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  1. Yesterday
  2. Thanks everyone for your replies....I am very grateful and thank you for the virtual hugs too. My daughter's symptoms resolved in about a day (knock on wood) but I put a call out to our ped for advice and whether to test for PANDAS/PANS Our ped thinks it could be related to her being sick but doesn't necessarily think PANDAS. She is referring my daughter to the neurologist as well to be safe. My son's swab came back negative and we have to wait for the neurologist to try and move forward with bloodwork (still waiting to find out.when his appointment is). I am hopeful our appointment with the naturopath can reveal more information that will help us....like really really hoping. I am tempted to book an appointment for my daughter but will probably wait for my son's first appointment and see how that goes. Nursemomof4: did your Naturopath do in depth bloodwork and swabs? How hard and long was the detox? (I am okay with the idea of a detox if necessary but my son is only 2 and I want to make sure he doesn't miss out on much needed vitamins and minerals to grow strong and healthy while detoxing.....although if a detox is needed he probably is having trouble getting what he needs now as is.) Has your son officially healed / is he in remission? Thank you for sharing your story and words of encouragement!
  3. Last week
  4. It has been suggested that my 24 and 20 year old kids, both with Tourettes, consider using Gotu Kola. Does anyone have experience of this? It comes recommended as being suitable for Tourettes in the Medical Medium blog. Many thanks, Kim http://www.medicalmedium.com/blog/gotu-kola
  5. Desperate for Sleep

    Just wanted to update in case this might be helpful to anyone else. Llmd started my son on GABA supplements and for the first time in years, he’s been sleeping through the night! I know the is no one size fits all answers when it comes to PANDAS/PANS, but, for what it’s worth, the GABA has been life changing (even in this short time). O_bear, we also mainly have had trouble in the night, or the most trouble, I should say. If you’re interested, I can let you know the name of the supplement we are using. Best of luck to you. Not sleeping is the worst.
  6. It has been a few years since I post in this forum. My son start to experience temple receding hairline last August and in just 6 months, the hair thinning is getting noticeable. There is no family history on my side but my husband has frontal receding started in his early 30's but he is receding very slow. Just wondering such early hairloss has to do with my son's past tourette syndrome, along with food, environmental and chemical allergies, eczema, and seborrhic dermatitis on his head and face. Just found out my son has Gilbert's Syndrome recently, just above normal. My son wants to try Rogaine as prescribed by his dermatologist. Appreciate any feedback or suggestions is greatly appreciated.
  7. Hi motherof3, we are glad you wrote and welcome to the Forums. What is the date for your PANDAS evaluation? It sounds like you have already started some key dietary efforts. Even when PANDAS is involved, it can be helpful to avoid potential triggers as you figure things out. It takes time to get accustomed to different terms, like additives. Just do the best you can at this point and look for foods with simple ingredients. The Failsafe cookbook will avoid salicylates, which may or may not be an issue for you. I raised 3 kids, one with Tourette's, and know you have your hands full. Trying to figure out triggers adds to your stress, I know. Have you been able to keep a detailed log with what is being eaten and how symptoms are--as well as other exposures? That can be the key, because you can be closing in on some triggers when other issues come in and confuse things on a day to day basis. You mention sensitivities to a detergent -- it seems an allergic issue could be part of the picture. Is your family allergic -- and has anything changed in the last several months? Like a new location, renovations in the home, different school, new pet, etc? Steam cleaning furniture that needed it is a good idea (without scented products, as they often use!) When looking for triggers, it can be helpful to see a naturopath or doctor who understands this type of approach and is familiar with nutritional approaches that can support the nervous system. It can be difficult to go it alone. Is that a possibility? Sometimes there is a significant underlying problem, whether an infection or allergic reaction, or nutritional imbalance that is tipping the scale. Could you let us know a little more? I apologize for the late response to your note! I look forward to hearing back from you, Sheila
  8. You did mention your moldy house. You can also search here for mold and find a lot of discussion - it is a recognized environmental trigger at pandasnetwork.org, which is a rich source of info in case you are not aware of it. Do you have any option even just to try a different location for a week or two, to see if there is a difference (including when you come back)? I would tend to believe that, with a lot of patience, you could find something that would help your symptoms, possibly only somewhat like Xifaxan has, but perhaps much better. It would take work and energy that you may not have. So, lean on us here, ask questions. This forum is not as fast-paced as most facebook groups, but there is to be a wealth of experience here.
  9. How much Natural Calm?

    Hi mlee The magnesium in Natural Calm is citrate, so can have a laxative effect. I would stick to the recommended age appropriate dose
  10. HI! How much Natural Calm do you give your child? We are giving 1/2 t. /2x day. My child is 58 lbs. Wondering if we should give more.
  11. This is so helpful! For the strep test, blood would be a draw and the others a swab? Or how is that done? At the pediatrician's office or at a children's hospital? Thank you! I would ask your pediatrician to test both kids for strep (in the blood as well as the throat, nose, rectum). Strep hides in various places...sinuses/ears, etc. That has always been my gripe with pediatricians.........these kids test positive, they give them an antibiotic, but no-one ever tests them after the completion to see if it if fully resolved?! They don't even tell people to change out their childs toothbrush 48 hours after they start the antibiotic so they don't re-infect themselves. Anyway, Strep may not be the only cause, but I would start there and then get in to see an infectious disease doctor for further more in-depth testing for other causes.
  12. Thanks so much for your response Sheila! So far this week, we have just implemented, NO Gluten, NO MSG, NO artificial colors, and NO/Low Salicylates. Supplementing Natural Calm unflavored 2x/day. He's a picky eater, so doing our best. We did Epsom Salt baths 2x, and the 1st time his cheeks were really red and the 2nd time, he had a little rash on his back, so we stopped them immediately. I'm thinking it's the sulpher. Could a sulpher issue be a sign of something else? We go back to the Naturopath in 1.5 weeks to see the results of the blood test for food sensitivities test. But I know there could still be intolerances/sensitivities that wouldn't show up. The next day I have an appointment with a nutritionist who came recommended to me. I think she will be most helpful. I just purchased your books, thank you! How do I find out if there is any underlying infection? What test would that be? Is that with a traditional pediatrician or a naturopath? What type of infection? Also...are there good toothpaste and shampoo recommendations out there? Also, do most kids just drink water or some milk type while doing a modified diet? Thank you Sheila. Just getting responses from people is so helpful and supportive. I really appreciate it! Marie
  13. Hi, I read your blog and I am a mom of 4 kids, my 14 you was dx'd with PANDAS a year ago ( I can remember the date). I am sending you that virtual hug and telling you not to give up hope. You are a mom, and you will find that inner strength when it comes to fighting for your kids (maybe not so much strength when it comes to fighting for ourselves, but it's a different ball game when it comes to our children). I am a nurse and I have never been to a naturopath, until this rocked my world. I kept telling my pediatrician that something was wrong and I believed it to be from the strep and Influenza he was just diagnosed with. My son was old enough to tell me something was wrong "in my brain" and the sudden changes were WAY out of character for him. I tried getting into a therapist but the wait was forever. Against my better judgement the pediatrician wanted to try Zoloft and then increased the dose a few days later. It was like pouring gasoline on a fire! My son ended up with Seratonin Syndrome (which I told my peds what it was and we had to get sent into Boston). I wanted all of the SSRI's out of his system and I wanted answers. A friend suggested a Naturopath. I e-mailed him my story, he got us right in and looked at my son and said I am going to help you, and then looked at me and said you need to call MGH tomorrow, I think your son has PANDAS. He was the first person to figure it out. He was amazing.......he put him on supplements to detox his liver, neuro calm, tested his food sensitivities, tested his gut (very high yeast), even did acupuncture which I never thought my son would agree to. He was willing to try anything to feel better. The naturopath really saved us time and got him on the right track. I have been told that siblings are likely to also get PANDAS, and when the child is exposed to a virus or bacteria, they start "flaring" (showing signs of when they first developed it). The one thing I have noticed (and my son verbalized on his own) was that Aleve 2 x /d made a big difference in his behavior and how he felt. I would ask your pediatrician to test both kids for strep (in the blood as well as the throat, nose, rectum). Strep hides in various places...sinuses/ears, etc. That has always been my gripe with pediatricians.........these kids test positive, they give them an antibiotic, but no-one ever tests them after the completion to see if it if fully resolved?! They don't even tell people to change out their childs toothbrush 48 hours after they start the antibiotic so they don't re-infect themselves. Anyway, Strep may not be the only cause, but I would start there and then get in to see an infectious disease doctor for further more in-depth testing for other causes. There is so much more I could say to you, however I really wanted to just tell you that you are on the right path and don't give up! Wishing you better days ahead
  14. Hi So sorry you have not had responses and hope someone with more knowledge may be able to offer advice. My uneducated suggestion would be to look into PANS if both children are showing similar symptoms. Here's that (((HUG))) of support, as I know only too well how scary all this can be. I do hope you get answers and effective treatments for both your children.
  15. New Blog!

    Thank you for this! I JUST got diagnosed in December and there’s virtually nothing on adult PANDAS online. I’ve felt like I’ve wasted 5 years of my life in some ways and haven’t done anything really worthwhile since I graduated high school. I hope once I’m cured that I will be more productive
  16. Thank you all for your thoughts. DS now has the flu, so it’s hard to tell what is happening and after, I’m imagining, it will be even harder to tell what’s going on. I’m so frustrated. I feel like I’ll never figure out what’s going on- what’s causing what. Bws1565, I hadn’t ever thought about that. I will have to pay more attention. Thank you.
  17. New member and mystery illness

    Fiddlegrl -- Welcome to the forum, though I'm sorry for all you've been through and the issues you're still fighting. I will say that I've been with this forum for many years now...first during my DS's illness and healing, and then somewhat less frequently for the last few years, checking in to follow up on old friends and any new research, and to chime in when something resonates with my experience. Pretty much ALL of the symptoms you've described, unfortunately, have been discussed here as part of the PANs/PANDAs continuum. It stinks. I don't have any practical experience with respect to Lyme and its co-infections; my DS's syndrome was clearly strep-related, though seasonal allergies exacerbated inflammation and the immune response for a number of years, once the PANDAs had kicked into high gear. Like you, though, we believe his behavioral issues were tied to atypical strep infections potentially as young as 3 years of age, though certainly by the age of 6 when he was officially given an OCD diagnosis. But he never tested positive (via swab and culture) for strep at the time, and no local doctors would give us the time of day regarding PANDAs then, either, so he went without any real treatment until he hit 12. That's when the PANDAs brought him to an absolutely non-functional state, the research coming out of NIMH, Columbia and Dr. Cunningham had progressed, and we were finally able to talk someone into an antibiotic trial. It was a long road, but the rest, as they say, is now thankfully pretty much history. As a result of our experience, though, I do think it likely that PANDAS/PANs sufferers who are at a more advanced age before receiving immune and/or anti-inflammatory therapies may have a harder road with respect to healing and "bouncing back;" not sure if that's because the brain "wiring" has matured more in the interim, or if the chronic inflammatory and auto-immune responses in the body are somehow more entrenched and therefore harder to reverse. In the end, it took my DS about 5 years in total to return to pretty much full functionality, and that was with auto-immune, therapeutic and psychiatric interventions all thrown into the mix. He continues to contend with some OCD and situational anxiety now and again, and I'm not convinced that this will ever disappear completely. But those issues remain at manageable levels (knock on wood), and he's happy and healthy and constructive and functional. Pretty much all we could ask for, after what he went through. I'm not sure how to advise you on any possible next steps, really, except to suggest that perhaps exploring some additional genetic markers and methylation issues might help you for the long term? You mentioned genetic testing for porphyria, but did you get a full work-up? A search here on the forum for "methylation" and "mutations" will lead you to multiple discussions regarding the methylation cycle and how genetic testing has helped point some families to a regimen of supplements and/or medications that proved to be more effective for them in light of various mutations and genetic predispositions. Perhaps that's worth a try? Finding a well-versed LLMD and/or integrative physician who could be your partner in working through these issues would be a bonus. Your post was very well-written, so I'm picturing an intelligent, capable and fairly "together" young woman, so I sincerely hope you're finding moments of joy and contentment in your everyday life, despite this tremendous burden. All the best to you!
  18. Hi, I am new to this forum. I thought I would introduce myself, and also wondered if anyone might have suggestions about some unexplained symptoms that I experience. I am 23 years old. I was diagnosed with PANS a year ago by a neurologist who diagnosed me based on my symptoms, and also through my Cunningham Panel results. I was treated with one course of IVIG over a 3-month period, which didn’t have any effect on my symptoms. I’ve had many tests done to evaluate for infections and other conditions, including brain MRIs, lumbar puncture, many blood and urine tests, etc. I have a positive Igenex Babesia FISH test. I also have a positive Bartonella serology through Galaxy Diagnostics. I have 4 bands on my Lyme Western Blot. I’ve taken several courses of antibiotics for Mycoplasma (which I now test negative for), and the possible Babesia infection. I may have first developed PANS when I was 7, with sudden onset OCD, separation anxiety, etc. after some type of illness w/ vomiting and high fevers. The symptoms I developed after this illness lasted for several years, but the severity seemed to subside with time. I didn’t know about PANDAS/PANS at that time. Years later, I became sick with various symptoms right before high school, and was diagnosed with postural orthostatic tachycardia syndrome (POTS). I also developed symptoms that resembled OCD, anxiety, and depression, and also had trouble concentrating, around the time of the POTS dx. Neuropsych testing showed some trouble with executive functioning. I’ve tried several SSRIs and stimulants over the years, which helped somewhat at first, but have become less effective as my mental symptoms have worsened. My mental and physical condition has progressively worsened. Also, since I was young I’ve always felt different from other people, even around those who have struggles similar to mine, such as OCD. For example, I have trouble interacting with people. I have many mental and physical symptoms. My mental symptoms include: severe anxiety, extreme fear of vomiting, OCD, tics, irritability, rage, angry outbursts (this involves episodes in which I cry, scream at, and blame my parents for making mistakes); mental fatigue, apparent loss of previous cognitive skills, inability to engage intellectually in most activities, difficulty concentrating and processing information (not able to absorb most content on TV, when reading), lack of comprehension in certain areas; trouble maintaining interest in more than a few topics at one time; trouble finding my way around places, and mental exhaustion in communicating and with simple tasks. Also, I’ve had the fear of vomiting for years, but until recently I didn’t fully recognize that what I was feeling was actually fear and anxiety. There’s also an aspect to what I experience, which is hard to describe, but I feel that it is mentally painful to be conscious all the time, even while I’m at rest. When it is at its worst, it feels that my mind is on fire and it feels absolutely unbearable to be conscious. When this happens, I will scream and cry uncontrollably, and Ativan is the only thing that helps blunt the pain somewhat. These episodes often result in me running around, crying, and screaming at the top of my lungs. When this “mental” pain is at its worst, I often will also feel pressure in my head, tension/stiffness in my neck, and a feeling like my mind is being squeezed. In general, I have a constant sensation of something blocking the flow of my thoughts, and a resistance when I attempt to think. I feel that my mind is stuck in a pattern of repeating thoughts/ideas. My parents assist me with most daily activities. I noticed an improvement in my ability to process information when I took Xifaxan for 7 days (for possible SIBO). My physical symptoms include: Feeling full quickly when I eat, which has resulted in dramatic weight loss; chronic constipation, autonomic dysfunction symptoms, generally feeling very unwell, chills, severe fatigue and weakness; body aches, both aching and shock-like pains in back, legs, arms; abdominal pain, burning and gnawing sensations in stomach, abdominal discomfort and inflated feeling in abdomen, constant feeling of pressure behind eyes, intermittent involuntary eye movements, eyes are sensitive to light; ear pain, shortness of breath, mucus in throat, headaches, itching and burning skin sensations (face, around mouth, legs, upper back). My neurologist thought I might have porphyria, but my tests have been normal. My urine sometimes changes from straw color to reddish brown when exposed to sunlight. I had a genetic blood test done for the acute porphyrias through Mayo Clinic. The test identified two heterozygous mutations, one on the HMBS gene, and another on the CPOX gene. The interpretation of results: One alteration is a polymorphism of the coproporphyrinogen oxidase gene that modifies the effect of mercury on porphyrin metabolism in humans, resulting in the excretion of high levels of atypical porphyrin upon mercury exposure. The other alteration, which is on the HMBS gene, is described as a variant of uncertain significance. The interpretation states that the results are not enough to establish a diagnosis of acute porphyria. I also had been living in a moldy environment for a number of years. I apologize for writing such a long post. I just feel so lost and helpless. I’m not sure how much PANS could account for my problems. Thank you for taking the time to read my story.
  19. I have posted this before, but it bears merit to repeat. Sometimes even though the supplements are good, and detox well, some kids cannot handle it. If the body is not getting rid of the released toxins fast enough, you will get serious issues (like what you mentioned before). I will refer to my grandfather, when in the hospital with severe liver disease, and talking a lot of nonsense, the doctors gave him an enema. As soon as his colon cleansed, he was back to normal, mentally. With our kids, we might no know how stressed their digestive systems, and as a result, their livers are. Making sure that they have a bowel movement AT LEAST ONCE A DAY is a must! Some kids might need more. You will see the difference immediately. I know I have. You can use enemas if necessary, but gentle colon cleansing is probably better.
  20. Following....I feel like we are goimg through something similar, though haven't received a PANDAs diagnosis to this point. I am encouraged to hear that your daughter's symptoms resolve on their own and within a few days (though I imagine this is stressful and concerning all the same). Any new updates? I'm glad you have a supportive doctor! With your son, did antibiotics alone solve his symptoms?
  21. Detox diet - Blogging our journey

    It started off mild like most do and then progressed but then it waxed and waned for a couple years. We did just the opposite of what you should do. We made a big issue of it and frequently told him to stop. We really had NO idea what we were doing in the beginning. We're taking the opposite approach with my daughter and so far so good. Just keeping it chill. Like yeah, sorry honey. No ketchup for a few days. Here's something else. We don't really talk about it much so as to limit her concern about it. Keeping it light is very important, in my opinion. You don't want to stress out your kids about this. It only serves to make it worse. Just namaste.
  22. Detox diet - Blogging our journey

    Kevin, Thank you for sharing, especially since it contains such personal details and I am sure evoked some emotions. All I can say is wow and unbelievable. I am so sorry you guys went through that....that is totally messed up and so very scary. We put our trust in medical professionals as the 'experts' and expect that they know what they are doing....especially when it comes to kids. I hope the first doctor you went to is no longer practicing. Regarding the doctor at the hospital, I can't believe he actually eye rolled at you.....gee, thanks for the help and support. I guess it helped put you on the path you ended up on so even though it was pretty crappy to see that it seems lime it helped in the end, strangely enough. Did your son's tics start of as.mild and then progress? Did they ebb and flow before you worked with Thea or were they consistently mild or consistently strong? My apologies....I hope you don't mind my many questions. Originally I was very much looking forward to a pediatric neurologist referral but admittedly the more I read the more I am tempering my expectations that they will likely tell me it's nothing and my son will grow out of it and to just ignore it. I guess we'll see. If my daughter is indeed starting to show some signs, then possibly they will do a bit more investigating but who knows. (As it turns out, she did not show any tics today, though has some energetic bursts that I am not sure what to make of....normal for her? Maybe. Or maybe not? Good ole guessing game.) I am really really hoping my naturopath gets us on the right path and can help rule things in or out. If not I am not sure what to do. Fingers crossed. Thanks again for your blog and your response. I really enjoyed reading it amd especially loved the ending.
  23. Ibuprofen alternative?

    DS is a teen so he just takes the capsules
  24. Detox diet - Blogging our journey

    I don't know if I ever wrote about this, but we started off following the same route as everyone else. Start off with the PCP who tries a few things then sends you over to a neurologist who tries a few things. That took several months. It was during the neurology step where things went really bad. We had the world's worst pediatric neurologist. She started him on Clonidine which turned him into a zombie for half the day. The other half of the day he was manic. She switched him from the pill to the patch so he was more even keeled and gave us no instructions on how to make the transition. Long story short- we nearly killed him. The neurologist's malpractice nearly killed him. He was in Children's Hospital in Boston for two days to stabilize him after what was ultimately an OD. It was and remains to this day the lowest point in our lives. We abandoned that doctor in favor of doctors from Children's but that was pretty short lived. I wasn't willing to continue drugging him. It was the Children's doctor that rolled his eyes at the prospect of addressing it through diet. I knew Thea from a former business relationship I had with her. I knew her practices were VERY VERY weird (I still think they're weird) but ultimately, I was willing to try ANYTHING at this point. We made our fist appointment with her and the rest is in the blog. Her screening methods are unorthodox but I just let her do her thing and followed along. None of her methods were scientific. I didn't care. I was done with medical science by that point. We were working on hope with this one. Sometimes hope leads to progress. In our case it worked. I'm sure it's not the same for everyone, though.
  25. Detox diet - Blogging our journey

    I am not sure if my reply format is going to come through okay, but just wanted to thank you for your response....it brought me to tears. This is all new and like everyone else that has gone through or is going through this, I am feeling scared, overwhelmed and worried and have a million questions and thoughts....especially if both of my kids are having tics. (My son alone was stressful enough.) When you were first trying to figure things out, where did you start, how did you end up with going to a nutritionist, what did you do to get started? Did you have a lot of trials and errors before coming across Thea? I feel like I want to a full screening to see what, if any vitamins and/or nutrients may be lacking or too high, if there is metal toxicity, etc. Did you run a gammut of tests and if so were they helpful? Thank you for your support....aside from my husband and doctor I haven't spoken with any friends or family about this and the support and advice is valuable. This is my post that I just started if you are interested....it is quite long. Sorry! Kevin, Thank you for writing this blog and letting us follow you through your journey. I am.so happy it worked out for you and your family. I just posted a very long post about my kids and admittedly I am worried. I am so eager to work with our naturopath (we don't meet for two more weeks) to try and figure this all out but I feel like I don't know where to start. Your post has been inspiring and has made me feel less alone and optimistic. Thank you.
  26. Anybody? I was hoping at least for a supportive virtual hug.
  27. Detox diet - Blogging our journey

    It's very scary the first time around. I feel your struggle. After 5 years tic-free, it was also kind of scary to recognize that my daughter had started experiencing tics. But then we realized that we know what to do. So far it's been manageable. Hopefully it stays that way. Doctors may tell you that these things are only treatable with medications. For us, that was just not true. The neuro even rolled his eyes when I told him I was seeing a nutritionist rather than treating it medically. They have their schools of thought and not all of them are based in reality. You're taking the right path. Good luck!
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