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  3. ryfrancis94

    Tics getting worse, and I'm almost 25

    I live in Houston, TX.
  4. Last week
  5. maryangela

    Anyone tried IV Ozone?

    Yes, it was IV Ozone. It’s considered “alternative” in the U.S., so it definitely wasn’t covered by insurance. I believe Glutathione is usually administered with Ozone. My DS didn’t have it with first treatment, but had the Glutathione with 2nd treatment. He went into a rage after the 2nd treatment. Doctor said it was a reaction to Glutathione, and had me give him Molybdenum (mineral) to help him tolerate the Glutathione.
  6. searching_for_help

    Anyone tried IV Ozone?

    Thanks so much for your response. Did he have IV ozone, or another kind? Did you have to pay out-of-pocket for ozone? It's interesting - I've heard several people mention the HD IVIG not being effective, but the more frequent ones being helpful. Glad to hear your son is having good success!
  7. maryangela

    Anyone tried IV Ozone?

    @searching_for_help Yes, my DS did 13 Ozone treatments over 3 weeks in August of 2017. It was supposed to be 15 treatments, but his OCD symptoms were so severe, it was a safety issue getting him to and from the treatments. After about 10 treatments one of his OCD issues went away. This was where no one could speak while standing in a doorway or near a doorway. We are in a 2 bedroom condo, so we are almost always near a doorway. This was a huge relief when this went away, but he still had many, many more equally difficult symptoms left. Not sure if it would have made a difference if he completed all 15 treatments. After the treatments his bloodwork did show him clear of all infections. Ultimately, he was approved for monthly IVIG. He has had great success with these...nothing short of a miracle. He had one HD IVIG six months prior to Ozone. This was no where near as successful as the post-Ozone IVIG. It could be argued that clearing the infections with Ozone impacted the success of the IVIG.
  8. searching_for_help

    Anyone tried IV Ozone?

    Curious if anyone has tried IV Ozone, and if so, did you see any benefit? PANS dd has so many different issues it's like whack-a-mole, and nothing seems to help for long, if at all. (Bartonella, Marcons, Mold toxicity/Ochratoxin A, parasites, especially high in Blasto, etc, etc) Wondered if the ozone might clear out several problems at once.
  9. searching_for_help

    Bartonella/PANS case report

    This is a case report about a 14 year old boy with psychiatric issues. Turned out to be PANS. Published in the Journal of Central Nervous System Disease, just a few days ago. There are images of the Bartonella rash. Just like the rash my dd has had in past. https://doi.org/10.1177%2F1179573519832014
  10. Sheila

    Tics getting worse, and I'm almost 25

    Hi Ryan, Welcome to the Forums, and I'm glad you wrote. It is clear you have been though such a tough time with your Tourette's. I'm sorry to learn of it, and all the meds you have tried unfortunately haven't been enough help. What area of the country do you live in now? I'm gong to send a private message to you--please watch for it, OK? Sheila
  11. Hello "ACN Latitudes" members, my name is Ryan and I've had Tourette's since around 8 or 9 years old. I turn 25 years old on April 7th and have been on so so SO many medications over the years that I can't count them on both hands and both feet. I've been on Fluphenazine (I don't know the non-generic name) for over 9 years. It is an antipsychotic, and I personally feel that it has affected my memory. I constantly forget to do something my parents had just asked me to do not even 5 minutes before. Up until the summer before freshman year of high school, the tics had been fairly basic. However, I developed coprolalia while in the middle of Disney World in Florida on a July 4th weekend. Of all the words known to mankind, I developed saying the "n" word. The coprolalia has progressed over the years, except I still say the "n" word constantly. The tics were actually pretty tolerable, however, once I graduated in 2012 and moved on to college my Tourette's and the tics EXPLODED. My OCD, ADHD, and tics got severely worse. I think it has to do with me not having a consistent schedule anymore and am eating out a lot more. I'm honestly just so lost as to where to start on my journey to figuring out natural/alternative ways to heal my Tourette's. I'm just tired of being tired all the time due to my meds. I HATE HATE HATE medications. I have tried CBD oil, I was considering DBS (Deep Brain e Stimulation), and am just....at a loss.....I don't go out anywhere...I live in my room on the computer or sleeping.. I promised to NEVER let the Tourette's win..but I'm at a point where I don't care anymore.
  12. Hi everyone! Has anyone tried CBD (cannabidiol) for OCD and/or Tourettes? It's readily available now at Whole Foods and stores like that, and it seems like something that may help with tics and/or OCD. Please send along your thoughts and or experiences with this. I'm not talking about medical marijuana, which has THC and is different. Thanks.
  13. lulu648

    Cannaboid OIl-RESULTS!

    I know this thread is very old. Can anyone update? CBD is readily available in stores now, capsules, drops, etc. Has anyone had success long term with this for OCD and/or tics/Tourettes? Thanks for any updates and thoughts!
  14. jonal5680e

    Tics or tourettes

    Hi Ronime, PANDAS is linked to strep but PANS is other types of infection aswell. Def look into this as I feel strongly that this is what is happening to my son. Here’s a link for the UK pandas organisation but I’m sure there is a US one. I’ve also emailed them directly for info and they are super super helpful: https://www.panspandasuk.org/resources God bless and keep me updated on everything. You aren’t alone in this!
  15. ronime

    Tics or tourettes

    Hi Jonal, My son started having overnight panic attacks as well. For the last 3 weeks he wakes up around the same time every night crying, very angry. One night he was crying because he didn't say good night to us which he did but it wasn't his usual 3 times. He always has to say good night 3 times. He's usually so moody, one night he got mad because I was touching his pillow and he said my hands were dirty. Definitely OCD. He's only 3 years old. I definitely need to research PANDAS more. His first neurologist tested him for strep and I believe it came back negative. I definitely feel I need to research this more. Sending the best wishes your way and I will continue praying for our little ones.
  16. jonal5680e

    Tics or tourettes

    Hi i posted a while back re my little boy. I’m looking into PANDAS for him. He went 3 months without any tics and then overnight had panic attacks and onslaught of multiple tics. He also had what looked like tonsillitis and so had him tested for Step which cane back positive. We are now being referred for a second opinion as both times he has come out with tics he has had strep. I also find that his behaviour totally seems to change. He is usually a very happy and laid back child. But he changes to being very moody and extremely easily upset and emotional with OCD type thoughts. My son also doesn’t know anything is going on but I feel like I’m living in a nightmare. I would say to def get your little ones checked for PANDAS aswell. All of the stuff I’ve read and looked into is so heavily connected to immune systems and sensitivities. It’s a mine field and im just so thankful that we all have this site to talk and raise things. Hoping and praying that we all find answers or at least are able to find the triggers for our little ones.
  17. ronime

    Tics or tourettes

    Hi Starfish, I feel your pain and frustration. My son also has had periods of no tics and then suddenly he starts having them again. He has gone a good two months with absolutely no tics and then started having them again. It definitely is an emotional roller coaster. I feel that he tends to get them after being sick, when he is tired or eating candy. He hasn't had the breathing tic since August, now it's mostly blinking. I also notice a change in his temperament when he has tics. He's a bit more moodier and even has signs of ocd. Praying for our little guys. I know what you mean about the worrying, it's never ending. My son also has no idea what's going on and his teacher says no one notices anything, she hasn't even noticed anything. Hang in there! Thank you for the update!
  18. tictictoc

    Possible PANS/PANDAS or Tourette's

    Hi Thank you for the reply I hope someone with a similar experience replies as we are in the middle of figuring out whether it is TS or PP. She is on antibiotics for one month and that is worrying me a bit what if I am giving her antibiotics for no reason and actually doing more damage than good. But another thing is that she has quite a bit of strep going on in her :)
  19. Wombat140

    PANS - oddball symptoms

    Encephalitis means specifically inflammation of the brain, not other parts of the body. But you're right - it's pretty much the same condition, Streptococcus pyogenes infection followed by the immune system attacking particular parts of the patient's own body after mistaking them for more streptococcus germs. (Just to confuse the issue, there's already a sub-category of rheumatic fever for effects in the brain, Sydenham's chorea aka St. Vitus's dance, but it's a different part of the brain producing different distinctive symptoms. Perhaps one day PANDAS will get reclassified as a subgroup of rheumatic fever too.) So it seems possible that what's going on there is an inflammation in one of the rheumatic fever places as well as the PANDAS place, and it's suggestive that you've had both conditions. (My grandmother had rheumatic fever, too.) I suppose it'd be for a doctor to say whether Garden's daughters' symptoms really are the same as the joint pains in rheumatic fever.
  20. Wombat140

    Life and loves of a Panda

    I'm also hyperflexible/hypermobile, whatever you want to call it. It's odd, isn't it, how often that seems to go along with PANS and/or Asperger's syndrome? Anyway, that probably explains how a few days ago, while panicking, I managed to bite myself very hard in the leg above the knee. It's come up in the most magnificent green and purple bruise. Life has its little compensations, doesn't it?
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  22. Hi there I just wanted to welcome you to the forum tho sorry for your child's struggles. Hopefully parents more knowledgeable than me re PANS/PANDAS will soon reply, but my understanding is that Tourette Syndrome and PANDAS are not mutually exclusive, and that yes, some kids are dx TS when in fact it is PANS
  23. Hi everyone I have been reading the posts here for almost a year now, which has been so helpful in many different ways. I finally found the courage to post and share our story. I will really appreciate the input of those who have had similar experiences. I have a 5-year-old daughter who developed tics around May 2018. Prior to that, I do not remember her having any tics, compulsions or repeated behavior of any sort. I will try to keep it brief. She had chickenpox in April 2018. Looking back, she started facial grimacing, touching cars, getting upset because she had to be the one to close the car door quite soon after chicken pox. I did not think much of it. At the beginning of May, she had an accident which resulted in nose trauma. By the end of May, it felt like, overnight she developed face stretching/squeaking noise/snapping jaws. I was devastated as the first thing that came up on the google search was Tourette. Her tics were constantly changing in the combination of multiple motor and vocal tics. We visited a couple of neurologists who all diagnosed her with provisional tic disorder and told me that there was nothing that could be done besides to just wait and see if they last for more than a year. That's when I remembered that when we visited my husband's dad and his half-sister, they had both vocal and motor tics. But they do not talk about it. When I asked if any of them had a diagnosis, his step-mum said that the daughter's tics started when she was young, they even had MRI done and were told to ignore them. I would say her case is quite mild (unless I saw her when she was in the waning period) because she is going through puberty and has simple motor and vocal tics. My father in law, more understandable, he grew up in the 70s and not many professionals knew about Tourette's or diagnosed it, they were just called tics. For that reason, I never entertained the thought of PANDAS as I thought this must be genetic and this was the card my child was dealt beside that her dad is tic free. Fast forward, her tics calmed down by end of October but really came back with vengeance by end of January. By the end of February, she was prescribed antibiotics for her UTI and 90% of her tics subsided. So, I thought, it won't heart if I take her to a neurologist (U.K Based) who is PP friendly. Dr. K told me that decrease in tics after antibiotics would suggest the possibility of PP and she ordered blood tests, nasal swab, throat swab, and perianal swab. She was also put on co-amoxiclav for a month, which reduced her tics farther, she only has throat clearing tic. Although, I am not getting my hopes up as it might just be a coincidence. However, I got the results today and they are the following: A.S.O Titers - 555.3 (normal range is <200) IgE - 73.9 (normal range is <48) Anti-DNase B - 393 U/ml Nasal Swab showed: Moraxella catarhhalis Streptococcus pneumoniae Throat Swab showed: Staphylococus aureus Perianal swabs showed: anaerobes So my question is that even if you have a family history of tic disorder can tics still be initiated by infections triggers? Or this is just a tic expression mediated by infections triggers which are commonly observed in Tourette's population. I am quite confused as they do not seem to differentiate between Pandas tics and Tourette's tics as most academic papers suggest that Tourette's kids have immune issues anyways. Anyone who has a family history of possible Tourette's but has had success with tics by treating infections would be much much appreciated
  24. Chemar

    Tics or tourettes

    Hi starfish Sorry to hear of the setback, and do hope you find more answers, as well as that your son's system will stabilize again soon. I remember only too well how awful it was when the tics flared for my son after exposure to the yuck stuff! Once we learned that he had MCS (Multiple Chemical Sensitivity, diagnosed by an Allergist who ran excellent tests) he really understood why I was being so strict about the artificial stuff in food, as well as environment (one of his biggest triggers is perfume and regular household chemicals etc) Best to you
  25. I don't see any new Swedo study. There was one a few years ago that was controversial due to the study design and everyone was irritated because it clouded the issue. See these older discussions:
  26. tsh_73

    PANS - oddball symptoms

    I have PANDAS and rheumatic fever, and when I first got rheumatic fever one of the early symptoms was joint and knee pain and I think general leg pain (I don't quite remember because it was a long time ago). And rheumatic fever is very similar to PANDAS, basically the same thing / on the same spectrum of autoimmune encephalitis from strep.
  27. Hi - that's interesting about the IVIG. I don't have any experience with that treatment so I am not sure. But as for the antibiotics, I would say that you may see some improvement on antibiotics within a month, but it may also take longer than that to notice much. I am 25 and have had PANDAS for 19 years and only figured it out last year (was diagnosed with rheumatic fever a long time ago but not PANDAS), and I was prescribed Bactrim last year for one month. I did notice some improvement, but it was very gradual and at the time I couldn't even fully tell if it was doing anything. And I also couldn't tell if it was from the antibiotics or something else. But I know the antibiotics were working because the second time I got on antibiotics for longer than a month the symptoms definitely started to fade. As a side note I have tick borne infections as well so that definitely complicates things.
  28. starfish

    Tics or tourettes

    I haven’t been on this forum in a while, but wanted to add an update as well. My son was virtually tic free again from November until the end of February. Only a very soft breathing noise at times, which was totally unnoticeable unless you were looking for it. We felt this improvement was due to being very strict with his diet again (organic, gluten/dairy free, dye/artificial free, lots of fruit and veg), staying busy and getting lots of exercise, and supplements (magnesium threonate, elderberry syrup, methylfolate/B12). Then the tics returned with a vengeance the day after he was given a load of horribly artificial and dye-filled candies and chocolate at an extra-curricular activity (despite our telling them not to give him these things). 😡 That was 3.5 weeks ago, and the first 2 weeks were pretty bad with a major, constant facial grimace reappearing. I was so heartbroken, but at the same time it helped to feel there was a somewhat controllable reason for it happening (diet). Now we are at 3.5 weeks since that happened, and it I see definitely subsiding. Still there but less. I am really hoping that soon it will be minimal or gone. I have days where I feel optimistic and that this will be manageable, and days (nights) where I cannot stop worrying about what if it gets worse, and all the what if’s. Overall he is a very happy, busy, social kid who is showing up for life just great. He has no idea anything is wrong. I’m thankful for that. It’s been one year now since it all started for us, which is a bit hard to swallow as he now officially meets the criteria for TS. I am still interested in looking into PANS more, since his original onset was very sudden and came soon after being very sick. It’s just hard and very, very expensive here (CA) to find doctors that are knowledgeable. Anyway, long story short, I am grateful for the progress we’ve made, and hopeful that with time and living a healthy lifestyle we will make more progress. My next goal now is working on myself and my own anxiety and attitude. 😅
  29. I'm wondering about how children know and describe a flare...does your child recognize a flare when it starts, or is about to start? What do they notice? Any physical sensations? Emotional? I'd like to help my son begin to notice and feel the signs of a flare approaching/beginning and I'm thinking the descriptions of other children could be helpful in our learning curve. Thanks.
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