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Everything posted by MMC

  1. Hi annieg, I’m sorry to hear of your child’s issues. I know it is very difficult to witness your little girl’s discomfort and can certainly relate to your desperate feelings. I am not very active on this forum, although I do check it occasionally. It has been nine years since our son was diagnosed with PANDAS (also PANS). He will be 20 years old this June. He is much better, but is still being treated by docs at Duke. Duke does not recognize a PANDAS/PANS diagnosis…they call it AE (Autoimmune encephalitis). AE has different symptoms, severities and causes, but is basically inflamma
  2. Like powpow, steroids, (oral and IV) have relieved symptoms of our DS which are definitely autoimmune based. Steroids lower the inflammation, DS gets better. IV steroids are one of the main treatments (at least for our DS) at Duke.
  3. Wow, this is an old post, first one I posted on here in fact on 2009. Brought back some memories, mostly bad, but that's ok. Our son is now 16 and a half. We have seen several doctors over the years. He is currently being treated at Duke by Dr Van Mater (Pediatric-Rheumatology) and Dr Gallantine (Pediatric-Neurology). They combine efforts and expertise to treat kids with autoimmune encephalitis. PANDAS/PANS falls into this category. Duke does not really recognize a PANDAS/PANS diagnosis, but if they can find evidence of an autoimmunue condition that is causing Encephalopathy, they will t
  4. Our DS does this. We don't think it's a tic...and he has had about every tic imaginable. It is related to his dust / dust mite allergy.
  5. Sorry to hear this. I agree, it's a tic or OCD compulsion. Our DS had a similar problem a couple of years ago, right after he got braces. He could not stop biting the inside of his cheek. This caused a downward spiral in all sorts of symptoms for several weeks. We had to get his braces removed. It took forever for his cheek to heal. We think bacteria was getting in, and also thrush was on his tongue...caused major autoimmune reaction in general, more swelling in brain, I think. He has had previous issues with any type of dental work, especially teeth being pulled. We have held off on b
  6. Thanks for posting. I did not read it all, but it encompasses a lot, including PANDAS/PANS. We have seen two doctors at Duke since October 2013, and they have helped DS16 greatly with their treatment, which includes IV steroids and Cellcept. Here is a link to an AE website with a video... https://aealliance.org/ Also, Duke had an AE Symposium back in June. I live only 50 minutes from Duke, but was unable to attend. There are video clips on the above website from some of the speakers. Dr Latimer always said PANDAS/PANS falls in the AE category and she is the one who referred us t
  7. I just read the article. It's the first time I remember seeing documentation of an autoimmune blood disorder, "We discovered that he actually had an autoimmune disease attacking his blood and blood vessels,” explains Dr. Jennifer Frankovitch". Sounds similiar to what the docs at Duke found in DS15 end of last year. They found an antibody attacking his platelets. His platelet count was always low and this is why. He always bruised easily. I can't remember the name of the antibody or condition they called it, but kudos to Dr Van mater, Duke pediatric rheumatology for finding it. This an
  8. We also did it back in November when DS was hospitalized for a battery of tests. Looked normal. It was mainly used to rule out things. I don't think it is sensitive enough to pick up PANDAS type inflammation as others have stated.
  9. Hello bdt, I am one of the few dads on this forum and am in your area. We are North of Raleigh. Just like powpow, we also see the docs at the neuroimmunology clinic at Duke. Two great doctors there. We have also seen Dr Latimer in Bethesda, MD (among other doctors), been at this over 5 years. She actually referred us to Duke after she ran out of things to try. I am going to PM you my contact information...top right corner messenger icon.
  10. Yes, please keep us posted, we might be headed this way also. Depending on what the docs say after one more month of IV steroids.
  11. DS15 has taken clonidine at night now for almost 5 years. It has been a life saver, at least a sanity saver. It calms him down (from his tics) and gets him to sleep. He has tried it during the day, but it makes him too sleepy so cannot take it...unless we are on a road trip or something. It has no side effects that we can tell. Dosage for him is a .1 gram tablet, and we sometimes cut it in half if he is doing well. So, its a very small dose.
  12. Sorry, I had to delete some messages. I PM'd you.
  13. Our DS15 just got an IEP coded as OHI (Other Health Impaired)...just signed off on it yesterday. We are in NC. Math was a big reason, and reading/verbal skills also. Our DD18 also has a more minor case of PANDAS and she is weak in math. I was weak in math as well. My kids get PANDAS from me since I had Sydenham's Chorea. So...something with quantitative reasoning is affected it seems when one has PANDAS...at least for some kids. When there is swelling in the brain, weird things happen, is the way I explain it to myself. I was glad to see the school psychologist who recently tested D
  14. Last year, DD17 had white patches in throat and strep test was negative (I thought it would be positive for sure)...it must have been yeast. It went away after we gave her one fluconazole pill that we had left over. She is on Pen VK daily, so it would make sense to have some yeast, but it sure looked like strep white spots.
  15. Our DS15 is getting one right now, I will ask him this afternoon when I see him around 3:30 how it was. They gave him a valium pill to hopefully calm his tics down. I had one when I was 7, stung like a bee is about all I remember...that was back in the70's, when they didn't numb you or give you valium.
  16. smartyjones, that IS bizarre...posted within 2 minutes of each other! maybe it was meant to be...
  17. This sounds similiar to what happened to the reporter, Serene Branson, when she was on the air reporting from the Grammies a couple of years ago. Its on youtube. Although, it affected her speech instead of writing. She was just speaking gibberish. They thought she had a stroke, but it was diagnosed as a complex migraine. Any migraine history with you or her?
  18. I will have to dig up the Cunningham tests we did for both our kids in 2009 and compare with this article. Agnes26, thank you for finding this article and posting the link. I will print it out and bring it with us on our visit to the ped rheumatologist doc we are scheduled to see at Duke next month. She works in conjunction with a Duke neurologist and they specialize in treating autoimmune encephalitis. Dr L referred DS15 to her, and ordered additional blood tests for her review. She thinks there is still some autoimmune generation happening, and we have missed the origin of it all along.
  19. Our DD, who is now 17 started out EXACTLY like this...eye blinking tic at the age of 5 with no other symptoms. I had Sydenham's Chorea at age 7, so I knew this could be related to strep. We had her tested and she was positive for strep. Over the years she had strep several times, and tics would wax and wain. As she got older, we realized she has some minor OCD and sensory issues. And she was diagnosed with ADD around the age of 8. My educated guesss is the ADD is from PANDAS. It is hard to distinguish co-morbid symptoms in very young children, especially when their PANDAS / PANS is on t
  20. I was just reading this article. This is a much better method than a fecal transplant.
  21. We are in Raleigh, NC. We've seen Dr Corbier and Dr O'Connor. Our best go-to PANDAS doc is Dr Latimer in Bethesda, MD. Very knowledgeable, compassionate doctor. We just saw her last Friday. We are presently trying to get an appointment at Duke with pediatric rheumatology, autoimmune encephalitis doctors. Our DS15 has had PANDAS / PANS for 4.5 years now and Dr L says he is "stuck" with his symptoms, and ordered additional blood tests and referred us to Duke...but as stated, they do not recognize PANDAS, so we will not be using this acronym with them. Unfortunately, you will find the PAND
  22. Anyone on the forum see Dr Heather Van Mater at Duke? We will be trying to get an appointment with her soon. Dr L recommended we see her. We are hoping for good things, someone local to help DS15.
  23. Right, qannie47, "out of it" is a good description and we too have to summon him verbally several times when this is happening. Which has been about every 2 weeks lately. It sounds like you have experienced this with your DS as well. We will ask Dr L about this on Friday. I don't think the video game causes it, b/c it starts before the game.
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