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  1. 1 point
    We have not gone through similar, so can't comment too directly, only on your statement "...apparently in true PANDAS cases it [OCD] accelerates anxiety and vice-versa?" Well, I would say that OCD, if it starts more slowly in a PANS/PANDAS child, is somewhat calming at first, when it is not otherwise debilitating or noticed by others too much, because there is some satisfaction derived from "repeating it right" when they finally get there. But when it grows much more significant later (or for any person with severe OCD) the sufferer fairly quickly becomes exasperated with how debilitating it is, and sometimes satisfaction is eluded, and so of course that creates plenty of anxiety. So I think your statement is fully true for those with very quick onset of PANS/PANDAS, and eventually true for all. If you can get and afford the ivig, the potential benefits probably outweigh the risks (in my mind).
  2. 1 point
    GAmom

    will Normal return?

    My son has similar behavioral issues. We tried different things, including the Ross Greene method. But, because of his age regression due to the PANS/PANDAS, "normal" techniques didn't work. We ended up doing an intensive CBT program a couple of years ago and now do weekly CBT therapy. He's improved alot. It's still ongoing.
  3. 1 point
    edsonr

    My Sons tics, sharing our story

    Hello I just wanted to share my story, and maybe it will help others. I'll try keep this focused and straight to the point. My son started his "noticeable" tics on Christmas eve 2017. Pediatrician said it's command and would go away, just not sure when. I started to get more and more concerned as frequency increased, at times it would be several times a minute. He had motor tics with his arms, then later shoulder shrugs, then neck turning, and facial tic (that we thought were just too much screen time). No vocal tics noticed. He had a bad diet being a bit picky, and would eat lots of candy, he would also get lots of tablet time. I had my share of sleepless nights thinking and worrying about him. I tipped off about the book "Natural Treatments for Tics and Tourettes..."..and that book, lifted my spirits, inspired me, gave me hope, and energized me to help my son. Here's what I implemented at home: (mind you, the night before I started making changes, he was sick with a fever and tic'ing restlessly) Bought magnesium gummies to give him Bought fish oil Cut the high fructose out of the diet started removing artificial flavors and colors cut down on screen time When he was sick for about a 8 day stretch, I started the plan above. He already hadn't been eating much since being sick, but we I started giving him magnesium supplement. He probably had magnesium supplement for about 6 days then he got better. We noticed immediate turnaround, for a good few days I didn't see 1 motor tic, which was going from several times a minute to maybe 1 all day. Just seeing it stop for 1 full day, confirmed to me that there is something we can do despite what the dr's say. We started to be more conciseness about what we feed our kids, and tried to get more nutrients in them. I had to explain to the both kids, that we all need to eat healthier, so we need to stop eating stuff that's bad for us. My son was all in, he always asks now if a certain food is healthy. About 2 months into being more healthy his motor tics were probably 90% gone, but he still had some facial tics. The crazy thing is even though he made great progress, just seeing a tic here and there could still sink my spirits. Thinking about his bad diet and him not being regular with his stool, got me thinking he may have leaky gut and that maybe he's not absorbing nutrients well. I know the battle may not be over yet, but I'm happy to report that he hasn't had a motor tic that i've seen in about 2 weeks, and the last week have not noticed many facial tics. This week he's also been more regular, going #2 every other day (previously it was 1-2 per week). What we're are currently doing: Supplements: Smarty Pants Multi (whch has omega 3) Smart Calm Magnesium gummies (they loooove, the taste of this one) Fiber gummy probiotic gummy Eating / Food: No High Fructose No Artificial Flavors No Artificial Colors Fruit / Veg smoothies Buy Organic when we can Cut down on fast food - there was a happy meal or 2 in the last 2 months Candy is not an everyday thing, special occasions and rewards Other: Cut down screen More board games Playing outside I still allow them to have candy here and there, but nothing like before. I just still want them to enjoy being a kid, so even at birthday parties, I'll let them splurge. I hope someone can takeaway something from my post, I know reading posts from others often lifted my spirits while I was going through some hard times with my childs tics. Feel free to ask me questions.....
  4. 1 point
    Hi, I've read several testimonies/blogs were essential oils cured PANS/PANDAS in children. Young Living Oils has the Raindrop technique with specific oils for autoimmune disorders. I reached out to PANDAS Hope for Healing twice last year and never got a response.
  5. 1 point
    lnn

    homeschooling/schoolwork and pandas

    Welcome to the forum and "welcome" to Pandas/Pans. I've unfortunately been at this for many years, first with my now recovered son and now with my daughter. I home schooled my daughter last year because her health was too precarious. Because it was only for one year and we always had the intention of returning to public school when she was able (for social reasons), our approach was probably different from yours. But I'll share what worked in case it helps. I think the biggest thing that was helpful was mindset. Like your daughter, mine went from being very capable to being very handicapped in what she could handle in terms of workload and abilities. There's a medical reason for this - inflammation in the brain creates what's called a cytokine storm. There are many inflammatory cytokines that become elevated, but one - CaM Kinase II - is essential for learning and memory - from Wikipedia: Ca2+ /calmodulin-dependent protein kinase II (CaM kinase II or CaMKII) is a serine/threonine-specific protein kinase that is regulated by the Ca2+ /calmodulin complex. CaMKII is involved in many signaling cascades and is thought to be an important mediator of learning and memory.[1] Misregulation of CaMKII is linked to Alzheimer’s disease, Angelman syndrome, and heart arrhythmia.[6 https://en.wikipedia.org/wiki/Ca2%2B/calmodulin-dependent_protein_kinase_II We had bad days and worse days. Some days, she was able to learn in a fairly typical manner and other days, it was like teaching someone who had suffered a brain injury like a stroke or car accident. So the most important thing I did each day was to feel out where she was at, what she was capable of that day (and I also had to realize that every day might put us at a different starting place, and sometimes she'd have different capabilities throughout the day). Re-setting my expectations on the fly was essential. Otherwise, I'd expect too much, she'd stress over disappointing me and over her own sense of loss. Much like working with someone who's in rehab for a stroke - how frustrating it is to not be able to do things you've easily done for your whole life. So forget about what she used to be able to do. Forget about what her brother can do. These are, for now, false points of reference. Start each lesson by assessing where she is at that moment and work with that. Do not show your frustration or expect more than she can give. That just blames her for something that's not in her control. You wouldn't do that to someone in rehab. You can push the way a cheerleader might - "hey, do you think you can do one more problem? No? Ok, take a break, you did a good job." But don't push with the thought that you can somehow push her back into being her old self (spoken from experience). My daughter (12) reads at a 12th grade level. But there were many times she couldn't focus on the words on the page. But she could listen. So I'd read her social studies book to her while she doodled (drawing helped her stay focused, ironically, because it's something that relaxes her and it distracted her from her anxiety). Then she'd answer questions about what I'd just read to her. Sometimes she could write the answers herself, sometimes I could see from her horrible handwriting that I'd have to scribe what she verbally told me. We just had to be flexible. We did a lot of verbal discussions. We broke lessons up into very small chunks - sometimes as little as 5 minutes. Then we'd re-group 15 minutes later, or an hour later, or a day later. I had to let go of my scheduling, my goals, and just listen to her body and support her. The old her was temporarily gone. I had to teach the person who showed up that day and just help that person do her best for that day. Not easy for a Type A mom. But it's what she needed. She is back in school this year, on a modified school day, with many absences (but for social reasons, she is adamant about being back in public). We often find ourselves having to do do school work at home to make up for missed days, and our approach is to do things in very small chunks. When she's feeling well, she takes pride in doing things independently. When she's in a bad place, I sit with her and coach her every step of the way. It's very much a teaching-as-if-you're-a-rehab-therapist approach. The amazing thing is that once the body heals, the old child comes back. You don't need to worry about her getting lazy or developing bad habits. No one wants to get back to her old self more than she does. When she heals, she will return to the independent, curious child she's been.
  6. 1 point
    Hi Claire, although we did food sensitivity testing when my son was young (4yo) and again after his TS diagnosis(10yo) and also specific food elimination when we were detoxing from candida(yeast), my son does NOT have any food allergies or sensitivities, other than to artificial ingredients. He showed only a slight reactivity to peanuts, but now seems to tolerate them just fine. He does however react big time to artificial sweeteners, colors, flavors, high fructose corn syrup, preservatives and MSG and so we totally avoid these.


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