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  3. I was definitely concerned that it would impact his molars. Specifically I was concerned that they wouldn’t touch. That didn’t happen. He did end up with space between his front top two teeth. But it went away. When he was about 13 his tics stopped. The dentists said that it was because his teeth grew into the desired position because of the mouthpieces. I used to accept that. But now I suspect that the neurotherapy was responsible. But I do know that for years the mouthpieces kept his tic in check.
  4. Is that the same as strep? But maybe in nose? My son got strep in november but we treated with antibotics and then in dec had a 6 week cough. When we took him to pedi for the cough they said his ear was red and gave us antibotics. I think they labelled it middle ear infection. The antibotics did nothing and the cough persisted until it stopped on its own and with the help of allergy medicine. march tics started with some anger issues. He seems to get mad quicker. Tics come and go but throat clearing always present. I can control tics somewhat with allergy medicine but the throat clear always there regardless of medicine. Then a few weeks ago my son got a throat infection/croup and was given steriods. Throat clearing stopped with 3 day steriod but came back. Now last week we went to allergist and he commented on my sons throat clearing and checked his ear and said he has fluid in his ear. Told me he didnt want to give me antibotics but suggested salt water gargle and going to ENT. I looked up fluid in ear and came up with serous otitis media. I read 40 percent of time fluid in ear is this streptococcus pneumoniaebacteria. I tested my son ASO a few weeks ago but it was less than 20. Any input is appreciated.
  5. To bigal- Didn't the wearing of the mouthpiece for so long impact his molars or change the shape of his teeth at all, pushing them into the gums? My son only wore one for a year before it did that and he couldn't wear it any more.
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  7. Didn't realize I posted a similar question a month ago here. Didn't get any response though.
  8. Hi all, I was wondering if there is any medication that doesn't have side affect as drowsiness. Does such medication exist for Tourettes? I used to be on Risperidone for over 10 years, but my new doctor when I moved to different province changed me into Haldol because risperidone was no longer working and my tics were really bad. Haldol is working somewhat. maybe 50 to 60 percent I think. However, I would still like to have more benefit out of medication, more like 80 to 90 percent. And I hope to find one that doesn't make me drowsy, so that I can also take it in the morning. Right now I'm only taking it before bed time, and it makes me fall a sleep right away, and I don't think it's as effective in the morning, afternoon, and early evening. My doctor is not very experienced in tourettes. I couldn't find a doctor in this "smaller" city that has significant experience in this area, and the association here only accepts patients who are not adults. I'm 25. I've tried to change food intake, but I don't think I can live my life with eating only those "natural" and "clean" food all my life. It's very depressing. I also tried medical cannabis. In order for it to be "somewhat" helpful, I had to take almost 2mL per day (still within recommended dose from the special doctor I saw), but it was way too expensive, as cannabis is not covered by most of the medical insurance in Canada. For regular prescription medication, with my coverage from work, I have to pay only very little per month. I also tried Natural Calm but doesn't seem to help much, and it's too much hassle for me to boil water every evening to make it. If it helped tremendously, then I can do it, but not really. I also recently bought Magnesium cream to apply directly on my face and other parts of the body that I have tics. I'm not 100% sure if it works or not, but I'm not sure if buying a specific Epsom Salt cream would work better. This magnesium cream I bought claims it helps with pain in the body. Review seems positive on Amazon. I also have chronic sinusitis, and in the winter, when my nose is stuffy, my tic gets much worse, and when my face is dry, same thing. So keeping my face moisturized is definitely a thing I need to do. But even then, I still have facial tics. Anyone find Epsom salt cream helpful? Any help would be appreciated. Thank you.
  9. You would need to check that with your doctor, especially as your child is so young. We were told by our physician that it would be ok to use again (short term) if needed, just not to use it continuously/ longterm
  10. lulu648

    Tichelper.com

    Has anyone tried tichelper.com yet? Interested to see if it's helping people. Thank you!
  11. lulu648

    Touretic OCD

    Just starting to learn about touretic OCD, anyone out there have experience or information on this? Thanks!
  12. tsh_73

    24yo w/ PANDAS - need help!

    Hi 4Nikki, thanks for the reply - I will look into all that.
  13. Dd was diagnosed with hashimotos disease and her mycoplasma numbers are very high. Any correlation? Can anybody weigh in? Found this article: https://www.ncbi.nlm.nih.gov/pubmed/2754187/
  14. starfish

    Vocal tic left, need ideas!!

    Do some people use L-Carnitine regularly? Like would it be ok to use it for a few weeks or month, then take a few months off, and start again? Not constantly but in intervals.
  15. Hi mlee He had an intense loud shrieking tic which was why he started on the L- Carnitine and it was amazingly resolved by the supp and it never returned. I was skeptical at first, but it really did help. Once we stopped the carnitine, he did still have periodic "uh huh" type very soft vocal tics, but they did not bother him or anyone else and so we let them be.
  16. mountainmom

    Fifth year of PANS, now what?

    I do low sugar and no gluten. I'm not seeing these things helping. I'm so at a loss!
  17. 4Nikki

    Fifth year of PANS, now what?

    Has anyone mentioned diet? Sugar is a big exasperator of symptoms for our daughter. You probably already do something like this but we keep a daily journal of everything she takes and note the symptoms, behavior and intensity. This helps us to track and report more accurately to the doctor.
  18. Hi Chemar, With the L-Carnitine were the vocal tics reduced or eliminated when your DS went on it briefly (1 month?). Did the effects last? Thanks!
  19. 4Nikki

    24yo w/ PANDAS - need help!

    Hi, sorry you have to go through the symptoms. My DD had steroid blast treatments each time her symptoms got worse but after she completed the treatments she had big improvements. The treatments lasted from 6 to 8 months. We’ve heard that the tonsils can hide strep and some have them removed. In DD’s case her autoimmune system suffers from having mitochondrial cell deficiency. She takes supplements to support her mitochondrial cells. It helps to make her symptoms manageable.
  20. tsh_73

    24yo w/ PANDAS - need help!

    MomWithOCDSon -- thank you so much for your reply! I actually did go to Dr. Latimer, who diagnosed me with PANDAS. My concern with the rituximab is mostly that I just have a feeling that it won't work for some reason. But I am keeping it in mind as an option. I will definitely try to find an integrative physician and look into methylation. That is really interesting about the histamine - I didn't realize that could all be related.
  21. MomWithOCDSon

    24yo w/ PANDAS - need help!

    tsh_73 -- Sorry for what you're going through. Unfortunately, yes, I think many of us -- and many of our kids -- were dealing with PANDAs for years before a diagnosis of such, and the impacts are wide-ranging and probably unnecessarily prolonged due to a lack of recognition in the general medical community. It sucks. As for the most proximate and PANDAs-literate doctor to you, I imagine Dr. Latimer (DC area, I believe) is probably it. It will take a while to get an appointment, however, and I don't know what her insurance acceptance situation is currently. Many professionals in the field have gone the route of private pay only, leaving the insurance fight for reimbursement solely in the hands of the patients; they can't afford the manpower or the time required to fight with the insurance companies over treatment protocols, etc., I expect. I commend you for seeking the root and basis of your auto-immune issues, and genetic testing will likely give you some clues. Unfortunately, though, the auto-immune cascade that can lead to PANDAs and other "rare" conditions is still emerging science, and even if you or a medical professional are able to identify some mutations that may underlie your condition, treatment is still likely to be something of a trial and error process. If you can find an integrative physician in your area, that might be your best bet as a PANDAS specialist like Dr. Latimer is unlikely to have sufficient availability to walk with you through all of the trials and tweaks. I know many people have had success with these underlying issues by closely examining and addressing the methylation cycle. Certain gene mutations make the cycle inefficient and/or lopsided, and that, in turn, can impact the way your body processes various substances, balances neurotransmitters, etc. I only know enough about it to be dangerous rather than helpful, but an integrative physician should be enormously helpful in this regard, and you can search this forum with key words like "methylation" and garner a lot of information. In the meantime, may I ask, what is your concern about trying the rituximab and see how your body/brain responds? Afraid of the drug itself, or afraid it may mask the symptoms you're attempting to ferret out the root cause of? I'll just offer that, in our experience, this is something of a long, twisty road, and if you are at a point where you're having trouble functioning in the world, dismissing options that may help you be more functional, if not "fixed," may make your road tougher. It's a very personal decision and I respect your right to make the one that feels right to you. At the same time, I have seen with my own eyes the benefit that some medications gave my DS while we fought the PANDAs and returned his immune system back to a healthy status. Finally, I'll just add that your dialated pupils, sleep disturbances, mood crashes and reflux could be histamine related, histamine being a necessary neurotransmitter, but in a dysfunctional system, over-produced or over-absorbed to a level that can result in some of these symptoms. This is another piece of the methylation cycle that treatment can help correct, though, again, if you're looking for some temporary relief, a histamine receptor (H2) antagonist like Pepcid may help short term. Wishing you all the best!
  22. Hi everyone, I am almost 25 and just got diagnosed with PANDAS a couple months ago. When I was six, I had Sydenham’s chorea and was put on prophylactic penicillin, which I continued taking until age 22. For the past few years I have been having increasingly bad symptoms and finally just found out that I have also had PANDAS the entire time. I also scored very high on the Cunningham Panel. Unfortunately, IV steroids made me worse, and the treatment recommended to me is rituximab, which I do not want to do. I feel like I need to figure out the root cause of why I am having an autoimmune problem. My symptoms are the following: -OCD -Mood crashes every few weeks related to OCD -Tics -Sleep disturbances -Social anxiety -Eye problems: My eyes and eyelids start to feel like they are shaking if I try to look at someone for a few seconds straight while trying to concentrate on what they are saying (has anyone else had this??); Occasional throbbing pain above and behind my eyes or pain when moving my eyes; Dilating pupils -Digestive problems -Acid reflux -Achy muscles sometimes -TMJ -Plaque on teeth -Some numbness in arms and legs when lying down at times Things I have tried: -Bactrim (no effect in first week) -Candex (same) -Air purifier for mold -Probiotics -Infrared sauna I am doing 23andMe and am thinking of doing tests for heavy metals, mold, other autoimmune diseases, gut testing, and maybe others. If anyone has any ideas or thoughts, I would be very appreciative. I am pretty desperate to get better 😑 Any recommendations for doctors in the Northern Virginia area would also be helpful.
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  24. mountainmom

    Vagus Nerve and Inflammation

    This is very interesting! Thanks for sharing. Curious how they stimulated the nerve in human subjects....
  25. This popped into my social media feed today, and I thought it was very interesting. http://mentalfloss.com/article/65710/9-nervy-facts-about-vagus-nerve
  26. starfish

    Sleep problems and kids with tics

    Thank you Chemar. I will look into the micrograms of melatonin and the other things you mentioned. I appreciate your advice so much.
  27. TeamTyrion

    Thank You!!!......... and HELLLLP!!! ;)

    Hi there! I haven't commented in this forum in years? But I read your post and wanted to comment. I'm so glad you have found a supportive GP - that is quite rare as you probably already know. As far as your explanation for the inflammatory procress, I *think* it's correct. It's been a while since I read the science behind the inflammation but what you wrote rings all the bells. A couple of things I wanted to recommend. I feel strongly about the use of some sort of nasal spray to combat the infections that trigger the TH-17 responses in the nasal passages (and ultimately lead to inflammation via BBB). The product we have used, with great results, is XLEAR. I pick it up at the local health store. It acts as a "natural antibiotic" for the nasal passages. It contains, Xylitol, saline and Grapefruit Seed Extract. We have found it invaluable in our home for both preventative measures and treatment. Also, have you considered getting your tonsils and adenoids removed? Good luck! And hope you continue to find answers :)
  28. Chemar

    Sleep problems and kids with tics

    Hello Our Integrative doctor recommended very low dose melatonin 300 MICROgrams after dinner. It really helped and we only needed short term use as my son's sleep pattern improved. But he was already 10yo so I am really not sure for a child of 5. If you used a higher dose, that may have been the problem? Our doctor warned us against Valerian for a young child although said ok for adults. Passiflora (from Passion Flower plant) is also used by some people, but again I have no idea re a very young child like yours. There are also soothing essential oils that can be diffused or in some cases applied (check first re application as not all essential oils can be used topically, some should only be diffused or inhaled. They can sometimes have a very soothing effect and promote good sleep. My son has always found an Epsom Salts warm bath very helpful for sleeping soundly. Chamomille tea is great for relaxing and sleep, and can even be used in infants from what we were told. I'm sure there are a lot of other natural sleep remedies, but those are some we found helpful. PS When there was agitation etc resulting from not being able to sleep, we used a few drops of Bach's Rescue Remedy (Flower Remedy) under the tongue, which is an instant calming agent, but again do check re age before use.
  29. Hello everyone, I am hoping to get some advice (or at least commiseration). Background: My son, who’s 5, started having both motor and vocal tics 7 months ago at age 4.5. We haven’t gotten an official TS diagnosis because it hasn’t been a full year yet, but I expect he will meet the criteria for it. He has sleep problems for most of his life, but they’ve been worse in the past couple years. His biggest struggle is staying asleep, not so much falling asleep initially. He often wakes multiple times during the night and frequently can’t go back to sleep. He tosses and turns for hours even if we lie next to him. Or he wakes very early for the day, like 4am. On his good nights he’ll sleep 7-8 hours straight, which is “good” for us but I know that still isn’t enough for a child his age. He truly just can’t sleep. He’ll even ask, “mom, how do you fall asleep? I can’t do it.” I now understand his sleep issues are connected to his tic disorder (although he doesn’t tic while sleeping or falling asleep that I have seen). I see how his tics (and behavior/mood) are worse when he gets less sleep, and I want him to sleep better so badly. My husband and I are exhausted too. We’ve worked so hard the past 7 months to improve his diet and overall health, but we can’t *make* him sleep, and I feel that is probably a major missing piece in the puzzle of trying to minimize his symptoms. Has anyone else experienced this? Anyone know of any supplements or ideas that work to improve sleep for TS kids? I’ve tried melatonin (didn’t help and gave him nightmares), we already do lots of magnesium, a nightlight, and have a good calming bedtime routine. Is it worth taking him for a sleep study?so far doctors have been dismissive about it or suggested it’s more of a discipline issue. Or is this just part of TS and not much we can do? Thank you so much for any insight.
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