomedical factors, finding the right biomedical specialist, accessing EI and school services, knowing your legal rights and your insurance plan, advocating for your child, identifying co-existing conditions, peeling away the layers, etc. Yes, I am saying that the outside triggers that are causing ASD and other disorders may be the same ones that are causing PANDAS. I don't necessarily think that PANDAS is an "undiscovered form of autism that remains latent until a strep infection". I'm just saying that outside environmental toxins, when combined with your unique set of genes, are causing specific immune, gastrointestinal, and/or metabolic problems that, in turn, are affecting the brain. Nancy