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  3. July-Fireflies

    Anyone got worse on probiotics?

    Hmm, Our policy as prescribed by our naturopath is that anything that seems to cause a flare is discontinued, with symptoms noted. If this is a supplement you feel is necessary it can be reintroduced later using the start low and slow method. Can you get probiotics another way? Fermented foods, miso, kombucha, etc? Sometimes it's better to get it in a food as that particular supplement may be tolerated better as the food contains other nutrients that work in an entourage effect. Good luck, we've had horrible OCD flares here too and it's no fun. You sound like a strong, intelligent, proactive person!
  4. Hi -- I sent a private message to you just now. Let me know if you can't locate it. (In case you aren't familiar, look for the little envelope at the very top right side of page in the blue bar)
  5. Our DS(16) did the abx protocol for about 5 yrs (6-11 or 12). He greatly improved without needing abx once puberty hit (as predicted by his ped). His only side effect from the abx protocol was an occasional stomach ache. We mitigated with probiotics. He now just takes probiotics and sometimes advil when he has a headache. I suspect most of his headaches are PANDAS related. We are not a medication happy household, so I had the same reservations about prophylactics. However, when weighing the risk of tics and other behaviors becoming permanent, we decided it was worth a stomach ache or two. As he improved and puberty set in, we felt comfortable dropping the abx and dealing with flares with advil and probiotics. I can confirm that he was triggered by bacteria as well as viruses, so more PANS than PANDAS. This occurred even when on abx, tho to a lesser degree. I can also confirm the dental triggers, loose teeth def had an effect. We tried for years to alter his diet and insert supplements, but he's a very bull headed kid and with two other children it was difficult to enforce. Had he been a more severe case, I'm sure we would have been more vigilant. He is 100% most of the time. I see shadows of his hyper behavior and tics occasionally, but very mild and nothing that bothers him. No one else would notice if they didn’t know.
  6. Hi Chanis, I'm sorry you are dealing with tics in your teenager and also have concerns with your little girl. I know someone in London who may be available to connect with you, let me see and get back to you, OK?
  7. bws1565

    Anyone got worse on probiotics?

    You can find lots of candida info here https://candidaspecialists.com/
  8. ronime

    Tics or tourettes

    Thank you so much for sharing your story and encouragement...I am definitely thankful for what it is ,what its not..I have a friend that lost her 5 year old to cancer 2 years ago snd lat her husband a year later...I definitely am thankful for my childrenis health ...I just worry about him suffering,being bullied...I shouldn't assume that's going to happen,that is what I'm learning..I'm sure God will bless him with wonderful friends that will be his support system along with his family...again thank you so much,wish you and your family the absolute best!
  9. GABA helps our kiddo alot. But we had to get enough of it to see the difference. We give it with l-theanine and ibuprophen. The response was so striking it led to testing for antiGAD65 autoantibodies which are positive 😂. We give every 3 hours.
  10. Does anyone know of any doctors, pediatricians, immunologist or allergist in the Branson Springfield Southwest Missouri area that can help with pandas or pans? I am at my wit's end. My son is flaring and his next appointment in St Louis is not until September of next year. I need help before then
  11. Wombat140

    Anyone got worse on probiotics?

    Replying in no particular order: I don't have Facebook. I'm in Britain, Culturelle isn't sold here unless I ordered it off Amazon or somewhere, and that'd be a long wait and is there any reason to think that would be better, if it's oznly that it doesn't have s. Thermophulus, which this doesn't either? I know about Strep thermophilus but it's not there; Pro-Kids contains only four strains - Bifidobacterium infantis, Bifidobacterium lactis, and two kinds of Lactobacillus but I forget which (haven't got the bottle handy). No, no constipation, in fact these probiotics have given me the runs a bit. That leaves the yeast - no idea, it could be, I suppose. I forget what the symptoms of candida are supposed to be, except the obvious physical ones (the cracked skin, itching and red bits), which I don't have any of. I'm nervous of taking antifungals on top of all this thouguhy in case I make things still wrose! Surely if the problem is the candida dying off, takking antifungals would just mean even more die-off, wouldn't it? Or wouldn't it?
  12. July-Fireflies

    Anyone got worse on probiotics?

    You made SURE that brand of probiotic didn't have a strain containing strep? Many do, that has commonly triggered flares in many many kids. You can search it on the forums on FB. You can take the kids probiotic Culturelle found in most drugstores.
  13. Hi I have a 11 year old daughter with Tourettes. She started when she was six. She went to play therapy when she was 8 which helped; the tics stopped. Unfortunately, they returned about a year after she stopped play therapy. They weren't too bad and they stopped and started, so we ignored them for a couple of years. She recently started Senior School and they have really flared up. She goes from one tic to another every few weeks and each one drives me crazy! At the moment she is sticking her tongue out and winking at the same. Now my 6 year old daughter has also started making grimaces, so I am desperate to deal with both of them. Can anyone recommend someone in London, England that I can speak to?
  14. bws1565

    Anyone got worse on probiotics?

    Firstly 12 billion is not that much. I have known people to take 100 billion per day. If you are dealing with yeast, you must watch out for the die off reaction. When candida bursts, they release a toxin in the bloodstream that makes everything temporarily worse. So yes, you can get worse at first when dealing with this. I would recommend a candida killer together with the probiotics so you can "kill the weeds" and "reseed the lawn". Candida killers are : Garlic, Diflucan, green leafy vegetables, caprilyc acid etc. I'm sure there are more, but these come to mind right now. Also, if constipation is a problem, the yeast might just be sitting there and not moving anywhere. We tried a saltwater flush and saw some good results (its nasty but works....) It means mixing 2 tsp of Himilayan pink salt together with 4 cups filtered warm boiled water, and drinking on an empty stomach. Good Luck!
  15. I've been doing searches and found a few posts but not very clear so I thought I'd ask again. I started taking the Hyperbiotics Pro-Kids probiotic on Thursday (yes, I know I'm maybe a bit old for that but it was because Lordchallen's daughter was taking it for *ahem* very similar symptoms). I took 2 a day to start with, that's 6 billion Colony Forming Units, then nothing seemed to be happening and things are already quite bad so I was impatient for something to wrok, so yesterday and today I took 4, that's 12 billion CFU. Written down like that it does look rather a lot. Yesterday and today, things have been particularly dramatic, in the exact same way I was supposed to be taking these things for - insane frustration at the least thing, agitation, panic, OCD getting set off catastrophically at the least thing, lengthy ranting at my parents. Mum describes me as "hyper" whatever exactly she means by that. Query. Have any of you or your kinds got worse on probiotics? And, if so, was it a worse-before-it-gets-better thing, or was it actually just worse and the correct thing to do was stop? And which ones (what species of bacteria were in them)? Please, it would be a great help if any of you could put me in the picture.
  16. Her body has been in the fight or flight phase for 10 years or so, I just figure that can't be healthy. Since we've started these exercises I swear she's continuing to improve, so whatever the reason we'll take it! OK so we are sort of in the same boat, with body of DD in sympathetic mode for years. Can you elaborate more on these techniques and how they are helping? And what would be your experience with traditional psychological therapy for these issues?
  17. prestopony

    Flare protocol and prognosis?

    I'm not sure I'll be much help here either - I wonder the same things you do. My 14 year old daugther is a PANS case - never had strep, but believe allergies/chronic sinusitis to be the culprit. Just diagnosed in March of this year, though suffering since she was a toddler - had excellent success with Augmentin, much less so with Zithro. Did 30 days of the Augmentin - we did see a minor regress when she came off the Augmentin that I don't think we were able to really regain, UNTIL - - - she had a flare about 6 weeks ago, I think due to a cold - no infection in bloodwork, so we opted for 30 days of Naproxen (Aleve) instead. She responded extremely well, dare I say back to Augmentin-like improvement. She is now off the Naproxen and seeming to maintain, but it's only been a week. So in total, I'd say she recovered from her first flare, and I'd credit the Naproxen. Her doctor's plan B - should she not have responded to the Naproxen - was going to be prednisone, just as an fyi. So I wonder what will happen with the next flare, or I wonder if she will just gradually diminish over time. She stays on her supplements all the time - in fact, I made the mistake of switching up her probiotic - and wouldn't you know - she definitely regressed. We went back to the old probiotic, and all is well again. She has about 10 supplements that she takes daily - everything from addressing inflammation to methylation to Vit D, Quercetin, and more. I'm also throwing a bunch of neuromotor stuff at her - the MELT method and MNRI exercises, to try to get her sympathetic nervous system to chill out. Her body has been in the fight or flight phase for 10 years or so, I just figure that can't be healthy. Since we've started these exercises I swear she's continuing to improve, so whatever the reason we'll take it! Good luck on your journey, maybe others will chime in!
  18. What would be the best way to get rid of these two: Parasites and Mucoid Plaque. I assume that dd has them. She is very constipated and definitely acts much better when she is not. I am looking into colonics. We have tried a saltwater flush which seems to have helped alot especially behavior wise, but dd said she is never ever ever doing this again. She felt really horrible after drinking the formula of 4 cups warm water with 2 tsp himilayan salt dissolved in it. Any good product you have tried with great results appreciated.
  19. maryangela

    Flare protocol and prognosis?

    This doesn’t directly answer your question, but I think a loose tooth would be considered an infectious trigger...from hidden bacteria being unleashed. My DS first severe onset occurred 48 hours after having dental work. He was given psych meds for 2 1/2 years, which made things much worse. He only began to improve after I found out about PANDAS and began treating with natural antibacterial and NAC. When my DS had his second and most severe onset, we saw limited improvement from natural antibacterials, but took 7 months to find a doctor who would try an abx. He became completely debilitated during this time. He no longer had an active infection (normal strep titers), but responded beautifully to Augmentin. It was miraculous. Unfortunately, the high dose was only prescribed for 30 days, and he declined. We were never able to recapture this recovery with abx alone. In the book Shadow Syndromes, one of the Stanford MDs talks about the difficulty “recapturing” the recovery from abx if they are stopped.
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  21. jason_dfw

    TIC treatments using Tenex

    My son was also prescribed Guanfacine (Tenex). The recommended dose for his size is 4mg per day, however, we never progressed beyond 1mg in the AM and 1mg in the PM for the non-extended release form. That dosage along with magnesium citrate and B6 vitamins have done the trick. Tenex can have some side effects which we hoped to avoid, and so far so good on the lower dosage. The ADHD symptoms which arrived around the same time as the tics have greatly diminished and the tics are very manageable, at times gone altogether when not super amped up during sports or extremely stressed. Based on our results, and of course everyone is different, I would have no problem recommending the non-extended release of Tenex / Guanfacine.
  22. mlee

    Epsom salt baths?

    Yes. 1/2 to 1 cup Epsom salt in his bath water nightly for about 10-15 minutes.
  23. mlee

    Epsom salt baths?

    Thank you! Yes he responds very well and I’m glad to hear that others have done nightly baths too. This puts my mind at ease. Will continue to ensure he drinks lots of water and will watch for laxative issues should they arise. Thank you both!!
  24. Chemar

    Epsom salt baths?

    Hi mlee I agree with Sheila's comment, and can add that my son had tremendous benefits from his nightly Epsom Salts baths. and when a full bath wasn't convenient, he would do the Epsom footbaths We always ensured he drank plenty of water, and never noticed any laxative effect from the transdermal uptake, just soothing of tics and muscles, and sound sleep following. Good to hear your child is also responding well to this.
  25. Sheila

    Epsom salt baths?

    Hi mlee, Assuming there are no serious health issues (heart disease, irregular heart beat, colitis or other digestive disorders) there should be no problem with short nightly Epsom salt baths as you describe. A side effect such as dehydration would typically only occur with hot, long baths. You can also watch for any laxative effect. Usually 1 to 2 cups of salts are used for a standard tub. Is that what you are doing? It's nice to read that it seems to be helpful.
  26. Sheila

    Tichelper.com

    OK, thanks for the response. We would love to hear what you think, if you do try it.
  27. lulu648

    Tichelper.com

    Thank you Sheila. Will report back if we try it.
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