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  2. Hi I do understand how you are feeling as my son went through a bout of coprolalia (cussing/swearing) tics when he was 10 and it was hard for him as well as for us (he does have a Tourette diagnosis, genetic from his Dad's side) Coprolalia is recognized as a vocal tic in Tourette Syndrome. All TS tics are involuntary, so that makes the struggle when dealing with "socially unacceptable" tics even harder, especially as often having people notice or comment makes the tic even harder to suppress. My son had Cognitive Behavioral Therapy, and that really helped as he was able to learn ways to substitute words or say the bad ones under his breath. A good CBT therapist can really help tremendously...but it was our experience that it's best to have someone who understand TS He is 30 now and living a productive life so please know there is hope, even after the multitude of assorted tics that have waxed and waned over the years. Things were at their worst for him when neurologists and psychiatrist put him on those very strong prescription drugs, so just do be informed before you accept prescriptions from the doctors etc you are planning to see. I know not everyone reacts negatively to the meds, but when they do, it can be long lasting and very seriously detrimental. We found tremendous help by addressing his diet, environment, allergies etc and supplementing with nutrients he needed. We also used a number of other alternative treatments that made a very positive impact. I have an old thread that gives some info on what we did to help him https://latitudes.org/forums/topic/687-the-treatments-that-have-helped-my-son/ I would also encourage you to look at the section on the ACN/Latitudes website on TS tics https://latitudes.org/conditions/what-is-tourette-syndrome/ Also the very helpful resource books by Sheila Rogers on natural treatments for tics/Tourette and learning what triggers tics https://latitudes.org/store/natural-treatments-for-tics-and-tourette-syndrome-book/ https://latitudes.org/store/tourette-syndrome-triggers-book/ I hope this helps a bit, and that you will be encouraged in knowing things can get better and there is much reason for hope!
  3. Our 9 year old son has dealt with kids since he was 6 years old. So far they have been minor, barely noticeable and at times completely gone. Within the last 4 weeks, he started to mumble and upon closer questioning he said that it was swear words. He is extremely healthy, has been on abx maybe twice in his life, has always eaten organic (has never been to McDonald's) and is rarely sick. He has not shown any signs of ADHS or OCD. He has a large group of friends and has always been well-rounded and well-mannered. No allergies. My question is: Have any of you experienced waxing and waning of vocal tics with swearing? Simultaneously, he also has a walk tic that makes him stop and go. It is almost impossibly for him to simply walk. We are heartbroken. We have lined up appointments with a therapist, psychiatrist and neurologist, but they are still weeks away. Any feedback is greatly appreciated.
  4. Last week
  5. I can't recall the name off the top of my head. Its been a while. But shes at children's. Anyone can read the tests and provide insight if something needs help. The numbers are pretty basic to them and they are properly trained. Unlike us desprate parents! We got confirmation of Pandas through the Cunningham panel. Maybe getting it, it helps with stress relief as well? Vital kids medicine Dr G or Dr Rhoy at center for healing neurology Is a good place to get good direction toward tracking down the root causes of your child's issues. The build up of ensimes and anti-bodies in the brain, reported by the Cunningham panel is a result of something else. We have to find the something else. In our DD's case, at least part of it, is deficient mitochondrial cells. Once we got DD on support for mito, her symptom became more manageable. Some Doctors are better at deductive reasoning than others. I like the ones that have a D.O. acronym behind their name. DW is a surgical nurse and she likes the Dr's that are the best surgeons. She's changed many pcp's. I think the best doctors are the ones that give good advice. I've had one doctor in Washington for the last 7 years. In Southern California, I had one Doctor. My Dr. Is also DD's primary even though DD has a great pans/pandas doc. Our kids have very complex cases and its a good idea to have checks and balances when seeking treatment so there is plenty on concise reasoning behind our decision making. It also helps keep the expenses down, while seeking solutions that are hopfully the right choices.
  6. It is prescription. It’s made at a compounding pharmacy. I was hoping my DS would start last Saturday, but it wasn’t shipped when I thought. Should arrive tomorrow. I’ll keep you posted.
  7. Is this available only through a study, or do you have a prescription?
  8. msmom, Thank you for sharing your story about your adult children. Their stories are quite familiar to me. PANDAS/PANS has to be one of the etiological factors for CFS and some of the other comorbidities that tend to go with PANDAS/PANS. And I have to note that having such a varied presentation makes it very difficult to explain all of this to physicians. And yes the physical and neurological issues can be really debilitating and seem to overtake the neuropsychiatric issues. Sending you and your family warm, positive energy....
  9. Yes, both of my children, now in their mid to late 20's had PANDAS/PANS, and both have CFS. (They have had the PANDAS since childhood, but it wasn't diagnosed for years and it wasn't a severe problem until they neared purberty.) My son still has severe PANDAS/PANS, but my daughter doesn't have any OCD at all now, although she has many physical issues, including CFS. (She also has Sjogren's Syndrome.) They have both been very physically and neurologically debilitated. All of these immune issues seem to be related.
  10. So sorry this is so delayed. I am new to this site and didn’t know anyone had commented. I went to Dr Froomes in Melbourne, Australia. It’s basically $300 per fmt and you should do 4 weeks, five times per week. I had an initial phone consult with him $235 and then just went for it. As soon as the kids finished school we flew there, got an Airbnb near his office and did it. Both my kids are doing great! My PANDAS kid has no symptoms. It’s been about two months. We were lucky and that our youngest child was tested and passed as a donor so we can now follow up at home. I’m super eager for other people to try this. I’ll answer any questions people have but I think the best thing to do is message me because otherwise I don’t get alerted that anyone’s responded
  11. Earlier
  12. I saw one positive post on Synapsin nasal spray. My DS 15 will be starting it today. He was a severe PANS case. OCD and tics 80% gone from almost 2 years of monthly HD IVIG. He still has focus, anxiety and executive functioning issues. I’m wondering if anyone else has tried it, and how it worked out.
  13. We are deep within the Seattle Children's network and currently stuck with a number of specialists there saying "this is PANS" and also we are unable to treat or acknowledge it. Would you be willing to share the Endocrinologist's name you had luck with? Thank you for your time!
  14. We did a whole bunch of different probiotics—Culturelle, GutPro, Flora, etc. For antibiotics the ones that he was on longest were a combo of Biaxcin/Augmentin and then later Clindamycin/Rifampicin because the strep came down, but not the Myco p. (The Clindamycin was really rough on his stomach though).
  15. I am new to this forum, so hello to everyone. I am a woman in my early forties with PANS/PANDAS and CFS. I am wondering if anyone has both or suspects that they have both. It is my understanding that PANS/PANDAS can frequently turn into CFS in adulthood. I am wondering what your experiences are with all of this. I probably had a somewhat debilitating case of PANS/PANDAS during childhood but just never knew it. The signs were there. In my thirties the PANS became very severe. Over the past decade or so the PANS started turning into CFS. I still have the PANS but the passage of time and treatments (antimicrobials, anti-inflammatories, energy treatments) seem to be taking the edge off of the worst parts of the illness. However, now I am often bedridden/housebound because of the CFS and the herxheimer reaction to the PANS treatments. My main treating physician and I are trying to figure all of this out. I have also seen specialists for CFS and autonomic dysfunction. It's been a rough journey but I keep going and my doctor does too, so I am hopeful/optimistic. It would be great to hear from others about their experiences...... thank you.
  16. YES! I heard about this on Del Bigtree's highwire show and was astonished by it. I know several people who are DESPERATE to try this! Can you share how you went about this; contact information etc. Price, where to call, anything else you can think of?
  17. Do u know what probiotic they used? My doc has us on bactrim...and after reading Dr. Garth nicholson's treatment looks like that is not a good treatment and the past 14 days have been worse since on bactrim
  18. @mamafour What dose of Azithromycin for your child’s flares and for how many days? How old is your child?
  19. My son had myco p and strep and it probably took 5 plus months of treatment before the intrusive thoughts started to subside. We also tried going gluten and dairy free and definitely saw improvement. He still gets the thoughts occasionally, but now can use some therapy techniques to help with that.
  20. I wonder if CBT would be an option? It can be very helpful to learn some ways to deal with intrusive thoughts. My experience with my son (diagnosed at age 12, now 16) is, like PandasDad said, that OCD/intrusive thoughts are hard to get rid of, so managing them is important.
  21. Intrusive thoughts/OCD always seem to be the hardest to crack. Been at it for 5 years, diagnosed 2 years ago, undergoing treatment for 1.5 years, all ticks etc gone, but intrusive thoughts wouldn't budge. And hearing similar stories from so many families. This is not to discourage you, but just to say that this is the greatest challenge, at least based on our experience and research.
  22. Can anyone give me some direction when having my son allergy tested? At 15-16 he's developed verbal tics, but has had a history of eye rolling/blinking and occasional grimacing since 5 or 6. I'd like to have him tested for both food and other potential environmental allergies. We've cleaned up the diet and he's been gluten/dairy free for some time and we've noticed a reduction in occurrences. I've not been able to find a "Holistic" or "Natural" Allergist/Immunologist who may know the specific testing that would serve him best. Do you think a general type of Allergist/Immunologist would suffice? Is there a specific panel of tests that is recommended? Or is it best to test for every potential food/environmental allergy? I've also noticed that there are some online/mail-in testing available for under $200. They claim to run a full panel of testing, but not sure of the reliability. Do you feel the in person "prick" testing would be more accurate? I was also curios if these tests will reveal a specific degree of intolerance. I understand his body may have not have a complete intolerance to something, but there may be a "weakness" to it. I'd greatly appreciate any direction or recommendations and advice anyone can offer. Regards.
  23. Since DD has been diag myco p pans, they started her on bactrim 2x a day for 14 days then 14 off and so on ... she is just upset that it is not going away. I have a strict schedule for medicines so o follow protocal to a T!! Im thinking too, that she should have had more testing for strep side and other stuff. Just to be in the clear but she wasnt.. The doctor mostly tested lyme and myco p. Then the day before scheduled treatment, my daughter got another virus. This is all too much if i could take her thoughts away i would.
  24. I need to ask a very awkward question by PM. Is there anyone who'll let me PM them, who is familiar with PANS and in particular understands what the phenomenon of "invisible walls" (as in "Saving Sammy") is? Somebody I've spoken to before would be preferable, but whatever I can get.
  25. My 17 year old daughter suddenly had a psychiatric breakdown where she told me she has been hearing a mean voice telling her horrible things and urging her to harm herself. At the same time she started getting severe acne and extreme social anxiety. She then admitted to me that she had heard the voice at times of stress throughout her life. I took her to a very reputable adolescent psychiatrist who diagnosed her with anxiety and assured me she was not schizophrenic which was my biggest fear. He prescribed ssris which made it all worse. and she had to be hospitalized because the voice started telling her to kill herself. I had a feeling her problems had to do with her early childhood strep infections and/or her catching mono at age 8. She and I checked into PANDAS and both felt it was a strong possibility. Coincidentally at the same time we were going through this crisis, I got news that Arizona State University had recently released results of a study revealing that fecal microbiota transplant therapy (FMT) had shown very encouraging results with autistic children. Since my oldest child has autism I began to research fmt and saw many accounts that it worked remarkably well for anxiety. I started realizing that if fmt works as is claimed it is essentially an immune system transplant, since most of our immune system is in our gut and it is basically a gut transplant. I couldn't find any accounts of people doing it for PANDAS. I was extremely desperate to help my poor daughter, and excited to try fmt for my son. Since I didn't want to wait around for the ensuing FDA trials I took my children to Australia and had them do fmt with a gastroenterologist that specializes in fmt there. My daughter began to lose symptoms beginning in the second week and by week four had no symptoms left at all. She has not had even one anxiety attack, the voice is gone, the other symptoms are gone. It has been three months and she is 100% symptom free. She has gone off all meds (she was on risperdal for the voices) without any return or symptoms. I can't really prove she had PANDAS (but I believe she did) but I just wanted to share in case it could help anyone else. My son has normal stool for the first time in his life, has lost 20 pounds, and everyone around me says they see huge improvement in him. I feel he is doing well and am happy to see his stool look normal, and he is definitely doing well but for me only time will tell. They say it takes a long time to see the autism symptoms start to diminish. This journey was extremely expensive but we were desperate, and actually it wasn't as expensive as the hospitalization, etc. my daughter went through. I don't want to give false hope. I want to share in case it makes sense to any parents to try like it did to me.
  26. I don’t recall the dose because it was the liquid form. He took it 3x a day for 30 days. I believe it was the equivalent of 500mg 3x a day. DS was 11 at the time. When it was lowered to 2x a day, it stopped working.
  27. Hi Prestopony, what was the dose (augmentin)?
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