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  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. 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
  4. 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
  5. 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
  6. 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
  7. 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
  8. 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
  9. 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
  10. MLee

    Vitamin B6

    Tropea22, I may look into this as well. Thank you Chemar!
    1 point
  11. 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
  12. 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
  13. 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
  14. Thanks Mama3 for replying my post. I cried almost every night the first week, I regained strength after reading the posts from this forum. I know I’m not alone in this long battle. {{Hugs}}
    1 point
  15. Just curious how many of our PANDAS kids are affected by swimming in chlorinated pools. Last year when my son was at his worst (we didn’t yet know what was going on) we noticed a dramatic worsening of his tics as soon as he started swimming. We then didn’t try having him swim again until this weekend, 7 months after that last time (he has since been treated for his PANDAS with antibiotics). We were terrified his tics would start again, but this time, thankfully, there was no negative effect. With camp around the corner, I do worry about him swimming every day, though. I ask
    1 point
  16. 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
  17. wisdom_seeker

    Pans and mold

    Oh do I understand the stuck and pissed, and $$$ stressed and tired. If you want to talk over what you've already done and seen, and brainstorm, give me a call. I'm not an environmental hygienist, but I've unfortunately dealt with hidden sources. And as the CIH I work with repeatedly told me, "an outlet or hairline crack in the drywall is like a highway" and the killer thing is that "every time you change air pressure, say by closing a door, it forces mold fragments & mycotoxins out through those gaps". So if I can help with the detective work, I will. Where are you located
    1 point
  18. Has anyone done CellTrend testing for auto-antibodies? This test was developed for POTS and ME/CFS, but surprisingly my son tested high positive for over half the 11 auto-antibodies in the panel. I'm treating this as very meaningful for likely AE. But would our insurance agree and pay for IVIG or PEX, based on a research test from Germany? Still it's enough for us to want to get serious about getting evidence to justify IVIG or PEX (both to us, DS20 himself, and insurance companies). However, years ago we'd spent $$$ for the Cunningham panel and insurance completely discou
    1 point
  19. Cmac

    Length on Antibiotics

    Pennmom—yes, his intrusive thoughts were the last thing to go. He had hallucinations (he saw werewolves all over the place), ocd—lots and lots of rituals like running in front of the back door a certain number of times before he could enter the house, extreme separation anxiety and extreme anxiety in general, and emotional lability. Those symptoms began to ease up gradually between 3-7 months from the time of the first onset in August 2018. The hallucinations and accompanying hand movements were the first clue that something was terribly wrong in August 2018. Looking back it seemed like t
    1 point
  20. when i was reading your post, i thought it was written by me!!! My child flipped on magnesium but flips on EVERYTHING we have tried. It turns out that she went crazy on everything because she had severe yeast/fungal issues. She is now on Amphoceterin and doing well and also tolerating more supplements/vitamins. It was a hellish 13 years and now we are finally seeing some results. Also possitve for lyme/bartonella. We treated her with the bactrim and mino. and she was a mess. Again, I think because yeast was out of control. Hope this helps.
    1 point
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