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  4. I’m just seeing this. I’m a night owl most nights too as my kids harm thoughts keep me up. So I’m in the Houston area. Frustrated to say the least. Cholestramine hasn’t done much. Now homeschooling and even I myself am having bad dreams of her hurting herself .. because it’s what I fear. I’m mad because bobs keeps denying IVIG. Any help would be great.
  5. Thank you guys for responding!!! Daniel is doing so much better than when all this started. I did some detoxing, a bit of diet change and added many supplements I saw mentioned on here. He is down to only one tic ( throat clearing) and does that only a few times a day. Nobody would ever guess he is ticcing unless they know I am so grateful for the amount of support and information on here. I know I am not alone.
  6. Thank you for adding your feedback, ahmoy44. And it's good to know you had positive results with adjusting diet related to gluten, eggs and refined sugar. It's always helpful for members to receive encouragement on how lifestyle changes can help some people so they can try for themselves. How are things going, Sunflower78? Please let us know if there is any specific info we can provide that might be useful.
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  8. 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? Lucy 408-464-3255 PS. I'm a night owl on PST, in the SF Bay Area.
  9. TLDR: What auto-antibodies have you seen in PANS kids that insurance didn't dismiss? We'd like a list of antibody tests or other evidence that can help get PEX authorized for a non-PANDAS kid. Details: My DS20 is pretty disabled due to MCAS and PANS symptoms, and his MD really wants to reboot his immune system due to his very high levels of auto-antibodies and dysregulated immune system. Because of his persistent high mycotoxins and persistently high IgEs, treatment with PEX --> IVIG + Rituximab makes more sense than IVIG -> Rituximab to us and at least some of his MDs. The problem is how to demonstrate medical necessity to insurance, since he's not at death's door, and doesn't have PANDAS. The autoantibodies found so far (some at 4-14x upper threshold) aren't the old "standard" ones, and he has very high IgE (1200-2300), so his MDs are guessing he's got other autoantibodies as well. I'd like to get him thoroughly tested for auto-antibodies before we reduce his IgGs more with steroids or invalidate tests by doing IVIG. So what tests have you found useful? Asking for sympathy / blowing off steam: His MDs can't argue for PEX under the PANDAS dx, for even when Cam-K II was seriously high at ~184, the Cunningham strep-specific Aabs were BELOW normal threshold, and his ASOs have always been 0. So Kiddo has either never had strep or he doesn't react. And silly me -- I missed the 2nd "easiest" time to justify PEX a year ago when he had lost 15% of body weight due to gastroparesis/MCAS (after the last major mold exposure we didn't know about). But at that point I wasn't thinking about PEX -- his anxiety was sky-high, he couldn't think, was getting scolded by his Pedi for not taking weight gain as a serious enough goal (he was trying!), he was given antipsychotics by a neurologist, and was threatened with a "behavioral eating disorders program". I wasn't forcing him too eat, so he never wound up in the ER. Instead his allergist gave him a tentative MCAS dx, nobody was talking autoimmunity as the mechanism, and so I jumped at the mast-cell stabilizer compounded drug -- instead of first investigating why he had mast cell activation, and making sure he threw up and had an ER visit to document the severity 🙄.). Or maybe he needs to stop taking the non-FDA-approved med for gastroparesis, and lose 10% of his body weight again -- shouldn't take too long 🙃(I'm kidding, but definitely frustrated by the catch-22. )
  10. Hi SuzyQ It does seem BonTech is no longer in business I keep a post (actually thread lol) on my profile page about me section for anyone wanting to look at the protocol we used to help my son. He is in his 30s now and doing just fine. Still keeps up with some of the supplements that he has always found most useful but doesn't take nearly as many as he used to have to! He also maintains as clean a diet and environment as possible, and avoiding the things he knows trigger him.
  11. Hi Chemar, I've read through other posts where you described your son's history and your supplement program for him. My 18-year-old daughter has very similar experience as him. She has Tourettic OCD and just began her freshman year at college. Her symptoms spiked up to the point of extreme difficulty even with all the accommodations. She has been doing fine without any medication for her OCD or Bontech supplements for the last 2.5 years. And I found out that Bontech is no longer in business or production. Is it possible for you to share your son’s program with me with the approximate dosage given she weighs about 115lbs? She currently goes to chiropractor for adjustments from misalignment due to neck and should tics. She avoids msg as it spikes up her tics tremendously. She has all the symptoms of OCD, low serotonin and GABA, and high dopamine and glutamate. Thanks for any guidance you may have!
  12. Sunflower78, Just wanted to let you know you’re not alone. I’m a mum in the uk to a 9 year old who’s been ticcing since she was 5. They do wax and wane like everyone says but I can hand on heart say that we saw the least amount of tics once we removed certain things from her diet (mainly gluten but also eggs and refined sugar) so I do think the answer in helping our kids lies within identifying triggers. She’s not 100% tic free (and I don’t think she ever will be) but I’ll take a reduction any day.
  13. Thanks for the update mert. It is good to be able to follow someone’s Tic journey after some time has passed. I hope the measures you’ve put in place help with her tics. I can see with my own daughter that her emotions play a role in her tics so I’m trying my best to remain calm when I see a new one surface.
  14. I’m afraid I don’t have any experience with serrapeptase but didn’t want your post to go unanswered. we did us a bazooka on our daughter (TS) a couple of years ago and didn’t notice any increase in her tics (if that’s what you’re asking?) but to be fair, at that time we weren’t alive to the fact that she may have reacted to any chemicals so it’s not something we were looking for either. sorry I can’t be more help.
  15. We are a I’ll in the midst of finding the issue. Nothing visible but def something hiding. I’m pissed. Want to leave our house all together. We are broke and tired!!!! Thanks for the help
  16. I prefer to ask here when I try something new to check if anyone has had issues with it. Serrapeptase, the pill, have you used this? Or any other supplements? Or wart cream, like what you paint on warts to remove them. I appreciate it.
  17. 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 discounted that. So I'd like to know what other autoantibodies DS has, but I'd also like it to be meaningful to insurance companies. What have you found useful? Candidates I know are: Vibrant Wellness' Neural Zoomer Plus Moleculera labs' Cunningham Panel (much better for PANDAS than PANS) Cyrex Labs CellTrend' GmBH's CellTrend Mayo Clinic's ENS2 Labcorps Quest The only ones that are FDA-certified (?) and reimbursable in the US (as opposed to "research tests") are the last three -- the Mayo clinic's classical autoantibody panel (largely for cancer) and the very limited ones from Labcorps and Quest I care about getting info that's useful to us and to insurance companies. So if one of the first 4 was useful for anyone appealing for IVIG rejection, I'd love to hear that.
  18. Robin, I'm so surprised that there were no replies -- probably due to the holidays, because I know that we can't be the only ones who've dealt with mold. My sympathies go to you -- mold is such a pain to deal with, especially with a sick one and all the financial implications. We'd done a bunch of things over the three years since we discovered mold. And initially, despite all I knew, despite my love for my very ill DS, I made a variety of mistakes. What the best things to do are depends a lot on your specific situation -- do you know the source of the contamination? Do you have insurance that will cover some? What's contaminated? Just how bad is the contamination? How sick is your kid? Do you have some relatives/friends to stay with during remediation, etc. etc. A super-useful book is "Toxic" by Neil Nathan. With chapters on de-toxifying your body from mycotoxins (mold toxins). And a chapter (appendix?) by the incomparable John Banta, Certified Industrial Hygienist on cleaning. It's possible to read just the chapters you need up front though of course it's somewhat cumulative. It's become my bible. I'd do better to quote from there, but here are some initial guidelines, some of which I resisted initially. first do no harm. Meaning, avoid spreading the mold (don't open sealed boxes, don't open closed books, change your shoes & clothes when moving from contaminated to uncontaminated rooms (if any). But also, don't toss irreplaceable things like your grandmother's photographs and quilts. For such, if they're not wet, you can almost always stop any growth and set aside the question of if/how to restore till you have the time and emotional energy). If possible, get at least some consulting time from the inspector / mold remediation companies, certified industrial hygienists, etc. You may get some for free, some you may pay for, but it will save you mistakes. Before spending money on remediation (of the structure), make sure you have found ALL sources of water intrusion, both active (slow drip under the sink or from a leaky roof), and intermittent (say you get moisture in the attic only when the AC is on and a duct has condensation, or water coming through brick foundation, but only when the soil is saturated). Till you can move out minimize the exposure in your child(ren)'s bedroom. If your child's room is clean, keep it that way. If you have air-recirculating central heating, tape off the vent into your child's room to keep contaminated air out. Install a kid-safe room heater if needed. Maybe even Install a zippered doorway seal (we did. They're $20 from HD). Or a 2-overlapping plastic flaps system -- anything to reduce air flow into the child's room. Mold is pushed on air currents through tiny cracks whenever there are air pressure changes, like when the heater comes on or a door slams, so nothing is perfect, but Since mold settles, changing slippers just inside the room helps. If the child's room wasn't that clean, but another room is, move them. You can wipe down a wooden crib really carefully, and get a new crib mattress. Don't move a dirty mattress (or pillow) into a clean room though; air beds are much cheaper and nicer than they used to be, and have the advantage of never getting contaminated on the inside. Or at least cover the mattress with a bedbug-sealing zippered mattress cover. Get a good HEPA filter air cleaner and have it running 24/7 within 3-4' of your child's head, esp. when they're in bed. Sometimes you can score a great "dinged" model on Amazon of Austin Air, IQ air etc. I bought an Austin Air for less than the price of a replacement filter. But honestly, any reputable HEPA air cleaner, like the Honeywell 200/300, is going to be much better than none at all. The key is that it only collects and cleans air well from a 3-4' radius. Get a good sealed HEPA vacuum cleaner, and vacuum the house often. Wear a good face mask and gloves while handling contaminated stuff. Even the best fitting N100 face mask (with a valve) only reduces your exposure by about 80%, because the seal iis never perfect. So pay extra attention to the seal, (I had to buy 4 different brands before I found one that fit my short face). Vacuum all dusty objects before handling them. If at least the most vulnerable parts of the family can move out while the unaffected members stay behind to supervise remediation (from an IICRC certified firm), that will help. (I ERMI tested my relatives' bedrooms first) Throw out any fabric-upholstered furniture, pillows, mattresses and carpeting in significantly contaminated rooms. There are exceptions to this but as those things are impossible to clean completely, this is the clearest, "easy to say" rule. If there are no active leaks, don't waste your money on ultrasound, ozone, etc treatments to kill the mold -- a dead mold's toxins are just as toxic as a live one's. Healing Before focusing on elimination, have to support the liver, gut and kidneys, since those are essential to metabolizing and excreting the mycotoxins. See Neil Nathan's book, or Shoemaker's. It is important to do the milk thistle, Liver GI Detox or such first, else there won't be much elimination, no matter how much mycotoxins there are in the body. That means you'd also get a "false negative" on any urine tests. There are herbal and medical things one can do to help eliminate mycotoxins. Many folks would say that it's best to start on those after the patient is out of the contamination, certainly for powerful tools like Cholestyramine, which some folks become sensitized to if they're still inflamed from active mold exposure. Too much to say at this time of the night. But there are certainly youtube videos to help. If you're not sure that mold is a major part of your child's issues, then you can do genetic susceptibility testing (see Shomaker's DRB-DQ) testing. If you want to have a sense of how much your child may have absorbed, there's no direct measure. The best you can get is how much they are excreting. After they are able to excrete. That's the reason for step 1 in this section. So, after you do the first item in this list (getting the liver working well), have the child do a urine mycotoxin test from Great Plains Lab or Real Time Labs. . Neil Nathan's book gives other tips for making the test more likely to be positive, to show what's stored, and goes over the pros/cons of the two labs that do these tests. PS. Just FYI, here are some key mistakes I made: I didn't move out my son to a friend's house as early as I should have. I kept a lot of things at the start, not realizing the risks of cross-contamination (I'm a former refugee - it's hard for me to toss things), I appeased DH more (he really didn't want the hassle, and thought I was being extreme). We had our stuff in a POD outside our home, some apparently getting musty from the repeated condensation. We didn't get our "un-contaminated" parts of the home re-tested before moving things back in, and bought new mattresses before we knew all was healthy. We didn't fully follow Shoemaker's 3-phase serum testiing protocol (test before leaving, do 1 month of cholestyramine 4x daily, re-test after a month. Reduce cholestyramine. If you have to wait to re-enter home, enter home, re-test again just before return, and re-test 4 days after re-entry to see if you're tolerating the remediated home. We didn't do the 1-month test, to show us iif he was ready to reduce the dose. I didn't check my son's therapist's office and OT therapy room for mold. Both turned out to be highly contaminated and when he began doing both, he had a relapse. I didn't realize that inability to eat much, and nausea could b gastroparesis from mast cell activation (from mold) I expected my relatives to understand why I had to be so anal once we got serious about keeping DS away from mold. I was blind-sighted by their judgmental reaction, (while I was also pleasantly surprised by the understanding and caring from less close friends,.) there's lots else. Still, my son is definitely healthier and happier now. The process stinks, but knowledge is power. Good luck. It's been a month since you posted. please add a status update and ask more questions.
  19. pchelle, did your daughter fully recover? How long did it take the strep to leave her system? How long was she on antibiotics? Thanks!
  20. Anytime—good luck! Just about a year ago I was crying along with my son who was covered in hives and making horrible noises every time he had intrusive thoughts. Now he’s happy and healthy so there is definitely hope.
  21. Found the citation: Identifying targets for autoantibodies in CNS inflammation: Strategies and achievements April 2010Clinical and Experimental Neuroimmunology 1(2) DOI: 10.1111/j.1759-1961.2009.00006.x Edgar Mein, Tobias Derfuss, Christopher Linington
  22. I know this is old, but I'd love to see the article, but the link says I don't have permission. Can you please list the citation, so I can try to find it?
  23. Thank you so much Cmac; the hope is so appreciated right now.
  24. 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 there were some minor signs from earlier in the summer, too. I had never heard of PANS/PANDAS before all this. As for your original question I think we started to see some improvement after about 8 weeks on a certain combo of antibiotics (biaxin and augmentin) and then dr switched up antibiotics to get the myco p. Although no two kids’ path to recovery is the same it does seem like it takes awhile to get better. (I had such high hopes for our first 10 day course of amoxicillin that the pediatrician put him on when she discovered the strep). Hang in there—it’s going to get better.
  25. My son seems to have recovered, but like Cmac I am reluctant to conclude this is it. He had symptoms since he was very little, they became very serious when he was 11. He was then diagnosed and put on antibiotics, had a tonsillectomy, received IVIG, and stayed on antibiotics for several years. He is now 16 and doing well.
  26. Cmac, that is great to hear. So glad your son has had a great improvement. Did he have other symptoms besides intrusive thoughts such as emotional liability, defiance, tantrums? If so, when did you see them go away during treatment? Thank you!!
  27. I’m scared to say yes, but....yes. Since last May he’s been doing really, really well. A few bumps along the way, but nothing major. He talks to me about what it was like when he was so sick —the intrusive thoughts and beliefs he had—it’s enough to make me cry, but he seems to be processing it all.
  28. That's awesome!!! Glad to hear it. Thank you so much for replying!
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