NancyD

A great place to go in Texas is Thoughtful House in Austin. Their doctors are excellent and they understand and treat PANDAS. They are DAN doctors. See http://www.thoughtfulhouse.org/ Nancy

A great place to go in Texas is Thoughtful House in Austin. Their doctors are excellent and they understand and treat PANDAS. They are DAN doctors. See http://www.thoughtfulhouse.org/ Nancy

Hi Elizabeth, My daughter's primary doctor is a DAN doctor but the doctor administering the IVIG is a pediatric rheumatologist. Both doctors felt we should do IVIG before considering PEX. We also saw an immunologist who concurred. PEX is something I am considering for the future. There is no research on the efficacy of IVIG v. PEX on older kids so we are traveling on unchartered waters. Even anecdotally there is limited amount of info on this. If you are asking if IVIG is key to the success of treating the PANDAS, then categorically YES. The key to treating my daughter's ASD very early on was round the clock DIR/Floortime and DAN protocol. Although she is no longer on a highly restricted diet, she was gluten, casein, soy, dye, and additive free from the time she was 3 until she was about 9. Her diet today is still dye and additive free and she eats mostly organic food and very limited sugar/carbs. House and yard is also chemical free. We have done chelation and glutathione IVs for years. Monthly glutathione IVs over a three-year period cleared up her colitis. She has also had years of other therapies: Speech/language, OT, social skills group. hippotherapy, etc. Indeed, it has been a V-E-R-Y L-O-N-G journey. It ages you very quickly! My best weapons are a good sense of humor, a LOT of patience, and a strong drive to advocate for my daughter. Some days are better than others!! Nancy

Hi Melanie, My daughter has her IVIG infusion every 28 days -- we started last August. She had her first overnight onset at age 3 1/2 but it was not diagnosed until she was 7. She has been taking twice daily penicillin since age 7 and that has helped but it is just a bandaid treatment for her. It took me years to finally get insurance to cover IVIG and now with Harvard Pilgrim HealthCare they do cover IVIG for PANDAS. The infusions have completely eliminated her violent rages and severe mood dysregulation, 90-95% of her tics, and she is sleeping through the night all by herself for the first time since she was 3 1/2. Although it has not helped her OCD/anxiety, she is much more focussed and has gone from Cs and Ds at school (not to mention talk of possible residential placement), to making straight As and being pushed ahead a grade in history. I wish you every success with the IVIG, Melanie. I hope it is the answer for your son!! Nancy Hi Nancy Thanks for responding what do you mean for a year? How many times has she done it? Im still awaiting the call from the MD about insurance coverage. Melanie

For those parents who are worried about sending their kids back to school and risk being exposed to more strep, there are other measures you can take to try and prevent it (in addition to the prophylactic antibiotics). Please check out my post at http://www.latitudes.org/forums/index.php?...art=#entry36129 re Xylitol nasal spray, Biotene, and Papaya enyzmes. I plan to build this into my daughter's regime. I spoke with our DAN doctor and he is fine with it. In addition, I give my daughter lots of Transfer Factor and Querciplex on a daily basis and I find this REALLY helps. And I have her use Ocean Sinus Rinse for Irregation and Moisture. Just a few thoughts... Nancy

Melanie, my daughter is 13 1/2 and has been doing IVIG for a year. Happy to help if I can. Nancy

Vickie, I don't blame you for not wanting to transfer your records until you know for sure. I suggest doing a 15 minute in person consult before determining if it is a good fit and if you want to transfer your records. The DAN doctors do understand PANDAS and most will treat with prophylactic antibiotics and IVIG if necessary. I travel 3 1/2 hours each way to our DAN doctor in NY state and it is well worth it. In the beginning we went monthly, but now we only see him every 3 or 4 months. He responds to emails and does telephone consults. Makes it much easier during the winter months. Have you checked out the DAN Doctors in OH or neighboring states? The referrals I get from my pediatric contacts in OH will likely NOT be DAN doctors but if you are interested in seeing a DAN doctor I can check around. I do know there is a terrific geneticist in OH at the Cleveland Clinic-- Marvin Natowicz, MD, PhD. His specialty is autism and metabolic disorders. Perhaps if you call his office his staff might be able to recommend someone. Soon as I hear back anything I will post whatever referrals I get. Nancy

Hi Michele, I just emailed my pediatric contacts in OH to see who they can recommend -- both pediatricians and specialists who understand PANDAS and who know how to treat it. I will report back any referrals I get. I can't promise anything but maybe we'll find someone for you. Nancy

Hey Vickie, I conducted a pediatric training in OH last year and have some contacts there. If you'd like, I can email a few specialists and also the Exec Dir for the OH Chapter of the AAP. Happy to try and find a pediatrician for you who believes in PANDAS. Just let me know. I do think a DAN doctor will be your best bet though. Nancy

Yes, Harvard Pilgrim Health covers IVIG for PANDAS. It is the only insurance company in MA I could find that would cover it. Nancy

dcmom, it was Augmentum and psychiatric meds. That is why I wanted to get to the producer...so it is an accurate picture of PANDAS and how our children are affected, as well as the treatment options. I have seen many of Nancy Snyderman's reports on ASD so I worry about how she will do this story.

Like your thinking, Vickie! I'm on it. I emailed Dr. Snyderman's producer earlier this morning and offered to get them the latest research, families for stories, suggested doctors to interview, and an overview of the struggles that many families face. I have worked with Today before like this (I worked with the producer who did the 11-part series on ASD a few years ago). In fact, that producer is now at CBS working for Katie Couric and I was thinking of emailing her too. Nancy

I just received an email from Beth Maloney, author of Saving Sammy. As a result of her book, Dr. Nancy Synderman, medical editor for Today Show, is going to do a segment on PANDAS. She is going to be interviewed as part of the segment. It's happening on Thursday, September 24th. Way to go, Beth! Also, she says: "The sale date for the book was pushed back to September 22nd (from September 8th) to coincide with The Today Show appearance. And Random House lined up a co-promotion with Barnes & Noble to feature the book on display. The first trade review came in (from Booklist) a few days ago, and the closing line is: 'This stirring account of a mother's determination and a boy's astonishing bravery makes you want to stand up and cheer.'" Congratulations to Beth! Nancy

Hi Michael, I'm sorry you are feeling so frustrated by this new possible complication. Unfortunately, this is part of the process. For some of us, this can take years. Dr. Bock is thorough and he is methodical in his approach. It may take a little time, but rest assured, he will get to the bottom of it. He does treat a lot of Lyme patients and if your son's test came back borderline positive, then that is certainly an avenue to explore first. I'm sure, along the way, there will be other avenues to explore, as there is nothing simple about PANDAS. While he may not favor PEX as a first, second, or even third course of treatment, I feel certain that when it is time for us to explore options beyond IVIG, Dr. Bock will be supportive of PEX. But I agree that you should consider IVIG and other options before considering PEX. Regarding insurance, can you get and pay for another insurance plan for your child that will cover IVIG (even if it's for a few months)? That would certainly be cheaper than having to pay 100% for the infusions. I know a parent that did this. Just a thought. Nancy

Michele, I know this clinical trial looks very promising but I wanted to let you know about our experience with Riluzole. Although we opted not to join the NIMH study, we followed their protocol last year for 3 months under the supervision of my daughter's doctors. We increased the dosage as recommended but after 3 months we saw no results. So we decided to take my daughter off the Riluzole very, very slowly. The withdrawal resulted in an overnight onset of very severe motor and vocal tics. It was just devastating and it did not go away until after the third IVIG infusion. I reported this to NIMH and to the manufacturer of Riluzole. I was told this was the first time anyone has reported anything like this. My big question to NIMH would be -- how many children in the study are diagnosed with PANDAS? I could be wrong, but I don't think these children have PANDAS. Nancy

I'd love to talk with her, Vickie. Thanks! Nancy

Hi Michael, Yes, that is my daughter Ken is talking about. He profiled her in his book and documentary (she's the one with PANDAS and ASD though he gave her a pseudonym). She was doing well when the book was written and then she went downhill. With regards to insurance, can you switch to another plan that covers IVIG? In which state do you live? Be sure to check out the thread called "If your ped is on board with IVIG, how do you logistically make it hap". In one of the later posts EAMom suggests using "Unspecified Immune deficiency" or "autoimmune encephalitis". You are welcome to contact me outside the forum. Nancy

As an add-on to my last post, I did a little poking after reading about Xylitol in the article at http://www.adefa.com.br/portal/modules/art...print.php?id=67. It also talks about vitamin C. biotene, and papaya enyzmes as a way to treat strep in the sinuses/gut. That sinus infections can start from the gut is well-known (wish I knew this before!). Xylitol reportedly has antibiotic activity. Vitamin C of course helps with infection. Biotene claims to contain enzymes that break down debris in the mouth so presumably bacteria can't breed there. Papaya enyzmes break down protein (proteolytic enzymes), which are often suggested for inflammation situations. So anything that improves the micro-ecology of the gut should help reduce infection elsewhere. Nancy

Keep in mind...strep may be hiding in many other places in the body other than the tonsils. Nancy

Here's a link to the entire article: http://www.sarnet.org/doc/PANDAS_Mol_Psychiatry_2009.pdf Nancy

Excellent idea, dcmom. I think I will email Ian Lipkin (Columbia) about it first. Nancy

Hi Michael, Welcome to the forum! Both motor tics and vocalizations are common to PANDAS. Vocalizations come in all types and sizes. For some children, they may be loud, while for other children, they may be much more subtle. A vocalization may be a spontaneous, involuntary grunt, squeal, scream, bark, or utterance of an inappropriate or offensive word or phrase. Last year my daughter had an overnight onset of vocalizations after we took her off a new medication that we were trying for her OCD (she had her first PANDAS episode at the age of 3 though she was not diagnosed until age 7). She was grunting, squealing, and shouting all kinds of horrible and bizarre phrases. These were phrases I could never imagine my 12-year-old knew, much less would repeat in public. Needless to say, she was very embarassed and wanted to crawl under a rock. Prior to this she was very social and loved to spend time with friends. She isolated herself and became very depressed. We also see Dr. Bock (Ken, not Steven) and he had been pushing IVIG for a few years, but I could not get insurance to cover it until last August. Within 3 months (after the third infusion) 100% of the vocalizations were gone and 90-95% of the motor tics were gone. My daughter began sleeping through the night for the first time, her moods were regulated, and the rages were gone completely. She is off Risperdal for the first time in 10 years and she is so much happier. It has not helped with the OCD/anxiety, but for us, it has been an amazing transformation. Ken Bock has never suggested steroid bursts to us, but he is very open minded. We have tried many different treatments over the years and many different antibiotics -- some work better than others (PenVK worked best for us without making the yeast much worse) and others made the symptoms a lot worse. Every child is different so the treatment must be individually tailored. But Ken has always pushed for IVIG and he is supportive of PEX. Ken considered my daughter's PANDAS to be one of the most complex cases he has seen. Good luck with your appointment and keep us posted! Nancy

I recommend the following book: What Your Doctor May Not Tell You About Children's Vaccinations, by Stephanie Cave, MD.

From what I understand, strep can hide just about anywhere in the body. Here's a link to an interesting article: http://www.adefa.com.br/portal/modules/art...print.php?id=67 I don't know who authored the article -- it looks like it's linked to an autism organization in Brazil. I always thought that perhaps my daughter's strep was in her sinuses. She has never had a strep throat infection in her life but she does get sinus infections. This article says "Streptococcal infection in the gut can serve as a reservoir to reinfect the sinuses." My daughter has had a lot of gut issues over the years -- in fact, she had chronic colitis. This article goes on to say, "Xylitol nasal spray will help to eliminate nasal strep, reduce ear infections and has been reported to help with leaky gut, most likely by deceasing the flow of streptococci from the sinuses into the gut." If anyone has any insight to this, please comment. I'm going to email our ped. gastro, Tim Buie, and see what he says. Very interesting... Thanks for bringing this up, dcmom. Nancy

This is EXCELLENT, Vickie. Thank you! As soon as I get my daughter back to school in a couple of weeks I will start adding to this. Nancy