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ryan

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  1. We've know our now college age kids (now 22 and 20) have had PANDAS since middle school. There symptoms actually go back to when they were toddlers. We just were not lucky enough to have figured things out until much later. We finally found a PANDAS, Lyme friendly doctor when they were 18 and 20. While she primarily treated children she was completely open to working with my older kids and me (I have Lymes). Unfortunately she just closed her practice. Fortunately she referred us to another physician, again, primarily a pediatrician, but very open to treating all of us. I think it is more important you find someone familiar with PANDAS whether or not they are a pediatrician. If they really understand it they will likely treat you. Good luck!
  2. I believe Dr. DeMio, who has offices in Cleveland and Columbus, OH does. I (56) and my 2 children (22 and 20) are beginning treatment with him in May. I have lymes my kids have lymes and PANDAS. Good luck!
  3. Hi. I can tell you we were lucky enough to locate a PANDAS/LLMD to treat my two children over the past 2 years. Among the organization she has sought outside training from is the MedMaps organization. When we have asked her for physician referrals for others we know dealing with PANDAS/Lymes she continues to have us refer them to this organization. If she is representative of the M.D.'s being trained by this organization I highly recommend that you search for resources in CA who have been trained by this organization. Following is a link explaining the mission of this group: http://www.medmaps.org/about-us/ PANDAS has been included as an area of training for this group. I found the following pdf summarizing the training program for PANDAS: http://www.medmaps.org/wp-content/themes/Medmaps/uploaded_file/PAN.pdf AND Following is a link to the MedMAPS resource directory: http://www.medmaps.org/wp-content/themes/Medmaps/uploaded_file/PAN.pdf While I know this is hard stuff, hang in there! As an aside, our wonderful doctor is closing her practice and we are currently in transition to a new M.D. We had been traveling across 2 states to see our "wonderful" doctor. We will now need to travel across 3 to see our new doctor. If you are able to locate someone who understands the combination of things these kids are often inflicted with, the effort is absolutely worth it! The good news is that CA, as a state, probably has more resources available then any other state out there. Good luck!
  4. Hi! While herxing can be annoying, on the positive side, it does mean something is changing. To assist me (diagnosed with Lymes) and my 2 children (diagnosed with both Lymes and PANDAS) in managing potential herxing symptoms our M.D. provided the following suggestions, many of which we tried. Perhaps this might help you: Natural Supports for the Healing Process Please remember that sometimes when chronic infections are treated you may feel worse before you feel better. This is because when germs die they release substances toxic to the body. This process is called a Herxheimer reaction and often is referred to as “die off” or “herxing”. Also, when chronic infection or inflammation is treated, the body’s natural detoxification systems turn on, causing symptoms often referred to as “detox”. The symptoms of “die off” and “detox” can include bowel changes (especially constipation), nausea, fatigue, moodiness, irritability, headaches, muscle aches, hyperactivity, insomnia and sensory overload. To alleviate such symptoms you may try some or all of the following. You do not need to use all of the supports mentioned but may add them as needed. Hydrate. Adequate hydration is needed for healing. Drink plenty of filtered water throughout the day with a goal of 64 oz daily. Mineral Replacement. The healing process, especially gut healing, often results in loss of minerals. Sole Water. Replace minerals with Sole Water which is a salt water made with Himalayan Sea Salt. This is a safe, effective and affordable way to replace minerals. Take 1 tsp of Sole Water Diluted in 8 oz of filtered water throughout the day. Please visit link for more information and recipe http://www.himalayancrystalsalt.com/sole-recipe.html Bone broth. Bone broth is another great source of mineral replacement and also a potent anti-inflammatory. Additional benefits include amino acids, vitamins and healthy fats. In slow cooker put organic beef soup bones with marrow and meat, 32 oz filtered water, 1/8 cup apple cider vinegar, cook on low for 24-72 hours. Cool, strain, pour in glass jar, refrigerate. May cook with fat on top, use gelatinous broth for cooking and serve warm or cold in 2-4 oz portions throughout the day. See link for ordering organic bone broth. http://www.wisechoicemarket.com/bone-broth/ Epsom Salt Bath. Epsom salt is Magnesium Sulfate Salt. Magnesium reduces stress, relaxes muscles, eliminates toxins through the skin and aides with constipation. For a bath mix 1-2 cups in warm bath and soak for 20 minutes. May repeat throughout the day as needed. Treat Constipation. Toxins are eliminated in the stool, so constipation allows toxins to be reabsorbed into the body which worsens “die off” reactions and slows the healing process. Ensure a bowel movement at least 1 – 2 times/day If constipation occurs, treat immediately with: 1. Hydration. Filtered water with a goal of 64 oz daily. 2. Sole Water. Take 1 tsp in 8 oz per day. 3. Mineral oil. Take 1 tablespoon twice daily until bowels move. This is a very safe intestinal lubricant, rather than a harsh laxative and will not interfere with medication or supplements. Available at any pharmacy. 4. If Mineral Oil alone is not effective, continue taking it and add: Cascara Sagrada. This is a safe and gentle natural laxative. Take 1 cap (450 mg to 500 mg) in the am and at bedtime. If not effective then please call for advice. Available at Little Flower and most pharmacies and health food stores. Treat Nausea or Stomach Upset Activated Charcoal. Take 1 capsule 1 hour after meals to bind toxins and eliminate in the stool. Watch for constipation and treat if it occurs. Available at most pharmacies and health food stores. Support the Liver. The liver is our major organ for detoxification. It needs support during the healing process. Bubur Detox by Nutramedix. This is an herbal remedy that supports detoxification through the liver and is safe for children and adults. Use according to the directions on the bottle. Take twice daily scheduled. May also use every 15 minutes as needed for detoxification symptoms such as hyperactivity, sensory overload or irritability. Available at www.amazon.com. Section on Essential Oils removed at Wombat's request Organic Dandelion Root Tea. This is a safe and effective liver support. Traditional Medicinals and Alvita are nice organic brands. Available at most grocery stores and health food stores. You may use raw honey to sweeten it and server warm or cold throughout the day. Complimentary Therapies. Supporting the body through the healing process is essential. The following complimentary therapies can help with the healing process: Massage, Acupuncture, Cranio-Sacral Therapy, Chiropractic Care, and Homeopathy. Please contact our clinic for referral information if desired. Colon Hydrotherapy. Colon Hydrotherapy is gentle way to cleanse the colon. A small amount of filtered, temperature controlled water flows gently into the colon, softening the waste and stimulating the colon’s natural muscle contractions or peristaltic action. The softened waste is naturally released. This process is repeated several times until the entire colon is cleansed. This is a safe, effective method of removing waste from the colon or large intestine. We typically refer our patients to Esther, Certified Colonic Hydrotherapist and Nutrition Counselor, at Holistic Health and Fitness. For more information and to schedule an appointment visit: http://www.holistichealthstl.com Remember you may feel worse before you begin to feel better. Be patient and feed the body healthy, nourishing foods and filtered water!
  5. I can absolutely relate. We discovered both my children had PANDAS about 8 years ago, after years of trying to figure out why my Sons OCD and my daughter's tourettes would appear, seemingly out of no where, last about 3 months and then go away. With the OCD and Tourettes we had ADHD, dysgraphia, sleep, sensory and digestive issues and more. Around the same time we learned about PANDAS my daughter was also diagnosed with lymes. While we continued to read everything we could about both these issues, it was quite difficult to get any physician to support us. Once we learned what they had was PANDAS, as soon as our daughters next tourettes bout began, we took her in to see the pediatrician and pleaded with her to try a shot of penicillin. Within 3 hours all of her tourette symptoms stopped. From that point forward, everytime she had an outbreak we would take her in, re-plead out case and get her a shot. Each time the tourette symptoms would stop within in 3 hours (vs the 3 months when we didn't know she had PANDAS) Unfortunately for our Son, we were never able to convince a pediatrician to do this, despite the fact that his symptoms came and went in the same fashion as our daughters. Tired of managing in this way my husband and I attended the Midwest PANDAs meeting 2 years ago last summer in the hopes of finding a PANDAS friendly physician willing to treat both our kids. We found one, but she was in St. Louis. For almost 2 years she has successfully treated both of my kids. Placing them both on a prophylactic course of penicillin to stay off strep and after a series of bloodwork, stool and urine tests began to treat & improve many nutrient deficiencies, immune and food challenges. Neither of my children have had a PANDAS outbreak since beginning treatment with her. She is now leaving her practice (as I noted in another post today) and provided us some perspective regarding locating a physician who could pick up where she will be ending. The sites she suggested we search for a new physician are as follows: http://www.pandasnetwork.org/research-resources/us-providers/ http://www.medmaps.org/clinician-directory/ http://ilads.org/ilads_media/physician-referral/ In case you have not seen the other post I answered, we came up with the following list of M.D.'s to consider: WISCONSIN Dr. Kyle Van Dyke M.D., Edgarton, WI -- Listed on PANDAS directory http://www.wisconsinhyperbarics.com/kylevan.html IOWA Dr. Jon Ahrendsen, MD, Clarion, Iowa -- Listed on MedMaps & PANDAS directories http://www.iowaspecialtyhospital.com/doctors/jon-ahrendsen/ ILLINOIS Dr. Anju Usman M.D., Naperville, IL -- Listed on MedMaps & PANDAS directories http://www.truehealthmedical.com/the-practice Dr. Miroslav Kovacevic M.D., Hinsdale, IL -- Listed on PANDAS directory http://webpediatrics.com/practice.html Dr. Donald Raden M.D., Highland Park, IL -- Listed on MedMaps directory chicagointegrative.com http://www.chicagointegrative.com/raden_bio.html Dr. Georgia Davis M.D., Springfield, IL -- Listed on MedMaps directory http://www.georgiadavismdspringfieldil.com/ Dr. Lisa D. Crutcher M.D., Sycamore, IL -- Listed on MedMaps directory http://rmg.nm.org/find-a-doctor/find-a-doctor-profile?id=2549 OHIO Dr. Phillipp DiMio, Cleveland & Columbus Ohio areas -- ILADS Physician, Our St. Louis M.D.shared: "I am a fan of Dr. Phillip DeMio MD in Ohio who is, leader in ILADS, and takes a very functional/integrative approach like me, only has been doing it longer.” www.drdemio.com I know this is all so daunting, but with the right support life can become so much easier. Things improved in all ways once we aligned with a PANDAS/Lyme knowledgeable physician. As an aside, the physician we are sadly leaving has a daughter with autism and PANDAS and the new physician we are aligning with has a child with Autism. In our experience, whenever one of our physicians or healthcare providers have had a loved one with a challenging condition they seem to push and identify approaches far more impactful then the standard M.D. My two kids are now a sophmore and a junior in college and educationally are thriving. Hang in there! . . . I live in Appleton, WI
  6. We determined late middle school that our 2 kids have PANDAS. We had great difficulty identifying an M.D. familiar with PANDAS and spent a number of years attempting to convince pediatricians to treat our kids. About 2 years ago, we attended the Midwest PANDAS conference in St. Louis and finally located a physician willing to take us on. She has been PHENOMINAL and has treated both my kids for PANDAS and Lyme Disease (we discovered my daughter had Lymes about the same time we uncovered the PANDAS. Our St. Louis M.D. uncovered Lymes for both my son and myself). She is in the St. Louis area and we live in Wisconsin. She has kept both of our kids on a prophylactic dose of penicillin to stop them from getting strep while aggressively treating their lymes. Immediately proceeding our initial appointment she ordered an array of tests (including blood, stool and urine tests) to look at a broad range of markers – never assessed by any of our prior physicians. Additionally, 1 week prior to each of our quarterly appointments she orders a complete set of labs to assess our overall progress and rework our med/supplement plans. Unfortunately she is now closing her practice and we have had to locate a new physician. Fortunately, with her help we have identified a new physician who should be able to pick up where she left off. He is in Ohio, but we will make it work, because we truly believe a knowledge base regarding both PANDAS and Lymes is optimal – given the progress we have made since identifying a PANDAS/Lyme M.D. neither one of my kids have had a PANDAS outbreak and a number of their Lymes symptoms have dissipated. Our St. Louis M.D. advised us to search the directories of the following resources to identify a new physician: http://www.pandasnetwork.org/research-resources/us-providers/ http://www.medmaps.org/clinician-directory/ http://ilads.org/ilads_media/physician-referral/ We searched the sites for M.D.’s and came up with the following options: WISCONSIN Dr. Kyle Van Dyke M.D., Edgarton, WI -- Listed on PANDAS directory http://www.wisconsinhyperbarics.com/kylevan.html IOWA Dr. Jon Ahrendsen, MD, Clarion, Iowa -- Listed on MedMaps & PANDAS directories http://www.iowaspecialtyhospital.com/doctors/jon-ahrendsen/ ILLINOIS Dr. Anju Usman M.D., Naperville, IL -- Listed on MedMaps & PANDAS directories http://www.truehealthmedical.com/the-practice Dr. Miroslav Kovacevic M.D., Hinsdale, IL -- Listed on PANDAS directory http://webpediatrics.com/practice.html Dr. Donald Raden M.D., Highland Park, IL -- Listed on MedMaps directory chicagointegrative.com http://www.chicagointegrative.com/raden_bio.html Dr. Georgia Davis M.D., Springfield, IL -- Listed on MedMaps directory http://www.georgiadavismdspringfieldil.com/ Dr. Lisa D. Crutcher M.D., Sycamore, IL -- Listed on MedMaps directory http://rmg.nm.org/find-a-doctor/find-a-doctor-profile?id=2549 OHIO Dr. Phillipp DiMio, Cleveland & Columbus Ohio areas -- ILADS Physician, Our St. Louis M.D.shared: "I am a fan of Dr. Phillip DeMio MD in Ohio who is, leader in ILADS, and takes a very functional/integrative approach like me, only has been doing it longer.” www.drdemio.com After going through this process we have decided to go with Dr. DiMio in Ohio, an 8 hour drive. If he can truly pick up where our St. Louis doctor left off we believe the traveling is well worth the time and cost. Finally, I can tell you that PANDAS falls under the classification of encephalitis, so the doctor you noted may very well have some insight to provide. If she is geographically close, check her out while you check into some others that may understand both issues. Good luck!
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