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  3. Thank you so much Sheila. I really really appreciate your response!! I am focusing on a super clean diet too and hoping it clears. He sometimes takes Claritin for outdoor allergies so will add to his morning routine for the antihistamine properties. Thank you!!!
  4. Hi MLee, So sorry to read about your setback. You should be able to get back to where you were soon. I understand food reactions can sometimes take 4 weeks to clear, but no doubt there's no hard and fast rules, so hang in there. Have you tried giving your son an antihistamine to see if it helps? If you do, please let us know. Also, some doctors recommend drinking baking soda (or trisalts) in water to help food reactions. Trisalts are on amazon--not expensive. Now that the initial period has passed I'm not sure how much effect it would have, but it is worth a try. Because he had avoided eggs for so long and then had a significant repeated exposure, the reaction is not unexpected -- though I know it's super discouraging. That said, I don't blame you for trying!! Scrambled eggs are so convenient--plus now you know what the limits are for sure. Please let us know how you make out. Will be thinking about you both!
  5. My child has been GF /DF and egg free for 2 years due to IgG food intolerances. This kept tics very mild. Really only had a small breathing tic. I didn’t do probiotics either as in the past, it caused increases. About 2-3 weeks ago we decided to let our child try eggs again. WE felt they were doing well . So over the course of 4-5 days many scrambled eggs were given. In the past if our child ate one of the intolerant foods it was 1x and it took about 3 days to clear. now i feel with the eggs we have put ourselves back to square 1. It has been 2-3 weeks and the grimace tic that came about after the eggs is still there. I am so upset with myself for cooking eggs. Plus I then tried a probiotic which was a mistake. is it about 6 weeks for foods to clear? has anybody done this and been able to reset back to where you were. I’m so so sad. We are doing Epsom salt baths at night to aid in detoxing.
  6. He is! Thank you for asking. We did a steroid burst for 6 days and he said the intrusive thoughts went away or were so minor that he could deal with them easily. Here’s hoping it lasts!
  7. Cmac, is your son doing better? Did he go back on antibiotics? I hope he is doing better :).
  8. Hi We have used them for general gut health, but not directly for tics. They seemed a bit irritating for the Crohn's Disease that my son also dealt with and so we stopped them as supplements and instead used enzyme righ food like papaya etc
  9. Thank you again for your response! Such a great way to describe the situation and get the point across and I will make note of the lending terms when I explain this to family. We are very fortunate to have pediatric neurologists who have studied with Dr Russell Dale in Australia that now work at our childrens hospital and have a particular interest in PANDAS/PANS, our gp has specifically requested us to see them. I have another appointment with our gp tomorrow so hopefully he can speed things up. Making note of the tourettes turf! IVIG has been suggested for us in the past and I am hesitant, I guess it's confirming this is a real thing and that hits hard
  10. Ah wisdom GIVER. Thank you for this response. I am myself trying to get tested for MCAS so this is not new to me She has a great appetite, we are very lucky this hasn't changed much during flares though the pickier side comes out we don't put much attention to that. She is RIDICULOUSLY hard to get any supplements/medication in but I will grab some antihistamine and see if it changes anything next time she complains.
  11. How did you find that there's a mitochondrial deficiency? Are there valid commercial tests? I have heard more people mention this as a cause of fatigue or result of mold, abx or such, but so far nobody suggested getting my kid tested. Naively I'd always assumed that it's often local, not systemic -- that there could be deficiencies, say in the brain or gut, that wouldn't show up on a blood test.
  12. Treat it as a real symptom unless proven otherwise -- a response to something biological within the skin. How to test? Try a couple of adequately high doses of an old antihistamine like Diphenhydramine (Benadryl). (in the AM, since kids often get more alert rather than more sleepy). If that works and and you prefer you can later switch to natural antihistamines, but the Benadryl is a strong H1 blocker, so if the itching gets better within an hour or two, you have your answer. My son developed a variant of allergic response called mast cell activation syndrome (MCAS) as part of his PANS/AE. When he's in a flare those symptoms flare as well, for him including gastroparesis (rapid satiety / nausea, due to the mast cell degranulation response to eating). Relatives thought he had developed anorexia as a response to the lack of control he had. Hah! The moral of the story is treat symptoms as real. As far as liver, I'm all for supporting the liver; it's got a really essential job. However a liver impaired enough to cause constant all-over itching should have other signs -- like jaundice (yellowing of eyes or skin), and/or an MD could feel the liver be enlarged. (I'm not an MD - so this is info, and encouragement to check out the itching and liver qs by talking to her MD).
  13. I spent a couple of months trying to push my teen to school because the experts Dx'd "school avoidance due to anxiety". They provided extra supports, but pushed me to take him even when he had a mild infection and a flare due to that. Worst idea anyone had. It was torture for him, torture for me. Not only did it cause his brain to be even more in fight and flight, it made him (understandably) less trusting that I'm "on his side". If she's worse the days following a stressor, even if she "held it in", it means that she had to borrow emotional energy from the future when she was scraping bottom, at ruthless "payday lender" rates. (My son thinks of it as 2:1 or 3:1 conversion when borrowing from tomorrow,;4:1 or even more if he has to dig even deeper and borrow from the succeeding days). So he wound up going to school for a part day one day, and then was absolutely wiped out for 2-3 days after. Trust your gut. I didn't initially -- thanks to well-meaning extended family, teachers and misguided psychiatrist. But think about it this way: Do you think any kid likes being anxious, irritable, out of control, with folks not understanding you? With others coaxing, commanding, maybe making fun of you? Or threatening "consequences"? If she could be resilient and her normal self, she absolutely would be. Try to remember when you have the "sickness behaviors" of influenza or mono -- malaise, irritability, fatigue, being non-sociable, low mood, no motivation. Are you being manipulative then? These "sickness behaviors" are hard-wired. You're miserable due to inflammatory cytokines from a primitive immune reaction in your body and brain, designed to get you to stay in bed, do nothing, so your body can heal. What I had to learn with my kid is that the severity of his flare had no relationship to how severe the cold symptoms were! In fact I remember remarking that soon after his onset, the colds were shorter, more minor than before. My understanding is that the immune response had gotten derailed -- so instead of making the type of inflammatory cytokines that cause a runny nose, his body was busy making the ones that crossed into his brain and made his brain flare. You are providing an absolutely necessary haven in the storm. She doesn't want to be in the storm. And certainly not in a relative's home while she's in the storm. Tell your friends if they want to help, you'd love their help -- but in ways that don't add stress to her brain. Examples: could you send them your grocery list? a list of herbal supplements to track down and get, send a link to a recipe that would make some (frozen) comfort meals for your family, for a bad day. Having a friend come do your laundry, or help fold laundry with you, or garden or whaterver, could be wonderful -- as long as you (and your daughter) knew they wouldn't judge your daughter -- or your parenting. (BTW, I now have a friend like that living with me, and it's so freeing, so wonderful for all of us. How does she know not to judge? Well, she grew up with similar judgment, from family and then husband. She never had any clue what was wrong but "laziness, anxiety", and MDs chalked up all symptoms to anxiety/depression (so easy). She learned to hide it super well due to all this awful judgment -- it's only after she moved in with me that I realized she had these waves of fatigue, brain fog, sweating, hard breathing -- and that they could start suddenly, after bending or reaching, or gluten. She never remembered what triggered it -- due to the wave of brain fog, anxiety and embarrassment (duh). Now we're a good support for one another, together figuring out her illness and my son's.) Good luck! You can always find understanding folks here! PS. BTW, for my kid, steroids, IVIG is what helped my kid most -- and then treatment for MCAS. Had we had good treatment early, good antibiotics against strep or sinus infections treatment might have been enough. Or, getting him away from mold within our home (sigh). But he never created antibodies against strep, and the mold was within our walls, and I was the only one who ever smelled it. PPS. At least in NZ you don't have to worry about COVID-19, unlike our Trump-forsaken-country, now at even higher COVID-19 rates than in spring. PPPS. Neurologists often don't get AE/PANS; there are a few influential neurologists who for the last 20 years really resented this intrusion into "their turf" of Tourette's. So if you're told that it's just tics, OCD, or manipulation, don't be discouraged -- simply don't believe them.
  14. Has anybody found success with tic reduction from broad spectrum digestive enzymes? If so, what did you use, and how is your child doing? Thank you!
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  16. As in a family member or otherwise? I have had family offer to take my daughter when she's sick so I can go to work etc, but most of the time she doesn't want to go anywhere. If made to she holds it in and her flare is 10x worse the second she gets home and through the next days, also giving them the impression she's being 'naughty' or manipulating me. Providing a 'safe place' with me or 'giving in' to her demands. My gut says I'm providing a safe place for her very overwhelmed brain but I'm getting a few other comments from family which have me second guessing. How are you guys dealing with this? On a wait list for our neurologist..
  17. Thank you, yes it is a magnesium citrate supplement with 100 mg of magnesium citrate per gummy. Awesome suggestion on the baths! I am going to read your suggestions. From what I have observed, he tics more on sugar and boredom. He doesnt do it at all when he is engaged and stay tic free for hours.
  18. Hi there Welcome to the forum What type of magnesium supplement? Some forms eg magnesium citrate can have a laxative effect. Also what dose is he getting? Magnesium taurate is generally well tolerated, and we found Epsom Salts (magnesium sulfate) baths to be an excellent tic calmer (2 cups Epsom Salts in tub of warm water, soak 15-20 min) My son always ticced more on iron so we rather got his iron in via foods rather than supplements. Chelated zinc is also best from our experience. I have a link in my profile about me section on what we used over the years to help my son. Do also take a look at the main website for more info, as often finding what is actually triggering the tics is the biggest step to calming them! https://latitudes.org Here's the book se on finding what may trigger the tics https://latitudes.org/store/tourette-syndrome-triggers-book/ I am guessing the other book you refer to is https://latitudes.org/store/natural-treatments-for-tics-and-tourette-syndrome-book/
  19. Hi, My 4.5 year old son has suddenly developed tics. We dont have any family history as far as I know, and it is breaking my heart. It first started with nose itching and now that is gone and he either claps or runs around and claps. We have seen numerous neurologists and the diagnosis has been the same- transient tics. We had an EEG done and it was normal. The only advice I got from most is to wait and see. That is not my style. I have started reading the book on how to deal with tics in a natural way, started a 1 month electronics fast and now working on reducing sugar. My friend, who is a pediatric neurologist also recommended giving him adult dose of fish oil, zinc supplement, iron supplement and magnesium. I bought a gluten free, sugar free magnesium supplement but it is making his stool runny. Would appreciate any advice you have on magnesium supplements and overall insights. Also, we started him on a course of homeopathic medicine, about a month prior to tics, I was wondering if that is somehow was a trigger or tics could be a side effect of the medcine? Thank you, Restless mama.
  20. Welcome to the forum KSan As your daughter is now 8yo. you may be able to give her smaller doses of regular supplements that don't contain sugar, or other bad fillers? There are companies here in the USA that make sugar free pure supplements and many of those are also available from the companies' websites or on Amazon, iHerb.com and others A good way to increase magnesium is Epsom Salts(Magnesium Sulfate) baths - we use 2 cups in a tub of warm water with a 15-20 minute soak. Plain Kefir and high quality yoghurts are excellent natural probiotics. Sheila Rogers has another book you may find helpful as well now that you have her Natural Treatments for Tics and Tourette - it is "Stop Your Tics By Learning What Triggers Them" There is also a lot of very good information on the main website here: https://latitudes.org/ I hope this helps a bit. Please let us know how things are going.
  21. Hi, We are based in India and my daughter was 4 years when her tics first appeared. At that time as parents we were really worried, but upon reading the stories of other families in the book 'Natural Treatments for Tics & Tourette's' we followed and avoided cheese and all products containing sugar or its derivatives. We even stopped multivitamin syrups as it contained fructose. Soon our daughter was tic free, and whenever any sugary food was introduced in her diet for more than five days continuously, the tics appeared again. Her tics were of blinking of the eyes, shoulder and neck shrugging. Upon stopping the sugary foods and cheese it would take atleast a couple of weeks for the tics to disappear. During time of her tics she could get very angry. She was not reacting negatively to milk or wheat, so we did not stop them. We avoided the problem foods and she was fine. But towards the end of April 2020, she is eight years now, her tics appeared again and they are more troublesome as these are of hands, legs and bangs the back of her head while lying down on the bed. We had given her mangoes for a couple of weeks, and upon realizing it has high sugar content we stopped it. Also through the months of April and May she had online school at home due to the corona virus lockdown. We noticed she was ticking a lot when in front of the computer. Now it is the end of June, we do not let her watch much TV but the same tics are still there. We have stopped milk & wheat too since two weeks, but not much difference. We have noted that she tics more at lunch and dinner time and post that. After dinner if she watches TV for even 10 minutes she tics a lot and cannot sit in one place and has to run around or jump for 5 to 10 minutes. Otherwise through the day she tics only a few times. This is the longest period with tics for her, and her hand banging is dangerous and has us worried. I was reading the book and online posts that multi-vitamins, magnesium supplements and probiotics help a lot. But I am finding it difficult to find them for children without fructose or other forms of added sugar. Would really appreciate any advice on this.
  22. Thank you! Gosh I'm waiting for a miracle for our sleep, my 5 year old pans kid has never slept more than a few hours at a time and never in her own bed, going to hunt down that dawn huebner.
  23. This may not be of much help. SSRI’s for some of (pans/pandas) kids have the opposite effect. Your going to need the advice and supervision of professionals that understand how to administer and closely monitor the treatment. Our kids all react uniquely and are at different stages of need. Our DD went through all of the SSRI’s and the doctor quit because nothing worked or had effects he wasn’t prepared for. His conclusion, it’s pathological and needs a different kind of expert.
  24. Internet. They have more savvy with technology than we think they do. Exposure is a stimulate., but they need a physical release. If Sports is available it can help. His mind needs to be active. Replace the behavior with something else to change the urges.
  25. How’s your mitochondrial cells? When we discovered mitochondrial deficiency, support made a big difference. My daughters immune system is sensitive to big changes and easily overreacts. If we use something long term her immune system start to reacts. We have to write a daily journal and track everything. History helps big time.
  26. Support is crucial I believe. For years I only went on FB for the Pandas support group. And you can even use an alias or just part of your name if you prefer to be anonymous. That way you can get the support you need without the hassle of being “found” by old friends etc.
  27. Do you have central Air? If so you can use low level micron filters. I would suggest adding uv light at the filter. I use a portable lamp in the bathrooms. Lights are cheap.
  28. I just wanted to share some books that really helped my child on their journey with PANS. These were sooo helpful in addressing behaviors: "What to Do When Your Brain Gets Stuck, a Kid's Guide to Overcoming OCD," by Dawn Huebner. "The OCD Workbook for Kids," by Anthony Puliafico "What to Do When You Dread Your Bed," by Dawn Heubner (This seemed to work miraculously) "What to Do When Your Temper Flares" by Dawn Heubner These were very helpful in gaining awareness about what PANDAS/PANS really is: "PANS/PANDAS Strength-Hope-Understanding," by Suzanne Gushansky (for the child) "A Parents' Guide to PANDAS, PANS, and Related Neuroimmune Disorders," by Doran et al "Childhood Interrupted; a Complete Guide to PANDAS and PANS," by Beth Maloney * very informative "Pans, Cans, and Automobiles," By Jamie Candelaria Greene I hope these can help your family.
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