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Showing content with the highest reputation since 05/14/2020 in Posts

  1. JessL

    I’m angry

    Ugh. Big hugs. I'm so sorry, I really feel you. I was where you are just last month, emailing and calling our doctor in tears asking if this is how our lives will be forever now. I still wake at all hours of the night with a hundred questions and thoughts etc, waiting for the night time wake ups of screaming etc. It feels neverending. PTSD for parents with PANS/PANDAS is SO real. The caregivers need help too. This is a lonely wild ride. If you're able to find a support group I know a lot of parents find just venting to people who understand therapeutic. Xxo
    3 points
  2. I completely understand with needing to hear from others. We tried so many supplements over the years. We also did neurofeedback (muscle testing) and cognitive behaviour therapy with a child psychologist. Looking back the most important things that helped were - clean diet (real food not processed) with low oxalate foods, tonsil and adenoid removal, and learning how to "fight" his ocd and "worry brain" with common sense techniques that were given to us by the psychologist. Those techniques continue to be useful to this day, but only when he's not in a flare. When in flare it's too hard - his b
    2 points
  3. We started a gluten free, dairy free, soy free, egg free, sugar free, no artificial flavours /colours diet on February 20 of this year. At this point my dd had been ticcing for 3 to 4 weeks. We had a couple of her worst days AFTER her diet changes. It was disheartening to say the least But we persevered and her tics are now 99% gone. We’ve since reintroduced eggs and I’ll be trying soy next. She will always be gluten free however. I should also add nightmares and stomach pains and joint pains are also gone. Don’t give up!
    1 point
  4. One week into some mold TX and very beginning of DNRS utilization. Daughter with tics is improving. So soon to really tell, but we are treating 5 of us for mold symptoms (e.g. I had extremely itchy eyes and headaches, fatigue). All are seeing improvements in moods and fatigue levels, except for husband-but he got his 2nd covid vaccine so not feeling great was expected.
    1 point
  5. Chemar

    Tinted lenses

    There is also a lot of good info on this on the Irlen website https://irlen.com/who-we-help/
    1 point
  6. Hi, We are doing ok, we still have 3-4 tics with wax and wane. In the long run we think we are in a descending trend. Please do not consider me an authority. I am just an other worried parent. Unfortunately there are way too many unknowns about tic (and related) disorders. There are very few researches that focus on underlaying reason for tics and why some get better and others don't. Luckily there are now, some researches on the topic like EMTICS and some other I pointed out in other posts. I try to stick with evidence based treatment strategies but this does not mean
    1 point
  7. Hi there. I apologize the the extended amount of time it took me to reply and post again. I was in a sort of denial and was trying to avoid dealing with the emotions that came with my daughter’s tics. Here is a run down of our story and what we’ve tried. Chiropractor: helped with her posture and overall wellness but did nothing for her tics Grapefruit seed extract: 1 drop in water once a day when I noticed her tics were extreme. It appeared to have helped but I’m not 100% sure if it’s the grapefruit or the foods we have eliminated. Neurologist: recommended she be put on a m
    1 point
  8. I personally think that hyper activity is an other form of a ‘tic’ , an urge to do something, so might be considered part of the spectrum. That’s my personal opinion yet prof I chatted on the topic agreed the view. We had the same issue of tics before sleeping for a long while, almost a year. Make sure you got all the help you can to cope with the situation. i am positive that you will be in a lot better situation in short time.
    1 point
  9. Hi greekdude Sorry you have not had a reply yet. I know more about Tourette Syndrome than PANDAS, so can't be of help other than to suggest you look at the pinned threads on this forum as there is a wealth of information there. Hopefully someone with PANDAS knowledge will be by soon to offer you some help
    1 point
  10. Hi! I’m happy to see your comment as well, it’s great to find people who can do the same thing as me but especially people who are doing it in 2020 :)) I agree; my head often feels as though it can’t stop thinking, both during the day and at night. Like you said, everyone thinks it’s really cool, and it is, but it can get incredibly frustrating and very tiring. I’m glad to hear that you also rearrange sentences and words to make them into a ‘good’ length; it makes me feel a bit less weird and less isolated! And it’s really interesting how you count the pen strokes in letters. I’ve n
    1 point
  11. Hi I have been asked to post our treatment protocol a number of times here and by emails so I have finally put it together in what I hope is a simple summary for anyone who needs more info on it. Although I have a background in Medical Research, with a postgrad degree in Physiology I am not a physician...this is the program that worked for my son, and and I must stress that we were at all times guided by a team of knowledgeable doctors. I urge everyone to work with a qualified physician! PLEASE NOTE! this post was originally written in 2004, and so has been updated with current information
    1 point
  12. Maya

    PANS Testing and Bloodwork

    I am working on getting my Insurance to approve a visit to a clinic in Tuscon. Doctors don't believe Strep is to blame because his titers are low. They feel it's depression 🙄 Thank you for the blessing❤️
    1 point
  13. 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.
    1 point
  14. MLee

    Vitamin B6

    Tropea22, I may look into this as well. Thank you Chemar!
    1 point
  15. Here comes an other update. I started following tics on an excellent sheet that helps me figure out progress of tics and when they emerge and when they get out of the picture. At the very first 2 months after 'new' noticeable tics kicked in we had some ups and downs however they never got very bad or to a point that would effect her social life. At the 8th week a steady decline started and leg/arm jerking slowly decreased in intensity and frequency and now gone. However during the course a few more tics came and go. We had some head nodding that was very infrequent for 5 weeks , we
    1 point
  16. tropea22

    Vitamin B6

    Hi MLee, I was never able to find it but, thank you to Chemar. I will search for Carlson Labs.
    1 point
  17. Just to add - I would definitely recommend the T & A removal. I believe it made a big difference both in ridding him of an embedded infection and preventing further ones.
    1 point
  18. kimballot

    New Hope New Year

    Hello fellow PANS/ PANDAS parents. Some old-time folks may recognize my name. Others are likely unaware of the struggles my family has endured for the last decade. I found this forum in 2010 after a H1N1 hit our family in the fall of 2009 and my son was hit with yet another PANS exacerbation. He was 12 years old at the time and had struggled with chronic sinusitis and Pans for much of his life, though the preceding 5 years had been relatively quiet as a result of a 2007 tonsillectomy. The H1N1 set off a major immune response that led us to Dr. B in CT who found a large muscle in his et
    1 point
  19. He is great now, besides going gluten free and watching his diet, he is tic free. Please pray and believe it will pass by.
    1 point
  20. wisdom_seeker

    Pans and mold

    Oh do I understand the stuck and pissed, and $$$ stressed and tired. If you want to talk over what you've already done and seen, and brainstorm, give me a call. I'm not an environmental hygienist, but I've unfortunately dealt with hidden sources. And as the CIH I work with repeatedly told me, "an outlet or hairline crack in the drywall is like a highway" and the killer thing is that "every time you change air pressure, say by closing a door, it forces mold fragments & mycotoxins out through those gaps". So if I can help with the detective work, I will. Where are you located
    1 point
  21. prestopony

    Supplements

    I'm sorry you're having trouble getting a doc to help, it's so frustrating. This board was so helpful to me. Like many kids, my 15 year old daughter was diagnosed with PANS after many years of suffering. She is on a lot of supplements, so it's hard to know which ones are really successful! We use: Enhansa for inflammation - follow the guidelines for slow introduction, we noticed a big herx as is said might happen. For anxiety, we use CDB oil and Lithium oratate. Her 23 and me showed folate issues, so she takes Methyl Assist. Magnesium Citrate along with Buffered Vitam
    1 point
  22. 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
    1 point
  23. Caryn

    Is it possible...

    It took us almost two years after we started my son's strict diet before the tics finally went away completely. Hang in there. Don't stop the diet. If he is reacting to corn that strongly then you know you are on to something. You have to remember that antibody levels rise and fall SLOWLY. So it could be that your son has very high anti corn antibodies right now and so his tolerance is non-existent. It could take 6 months to two years to get those antibody levels down to the normal range. We have seen this with our son's gluten antibodies and the stool testing we do annually. After two years h
    1 point
  24. sf_mom

    Herxheimer Reaction

    I thought this important enough to post. In our healing process we have definitely experienced 'flairs' or flipping of the pages..... While I attribute some of this to new exposures, I also attribute some to Herxheimer's Reaction. Over the last 7 months we have definitely seen the saw tooth recovery with a movement up in baseline of symptoms with less and less of reaction to exposures. It has been a long a tedious recovery BUT because our son's primary presentation was TICS we are able to see a very physical response that is easier to measure than emotional. The body eliminates toxins b
    1 point
  25. Our son is a couple months from 11 now. He started the famous eye blinking at 8 and did the body jerks (arms, legs and some head) a couple months later. They waxed and waned for about 4 months then stopped. He still has some facial tics, mostly some eye blinking, then nose twitching and eye brow furrowing but the jerks never came back. Even now his tics are so minor no one but me seems to notice. He goes for months with nothing, the last week he has had some eye brow furrowing, but he has been playing games on his Game Boy and this seems to be a problem. This has been a long journey fo
    1 point
  26. Nan

    These Treatments Helped us!

    My daughter's tics (at that time I didn't know they were tics) started soon after she turned 5. It started as a throat clearing tic which we thought was due to seasonal allergies and kept treating her for it. The tics did not improve at all and we were really confused as to why none of the allergy meds are helping her. A year went by with her throat clearing tics still present. A few months ago, her throat clearing tics stopped completely and were replaced by eye blinking tics. That is when I stumbled upon this website and realized that what she has been having all along were tics. Th
    1 point
  27. Shortly after my son turned 6, he had a sudden & acute head tic, then later with other motor & vocal tics. We have done the following treatments: acunpuncture, chiropractic, CST, Chinese medicine, ND with supplements, NAET & Bioset. My son's tics did calm down after about 2 acunpuncture sessions, but the needles caused him much stress & anxiety, so we abandon this treatment plan. My son had modest improvement with chiropractic. NAET has eliminated his asthma and chronic bloody nose. It also helped some with his environmental allergies. CST has been very
    1 point
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