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  2. 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.
  3. 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!
  4. 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).
  5. 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.
  6. 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?
  7. 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
  8. Earlier
  9. @mamafour What dose of Azithromycin for your child’s flares and for how many days? How old is your child?
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. 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.
  18. Hi Prestopony, what was the dose (augmentin)?
  19. Hi Maryangela, when you say high dose augmentin, what is the dose exactly?
  20. Hello, I am just seeing these posts now though they are 5 years old ! Cara I am going through the same thing with my daughter. How have things been ?
  21. PS I also learned a lot from Peter Breggin's book "Your Drug May Be Your Problem" and other of his writings https://breggin.com/your-drug-may-be-your-problem/
  22. Hi LATT1 The withdrawal period, and severity, of coming off a medication depends on the type of med itself, along with the length of use. We were advised to titrate down very slowly, so from full dose to 3/4 , to 1/2, to 1/4.... then half that, quarter that till off. It was suggested to have at least a week between titrating down doses. We did this under physician guidance, with great care and it still took over 6 months till we felt my son was "back". During withdrawal we relied on acupuncture, resonance biofeedback, Chinese cupping and other natural detox remedies. It wasn't easy, but oh the relief when we had him off those horrid meds that were doing more harm than good!
  23. Hello - I 'm new and reading Natural Treatments for Ts & Ts. I am finally finding people whose experiences are like ours. My 12 yo has terrible tics. I believe meds are making them worse. Can anyone tell me how long the washout period is and what might help the demonic behaviors that go along with it? I realize I need to find some allergic / food triggers first before I try to convince the dr. Thank you.
  24. When my kid got mycoplasma my doc gave him an HCL push. One of the VERY BEST, most STRIKING, results we ever got! He felt better by the time we had left the office. Here is the recipe: 5 CC of HCL 4 CC selenium 1 CC Magnesium Chloride 10-15 cc normal saline
  25. Hi All after trying many years with combination of supplements I have finally given into considering medication for my son entering 5th grade as his Vocal tics are really bad and doesn’t seem to be getting better . Guanfacine is my first try...any thoughts on this working long term for tics or is it a waste to even start it if it doesn’t work long term? Please help. thanks VV
  26. Hi, my daughter has also struggled with PANS/ PANDAS and her mycoplasma titers have been elevated this year as well. She never tested positive for Lyme until she had a recent test through our LLMD, who has treated her in the past even though she just had indeterminate test results. She has also been treated effectively a few years ago with IVIG from a PANDAS specialist. It helped, but symptoms came back, and she was showing more fatigue and aching muscles the past year. My hunch was this is Lyme. So she saw the Lyme doctor again recently and she recommended this time that she get a urine Lyme test through DNA connections. It came back positive for Lyme, Bartonella , and Erlichia. I am so glad she had that test, and we could stop wondering whether Lyme was a factor or not. I’m frustrated that past diagnostic tests for Lyme weren’t positive and thus she continued to suffer. She is currently being treated for Lyme again, and Bartonella and Mycoplasma. There are new regimens the LLMDs are using for persistent/ chronic Lyme, including Disuliram, which is still experimental but showing promise, and a combination of Dapsone along with other antibiotics such as minocycline and rifampin. None of these approaches are easy, but they are reports of people getting better after 3 months with Disulfiram, and a few months or more of Dapsone protocols. I STRONGLY recommend you get the Lyme panel DNA Connexions test. It is not cheap- 650 dollars, but you don’t need a doctor’s order- you go online and pay and they will mail you the kit. There are too many people walking around with Lyme that are undiagnosed. Lyme can manifest as predominantly neuropsychiatric symptoms in children as well. I don’t work for the company I’m just a mom that has dealt with this was for too long, and now I think there may be hope for kids and adults with Lyme Your doctor- even some PANDAS docs and most PCPS- won’t even be aware of this test Good luck!
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