Uma Kukathas

My daughter was diagnosed with PANDAS two and a half years ago and had all the symptoms you describe except the chills. Some went away very quickly after the first round of antibiotics (the throat clearing and facial grimaces), but others took a LONG time to get better. She had bad joint pain for more than a year and a half and that has only recently gone away so she can run comfortably again. Her headaches persisted for a long time, but we've seen them really diminish as well. We think her headaches were a result of her balance being impaired. She was evaluated and did OT exercises that really helped with balance, and the headaches lessened and then went away. Her stomach pains have also been reduced in severity, although she still experiences discomfort. We are trying various ways to help her with that, which at this point is really her only remaining symptom of PANDAS. We see Dr. Keller as well, and she has been so wonderful. My daughter absolutely loves her. Has Dr. Keller recommended other immunologists? I hope your son gets some relief - it is a lot to deal with every day. My daughter was a very cheery and easygoing girl, and after the PANDAS she was complaining about everything, I think because her entire body hurt and she felt out of sorts all the time. It took a while, but she is pretty comfortable (and cheerful again) now that much of the inflammation is down. Best of luck to you. Uma

Hi, My daughter was diagnosed (sort of--her pediatrician didn't really believe in PANDAS but conceded it was possible) 2 years and 3 months ago when she was 6. We have used natural remedies almost exclusively, with the exception of several rounds of antibiotics for active strep infections. I would say that my daughter is almost completely recovered. Symptoms return in mild form when she is exposed to strep. She is probably more anxious than she was before the PANDAS (she is not as fearless as she was), but no one would ever guess it because she is generally a very friendly and happy girl. There are no signs whatsoever of OCD. That is, unless she has an active strep infection. But then we know to treat with antibiotics. After we discovered it was PANDAS she had a round of antibiotics, which really helped. We thought that was the end of that. Then symptoms came back in full force. Second round didn't help. We were advised to put her on SSRIs, prozac, and ADHD meds. We decided to try a different route. Probably the most helpful thing of all was changing my daughter's diet. We eliminated all gluten and dairy. We did intolerance food testing (not very reliable, I know) and peanuts showed up, so we eliminated those as well. We gave her lots of fresh vegetable juices. I gave her a rice protein powder every day. I also gave her a lot of coconut oil and cooked with tumeric (I am of Indian descent). We cleaned up her diet completely so (with the exception of the protein powder) she was only eating whole foods. After about 4 weeks she seemed to calm down quite a bit, although the OCD was still evident. We started her on inositol (3 g twice a day), which began working wonders after about 6 weeks. I think this was the single most important factor in her overcoming her OCD. She is still on it, and we notice that when she goes off it for more than two weeks she gets tense. She also takes B12, fish oil, probiotics, and Intrakid multivitamins. She started horse riding lessons, which helped her get over her germ aversion. At the PANDAS onset, she was washing her hands hundreds of times a day until they were raw. She avoided everything that was "dirty," which meant she couldn't touch anything at all--her toys, her parents, her brother, her dog. She sat in a chair or tiptoed around the house to make sure she wasn't touching anything dirty. She had a screaming fit if anyone picked up something from the floor--they would have to wash their hands. She refused to go outside. Now she cleans stables and shovels manure! She has also been under the care of an excellent homeopath, who has given her a number of remedies over the last two years, including belladonna, carcinosin, cinna, and phosphorus. All of this was trial and error, and she went through many months of agony and our lives were a complete mess. (I know people on the forum know what that is like.) But we saw the symptoms gradually waning and now she is an incredibly vibrant and happy child. We had to do a lot of this all on our own because the doctors (neurologist, pediatrician, psychologist) wanted to medicate her (ADHD meds, SSRI, prozac). But we did find a few wonderfully helpful people along the way (naturopath, nutritionist, homeopath) to guide us. I don't think we're completely out of the woods, because when she gets strep the symptoms return (although only we notice them). But I am glad that we didn't have to use the medications that were recommended to us--and which we were told she would have to be on permanently. We now have a wonderful pediatrician (whose specialty is infectious diseases) who encourages the use of alternative medicine and in fact seems to think that it is the most promising way to help her to recover completely. (This is NOT to say that she thinks this is what is best for any child at any given time--she has also used IVIG and Plasmapheresis on a few of her patients, and wants to put our daughter on prophylactic antibiotics to avoid repeat infections.) We were very lucky because we recognized early on that it was PANDAS we were dealing with. But it has taken more than 2 years using (mostly) natural means to finally come to a happy place. I have a list of things that we tried, what we think worked, what didn't, etc. If you'd like to email me I can give you that info. My post is very long as it is... I hope this is helpful. Best wishes to you and I hope things improve for your daughter. Uma

When I was on vacation in Bali a few years ago, I had terrible sinus congestion that nothing seemed to help. One of the hotel staff brought me a vial of coconut oil and told me to rub it around my nose and temples. It was incredible--I had almost immediate relief. I used it for about four days and my sinuses cleared completely. Since then, that has been my remedy of choice (although it is messy and the coconut oil has a strong smell--but to me it's worth it). I since learned (from my aunt) that raw sesame oil (not the toasted Chinese sesame oil) has similar benefits. Sesame oil is also used in India as a throat gargle to kill strep and other bacteria. Ayurvedic medicine highly recommends massage with sesame oil because it guards against bacteria and fungi. In Southeast Asia, massage is done with coconut oil for similar reasons. I've started massaging my kids with both of these oils, not only for the health benefits, but because it relaxes them and they love the physical touch. If you don't like the lingering smell, you can do it just before a bath, although it is good to let the oil absorb into the skin for a while. If you or your child is on a gluten-free diet, you might want to check out coconut flour as well.

Emma, We definitely saw an increase in PANDAS symptoms with a viral illness. My son had the flu, and my daughter's OCD and emotional lability got really bad even before any flu symptoms were noticeable. The PANDAS symptoms waned slightly after she got over the flu. But they were still bad. I believe they eventually decreased because of the dietary changes and supplements, and not just because the virus was out of her system. Our naturopath suggested lots of vitamin C and selenium picolinate while she had the flu, and the viral illness did pass relatively quickly, but again the PANDAS symptoms took longer to die down. My earlier posting lists the dietary changes we made to support her overall immune function improvement. What are your daughter's symptoms? One thing that brought relatively quick relief to our daughter, who had severe mood swings, was Natural Calm Kids (a magnesium supplement with Vitamin C and zinc). She seemed much calmer just within a couple of days of starting on it. I hope things get better for your daughter soon. Uma

Faith, my daughter is six. The diagnosis was January 2008, a few days after her extreme symptoms appeared. However, we noticed changes in her behavior before that, in the early fall, a week after her kindergarten shots (which included chickenpox and MMR). These included frequent urination, separation anxiety, and loss of reading and handwriting skills. We put them down to the adjustment to kindergarten (although she is so smart and outgoing and always loved preschool, we found this very odd). In December she had a sore throat, and we found out later that one of the kids in her class had scarlet fever. But our daughter's sore throat was pretty mild and cleared up with little intervention. It was after we returned from Christmas vacation that her symptoms suddenly exploded. It turns out everyone in the family had strep, although none of us had the usual symptoms. I'm not sure why the doctor didn't suggest a different antibiotic after the amoxicillin. After I read more about it, I wondered why she didn't suggest Zithromycin. My daughter's symptoms continued even after the strep infection was treated. Her symptoms were so bad we kept having her tested, thinking she must have strep, but tests came back negative for an active infection. She did have several viral infections, which probably exacerbated symptoms. We are so pleased that the dietary changes worked relatively quickly. (It felt like a long time to us, but I understand that a lot of kids suffer far longer and with worse symptoms.) I think healing her stomach was the key, and the cleansing diet really did wonders. Although we have always eaten a mostly organic diet, she had been eating all her offending foods daily before the dietary changes. At times I felt that perhaps the "absolute" diet and supplement regimen was too traumatic for her, especially given all she had been through, but the relief it provided was worth it--even she thinks so now. We are also extremely lucky because I am self-employed and could continue to work even when the kids were home. In terms of how we were able to find and implement all this in a couple of months, I read everything I could get my hands on regarding PANDAS, OCD, vaccines, metal toxicity, ASD, etc. I must say that this forum was my most valuable resource. I read and read and found what worked for people, and I used their experiences as stepping stones to do my own research. For example, Chemar, I read your postings on Monolaurin, which is what inspired us to add a lot of coconut milk to our daughter's diet. I pray my daughter continues to improve, and that all the children I've read about over the last couple of months on this site get better as well. Again, I can't emphasize enough how this forum and reading about others' experiences helped us.

Hello-- Our daughter was diagnosed with PANDAS in early January, and as you all know from experience it has been a traumatic few months for her and the rest of our family. We had little luck with conventional doctors (who offered SSRIs but little else), but I found this forum (I have read it often, but never posted before today--you are the best source of information on PANDAS out there, so thank you), several excellent naturopaths, and a great deal of information online and in various books on autoimmune disorders, OCD, and autism spectrum conditions that have helped with her healing. After two and a half months, our daughter has shown remarkable improvements, despite several difficult setbacks. She was treated for the strep in January and symptoms abated. They returned with a vengeance, and a second round of amoxicillin didn't help. We have since treated her using natural means--mainly focused on diet. We know future setbacks are possible with bacterial and viral infections, but right now she is doing remarkably well--almost back to her old exuberant self. She never had tics (except "piano playing" with the active strep infection), but her OCD was extreme (handwashing until her skin was raw), and her mood swings intense. Now she washes her hands only when she needs to (I even have to remind her to do so sometimes--I never thought that would make me so happy!) and is pretty calm and happy most of the time, although she seems more tense to us than she was before the explosions of symptoms in January, and there are some lingering OCD issues (she has a phobia about the bottoms of people's shoes). If it is of help to others, I wanted to share what her path to recovery included: (1) blood and urine testing to reveal gut dysbiosis, food sensitivities, and vitamin/other deficiencies—sensitivities to wheat, dairy, and peanuts; low B12 levels; high oxidative stress; (2) Removing offending foods; (3) “Pure” organic diet with NO refined sugar or artificial anything, lots of coconut oil and coconut milk, protein every four hours, fresh vegetables and vegetable juices, cilantro pesto, an apple a day (after week 6 only; for the first few weeks we eliminated natural sugars as well); (4) Supplements and herbs, including Inositol (for OCD), sublingual B12, probiotics, CoEnzymeQ10, Vitamin C, fish oil, evening primrose oil, Natural Calm Kids, Melissa herbs, Milk Thistle (for liver detox). We withdrew her and her brother from school, since it was flu season, and limited exposure to viruses until her immune system was strengthened (one viral exposure brought on severe symptoms). She has had two sessions of CBT. We think she will be ready to go back to school after spring break. We also plan to do metal detox, using PCA-rx, and a parasite cleanse. We hope to wean her off some of the supplements as her stomach heals. It has been an extremely hard road for our formerly exuberant and fun-loving daughter (finding she is suddenly a "different person," then giving up school and her favorite foods and completely changing her diet), but she has done great, and we are so very proud of her. I hope this description of our experience is of help to someone. Please feel free to email me if you have questions.