NancyD

I believe the triggers are external, not genetic. See quote from my book below. Nancy

For any parents of young children who plan to do IVIG I highly recommend getting this therapeutic play kit. It's really good. You can also order a wellness organizer from this link to keep all your medical records. Baxter did an excellent job. And it's free! I'm going to donate my kit to the infusion center at Children's Hospital Boston and suggest that they give this link to all parents of newly diagnosed children. Nancy

I defintely do not think it is a fluke or luck of the draw. There is a tremendous increase in the prevalence of ASD, AD/HD, allergies, asthma, autoimmune disorders, bipolar, OCD, tourette's, anxiety disorders, learning disabilities, and so many other disorders and diseases. I think bacterial and viral infections, toxins, and other environmental influences can trigger tics, obsessions, compulsions, anxiety, hyperactivity, developmental delays, and other medical problems. Regarding a comment earlier that all children with ASD should be given antibiotics to see if their ASD symptoms improve -- many parents feel strongly that antibiotics given at an early age due to ear infections or other bacterial infections compromised their child's immune system in the first place and may have triggered the ASD. In the case of my own daughter, I can see clearly in her early video footage around 3 months that she was on the autism spectrum. I believe that soy formula, which I later discovered she was highly allergic to, was a link to her compromised immune system. In addition, I had annual flu vaccines (no doubt they had mercury in them) right up until I got pregnant. Without question, she had autism in the first three years of life -- and although she had restricted interests and repetitive behaviors, they were not obsessive (there is a difference). She did have gastrointestinal problems and allergies, but she never had a tantrum, tic, obsession, sleep problem, anxiety, etc. until the age of 3 1/2. I can pinpoint down to the week (through her baby books, logs, and diary I kept) when she had an overnight onset of all these symptoms. And if I turn the pages back just one week prior, I see an entry showing she was diagnosed with a staph infection in her hand. I think there is a connection. My daughter has never had a strep throat infection in her life. Still, her strep antibodies were consistently in the 1000-3000 range from ages 7-12 (right up until we began IVIG) when we documented this. Whatever the answers are, I'm sure it is very complex. As with ASD, it may be caused by the interaction of • genetic factors • exposure to toxins commonly found in water, air, food, and vaccines; and • failures in the functioning of the immunological, gastrointestinal, and metabolic systems Nancy Vickie, Myself and another Mom are working on what we think may be that possible link. Hopefully, in the next couple of weeks we will know more information and be able to share where are thoughts are leading us. I think your gut is definitely right!! Sam

Hi T.Mom, Sue Swedo's role at NIMH has changed over the years. She is now chief of Pediatrics & Developmental Neuroscience Branch at NIMH, which includes autism spectrum disorders. There is much greater demand from the public and a lot more federal funding to study ASD. My hope is that they will begin researching some of the comorbid disorders associated with ASD, like PANDAS. A few years ago I was told by someone at NIMH that they would be studying a subset of children on the autism spectrum who have PANDAS, but then earlier this year I was told by someone else at NIMH that they had no plans to study PANDAS any further. I find this very distressing. We must raise awareness about PANDAS and push for federal funding for research and treatments, similar to the way we are doing for ASD. The current Interagency Autism Coordinating Committee (IACC) strategic plan for ASD research includes "detailed criteria for specific ASD sub-types in order to better describe the variations in symptoms and severity and study how these variations relate to underlying pathology, intervention strategies, and outcomes" and "ASD subpopulations and associated biobehavioral markers that provide early indication of ASD risk and opportunities for early intervention." Hopefully, some valuable studies will come out of this. To meet the diagnostic criteria for an autism spectrum disorder, you must have three core features: impairment in social interaction, impairment in verbal and nonverbal communication, and restricted and repetitive patterns of behavior or interests. The red flags in the second year of life are: Impairment in Social Interaction --Lack of appropriate eye gaze --Lack of warm, joyful expressions --Lack of sharing interest or enjoyment --Lack of response to name Impairment in Communication --Lack of showing gestures --Lack of coordination of nonverbal communication --Unusual prosody (little variation in pitch, odd intonation, irregular rhythm, unusual voice quality) Repetitive Behaviors & Restricted Interests --Repetitive movements with objects --Repetitive movements or posturing of body, arms, hands, or fingers (Wetherby, A., Woods, J., Allen, L., Cleary, J., Dickinson, H., & Lord, C., 2004) If a child shows two or more of these signs, parents should have their child evaluated for possible ASD. You may want to check out the ASD Video Glossary, an online video glossary that I developed in collaboration with Amy Wetherby, PhD at Florida State University and Autism Speaks to help parents and professionals learn more about the early signs and features of ASD. This glossary is linked from my organization's home page at www.firstsigns.org. There, you will see side-by-side video clips of children with typical behaviors in comparison with children who present red flags for ASD. To date, I have not seen a child diagnosed with PANDAS (who does not have ASD) who displays these signs. However, there is still so much we do not know about PANDAS (or ASD, for that matter). Not enough research has been done. Nancy

A large percentage of children on the autism spectrum have other co-morbid (or overlapping) conditions, such as seizures, allergies, gastrointestinal disorders, immune dysfunction, hyperactivity, obsessive behaviors, anxiety, depression, etc. Many children with ASD have dysfunctional immune and GI systems and are vulnerable to other diseases and disorders. There is a large sub-set of children with ASD who are also diagnosed with PANDAS though we do not know how many. No epidemiological studies have been conducted on children with PANDAS thus far. The so-called “comorbid disorders” are currently considered separately classed disorders that are not technically part of the autism spectrum according to the DSM but they do influence the severity of the ASD condition. Many professionals believe that these comorbid disorders are coincidental and not central to the disorder. I believe it is NOT coincidental. The model of autism as a genetic, brain-based disorder is maturing to encompass new discoveries about how body system dysfunctions contribute to brain dysfunction and together produce autism behaviors. (Martha R. Herbert, “Autism: A Brain Disorder, or a Disorder that Affects the Brain?” Clinical Neuropsychiatry 2, 6 (2005): 354–379; http://www.autismone.org/uploads/2006/Herb...20handout.pdf.) Regardless of whether or not all these various comorbid disorders are specifically part of autism per se, they clearly negatively affect the child and need to be reduced in order to treat ASD. For more info about this, please see the following books: The First Year: Autism Spectrum Disorders: An Essential Guide for the Newly Diagnosed Child (Da Capo Press/Perseus Books, 2009) by Nancy D. Wiseman Changing the Course of Autism: A Scientific Approach for Parents and Physicians (Boulder, CO: Sentient Publications, 2007) Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders (New York: Ballantine Books, 2007) by Kenneth Bock, MD and Cameron Stauth Full disclosure -- I am the author of the first book listed and I do mention PANDAS. Ken Bock addresses PANDAS in his book. Nancy

We got IVIG immediately at Children's Hospital Boston under Robert Fuhlbrigge, MD, pediatric rheumatologist. I, too, was originally told by other departments that Children's Hospital Boston "did not believe in PANDAS" so I was delighted to see that their immunology/rheumatology departments were fully supportive. You are welcome to contact me for more info if it helps. I know they are different Children's Hospitals. Nancy

Thank you, Sam. It's been a very long and painful journey, to say the least. The ASD has been a cakewalk compared to the PANDAS. She is receiving 0.8 gm/kg. I asked about increasing the dosage but because her IGG levels were on the high side neither our DAN doctor or rheumatologist wanted to up the dosage. My guess is that once we stop the infusions the symtoms will come back over time (maybe not completely but by ~50%). I emailed Dr. K last year and he said it was his experience that effectiveness of IVIG would be difficult to predict in light of her age. But, even if we have to continue with the infusions for the rest of her life, it will be worth it compared to what we had before. She is a completely different person now. I am very interested in exploring the possibility of PEX down the road. I would love to talk with any parents who have gone through it for their children. How is Shae doing today? I'm so sorry she has had such awful side effects. Keep us posted. Nancy

GREAT resource...the materials look good. Thanks for sharing, Sam! Nancy

Hi Sam, My daughter has one of the more severe cases of PANDAS our doctors have ever seen and they felt she would need at least a year of IVIG infusions. By the time she started IVIG at the age of 12 there was concern over whether the infusions would stick after puberty. Not to mention the fact that damage may have already been done to the basal ganglia after so many years without treatment. The first onset of symptoms came at the age of 3 but because she was already diagnosed with ASD her doctors at the time felt the symptoms were tied to ASD. Then, at the age of 6 she was misdiagnosed with bipolar and ADHD. None of the traditional meds helped. It was not until she was 7 and seeing a DAN doctor that she was diagnosed with PANDAS and immediately started treatment with antibiotics. That was when we realized all her non-ASD issues were tied to PANDAS and not bipolar, ADHD, TS, anxiety disorder, etc. Although 6 infusions of IVIG were recommended by our DAN doctor back then our insurance company would not cover it. I did not find an insurance company that would cover it until late last year when she was already 12 years of age and had reached puberty. After the third infusion we were forced to take a 3-month break until I could switch her insurance policy yet again to one that would cover IVIG for PANDAS without having to jump through hoops. Some of her symptoms returned about 60% so it was clear she had to restart the infusions. She has been pretty stable since the spring. She still has one minor tic and fairly moderate OCD, but she is very regulated now (no more violent rages) and sleeping through the night in her own bed. I did read somewhere on this forum that fish oil may aggravate tics so I am holding out her daily Omega 3 pills. Too soon to say if this is helping. We are also trying her on NAC for the OCD. Just the fact that we have come this far is amazing, but we may have to consider PEX down the road. Long answer to a short question... Nancy

The infusion center checks my daughter's blood pressure every 30 minutes (before, during, and after). I'm sure you are correct about high blood pressure. Also, our doctor says that if you push the IgG levels too high you can "make the blood viscous causing headaches and leads to cardiac strain." Nancy

We've been doing IVIG monthly since last August and have never heard this from any of our doctors. Nancy

The nurse at the infusion center gives my daughter 500mg motrin (though our DAN doctor says she can have up to 750 mg) and benedryl (not sure of the dosage but it's an adult dosage since she is 13) right before administering the IV. Then I follow up with 750 mg motrin 6 hours later at home (and again twice daily the next day). The benedryl is in case there is an allergic reaction, though I did find it helped her to sleep the night after the first infusion when she had a bad migraine. She tolerates the Gammagard very well though they always give her the benedryl just in case. The key to minimizing the headaches is to drink lots and lots of water. They will change brands (e.g., Gammagard to Gammunex) if patients have severe headaches or nausea. Nancy

You may want to consider motrin instead of tylenol because tylenol can lower the glutathione levels. For us, the secret to keeping the horrible headaches away is to do IVIG after eating a meal and drinking lots of water before, during, and after the infusion for a few days. The worst infusion was the first two consecutive days -- my daughter had a horrible migraine for 2-3 days. Since then, she does fine as long as she eats, drinks lots of water for a few days, and takes motrin and benadryl before starting and then I repeat it that night. I also give her motrin the next day. It's when she doesn't drink enough water that she gets a headache.

Dr. Kenneth Bock in Rhinebeck, NY (specializes in integrative medicine and also a DAN doctor) Dr. Robert Fuhlbrigge in Boston, MA (pediatric rheumatologist at Children's Hospital Boston) Dr. Raif Geha in Boston (pediatric immunologist at Children's Hospital Boston; specializes in immunodeficiency)

Some medications can cause nystagmus, an involuntary movement of the eyes. This happened to my daughter last year when we tried Riluzole, a medication commonly used for ALS patients (NIH is using it in clinical trials for OCD). After three months we decided it was not helping her at all and, as we started taking her off it very slowly, she developed nystagmus followed by full-blown tourettes (with both motor and vocal tics). The eye rolling was really bad and it gave her headaches. My daughter was a wreck and so was I. At the time I was concerned about possible TD because she was on Risperdal, but our doctors said no. This was clearly related to the Riluzole, which is a glutamate antagonist. It took months for it to go away, but not until after we started IVIG. I found that stress, dyes, additives, and (of course) elevated strep antibodies all made it much worse. Certainly the chlorine could aggravate it. I would consult with both your psychiatrist and neurologist (your DAN doctor too, if you use one). You might want to check his strep antibodies if you haven't already done so...and consider putting him back on the antibiotics. Nancy

We tried the Biofilm Protocol for about 3-4 months a year and a half ago under the supervision of our DAN doctor. While we did not have any adverse effects, we did not see anything positive either. So we discontinued it. The Biofilm Protocol consists of three stages: (1) breakdown and detachment of the Biofilm using specific enzymes; (2) EDTA, attacking of the microbes; and 3) clean-up phase. My daughter had to take Disodium EDTA, Lactoferrin I, Sugar Starch Digestion I, and Fiber Digestion I in the am when she woke up (on an empty stomach). Then she had to take her antibiotic, antifungal, and other supplements an hour later when she ate breakfast. At least 1 hour later, she had to take Natursyl, charcoal, and modified citrus pectin. This had to be repeated in the afternoon when she arrived home from school. Here's a link to an explanation of the protocol: http://drkurtwoeller.blogspot.com/2009/03/...unresolved.html Nancy I don't know what you mean by protocol. (I mean, I know what a protocol is, just didn't know there was one for eradicating strep biofilms) There was not a test to check for biofilms, but I theorized, due to my daughter's chronic strep that biofilm was a strong possibility. We used (and still are using) azithromycin for a prophyllactic Abx, because it has been shown to have the ability to penetrate the biofilm (studies done mostly in cystic fibrosis) to get at the microbes inside. I know that bacteria can cooperate with fungi and yeast in biofilms, besides Abx causing yeast infections, so we used antifungals(first diflucan and later switched to Nystatin which she is still on). This was just doing what made sense to her doc and I, not anybody's "protocol."

Hi EAMom, Very hard to say. In my daughter's case, ages 7-12 were the worst years with regards to violent rages. Tics and OCD were fairly manageable. But at age 12 the tics and OCD got progressively worse. Any improvement in the past 10 months was due 100% to IVIG infusions. I have every reason to believe that she would have continued to get worse if we had not treated her with IVIG. It makes me sick to think that we wasted so many years treating her for something else. Nancy

Deja2, I'm glad you liked Dr. Fuhlbrigge, though I am sorry you did not get the answer you were looking for. This must be so frustrating! I do agree with EAMom's last post -- it could still be PANDAS. Have you had your son's IGG levels checked? Are his levels low? My daughter has not complained in the past two weeks of any intrusive thoughts -- I am keeping my fingers crossed. She has been off the Risperdal for a few weeks now and, of late, she seems a bit more hyper at times, somewhat more chatty (if that is even possible!), and has more difficulty with self-regulation. But, this could be hormonal (she just got her period for the first time last week) and it could be due to the end of the school year, or a combination of the two. We see Dr. Bock in early July and I will talk with him about the possibility of switching from Pen VK to Augmentum. Nancy

EaMom, My daughter's dose is 0.8 gm/kg Gammagard every 28 days (about 2x the expected replacement dose for someone who is immune deficient). Just before the 3rd infusion we saw amazing results. She regressed a little two months ago but then came down with a cold. I gave her high doses of Transfer Factor and Quercitin and that helped. She was back to where she was within a week and now she is holding steady. I forgot to mention that the last set of titers were around 75 (down from 3000). We just tested her IgG levels and are waiting to see the results. Dr. Fuhlbrigge says "you don't want to push the IgG levels too high -- makes the blood viscous causing headaches and leads to cardiac strain." The anxiety/intrusive thoughts are fairly invasive. She tells me almost daily that it's driving her crazy. Technically, she has been off the autism spectrum several years. She no longer meets the diagnostic criteria, though she still has some residual issues -- she misses subtle social cues, has auditory processing deficits, and talks non-stop (I should have been more careful what I wished for when she had no language at age 3!). She also had severe colitis when she was younger but we cleared that up with monthly glutathione IVs over a two-year period. She had been gluten-casein-soy-dye-additive free for years but can now eat whatever she wants -- although I try and keep her dye- and additive-free and give her as much organic food as I can. Nancy Hi Nancy Where is this DR located? Hi Melanie, Dr. Fuhlbrigge is a pediatric rheumatologist at Children's Hospital Boston. We've been seeing him since last August and he orders the IVIG for us at the Children's Hospital Infusion Center in Waltham, MA. Our primary specialist, who originally recommended IVIG a few years ago, is Ken Bock, MD. He's a terrific DAN doctor in Rhinebeck, NY who my daughter has been seeing for almost 9 years. His practice does IVIG but my insurance company will not cover it 100% as they will at Children's. Nancy

I did have to take my daughter off vitamin D -- even though she had very low levels -- because it made her PANDAS symptoms much worse. I tried it 3 different times and each time I gave it to her, the same thing happened. I thought I would try a light box instead. I checked out this protocol and it does seem very radical.

We use quericiplex and have had great success with it. Querciplex contains quercetin, magnesium and bromelain. Quercetin prevents oxidation of lipids, prevents depletion of glutathione from the cells of the intestinal tract, and reduces the immune response to allergens. Any time she has a cold or her allergies flare up, I give my daughter Querciplex and higher doses of Transfer Factor, an immunue booster that she takes daily. Combined, they seem to reduce her symptoms down to 2 or 3 days, which in turn help to minimize her tics.

asaxon, I recommend seeing a DAN doctor, rheumatolgist, or immunologist over a neurologist or psychiatrist for PANDAS. In NY I highly recommend Ken Bock, MD (Rhinebeck, NY), who does integrated medicine. He is a DAN doctor and author of Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies. He has a lot of experience with PANDAS and he offers IVIG at the Rhinebeck Health Center. He diagnosed my daughter's PANDAS 6 years ago and he is wonderful -- a real medical detective. He does not accept insurance though. In Massachusetts I recommend Robert Fuhlbrigge, MD, a pediatric rheumatologist at Children's Hospital Boston. He has been very supportive and helped to faciliate monthly IVIG infusions for my daughter at Children's where we get full coverage from our insurance company, Harvard Pilgrim Healthcare. He wants her to stay on her antibiotics long-term. I also like Elizabeth TePas, MD, an immunologist at Mass General Hospital for Children at Newton-Wellesley Hospital. Nancy

Hi Melanie, As much as I have always hated using meds, Risperdal is the only one that has helped my daughter for years. We used it mostly for rages but it also helped with tics...until she turned 11. By age 7 we had already learned that she had PANDAS and we put her on penicillin, in addition to the Risperdal, and that stopped the rages right away. I found that .5mg was the optimal dose, even after being on it for years. Occasionally it wore off and rather than up the dose, which did not help, it was better to take her off it slowly, get it out of her system, and then reintroduce it very slowly. Sometimes we got only 1 year out of a lifespan, other times 2-3 years, but it always started working right away once we had her at .5mg 2x daily. The only side effect for us was weight gain (about 7 pounds) which she actually needed until she was pre-pubescent. We checked liver and prolactin levels regularly. Prolactin was high at times, but we really don't know what effect it has. We never saw a problem with TD or anything else. It really helped to calm her anxiety, minimize her hyperactivity, even out her moods, and eliminate the tics until her strep antibodies soared to 3000 at age 12. By then, nothing helped -- not the dietary interventions, supplements, Risperdal, or even the penicillin. The rages were horrible and she went from one tic to another. Last year we did a 3-month trial of Riluzole for the OCD. NIH is having success with it on kids who do not do well with psychiatric meds. It's a glutimate blocker that is commonly used with ALS patients. We saw no change whatsoever and when we started to take her off it very slowly, it caused an overnight onset of really bad vocaliztions and non-stop motor movements. It was very scary and debilitating for her. She was angry all the time, very depressed, and her grades took a nosedive. Nothing helped (she has never had success with any other meds) until we started a monthly infusion of IVig. After 3 months the tics were 95% gone, her moods were completely stable, no rages, and her grades improved to mostly As. In addition to the monthly Ivig infusions, the other thing that has helped enormously is daily horseback riding, which she absolutely loves. I am happy to say that for the first time in 10 years, she is completely free of the Risperdal and I have seen no change whatsoever. She must continue to take daily penicillin and her supplements and vitamins (Omega 3 helps) and I try to keep her diet free of dye and additives. I find both dye and additives (particularly dyes) exacerbate her tics. Yeast overgrowth from the penicillin can also make the tics worse. I would put her on a yeast-free diet if I could, but after being gluten, casein, and soy free from age 3-8, there was no way I could get away with a yeast-free diet now. I just try and give her as many organic fruits and vegetables as I can and minimize the carbs. Unfortunately, her body is very reactive to certain vitamins and supplements -- she can't take b12, d, and most probiotics (bifido factor is the only one she seems to tolerate). I also keep our home and grounds toxin free. So for us, Risperdal gave us a more manageable life for many years! Nancy

I thought so, but best to check anyway. We have tried 5-6 different antibiotics over the past 7 years. Penicillin always worked the best and was the least problemsome as far as yeast. The one that we have not tried, which I am interested in trying, is augmentin. I'm going to check with our DAN doctor next month when we see him. In the meantime, we are finding IVIG to have the most profound effect on her symptoms. It has been amazing!! Nancy

I just googled zithromax and risperdal and below is what I found at http://www.drugs.com/drug-interactions/zit...dal_d03180.html. Looks like it can increase the risk of ventricular arrhythmias. I'm sure it must take underlying factors into consideration as well as dosage. Best to check with your psychiatrist. Nancy azithromycin and risperidone (Moderate Drug-Drug) MONITOR: Theoretically, concurrent use of two or more drugs that can cause QT interval prolongation may increase the risk of ventricular arrhythmias, including ventricular tachycardia and torsades de pointes, due to additive arrhythmogenic potential related to their effects on cardiac conduction. The risk of an individual agent or a combination of these agents causing ventricular arrhythmia in association with QT prolongation is largely unpredictable but may be increased by certain underlying risk factors such as congenital long QT syndrome, cardiac disease, and electrolyte disturbances (e.g., hypokalemia, hypomagnesemia). In addition, the extent of drug-induced QT prolongation is dependent on the particular drug(s) involved and dosage(s) of the drug(s). MANAGEMENT: Caution and clinical monitoring are recommended if multiple agents associated with QT interval prolongation are prescribed together. Patients should be advised to seek medical attention if they experience symptoms that could indicate the occurrence of torsades de pointes such as dizziness, palpitations, or syncope.