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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 inflammation in the brain caused by an autoimmune reaction…and strep can cause this. There may still be some on the forum whose child (children) have been treated by the AE docs at Duke who can speak to the illness better than me. But, in a nutshell there is a team at duke that you need to try and see…go to this website for more info… https://aealliance.org/ The main docs are a pediatric neurologist, Dr William Gallentine, and a pediatric rheumatologist, Dr Heather Van Mater. Duke neurology clinic that you have an appointment with may not be much help, but maybe they can help you get an appointment with Gallentine and Van Mater. Another doc we saw who was very helpful to us (and many on this forum) was Dr Beth Latimer in DC. She is a leading PANDAS specialist, and is worth the trip up there. She has seen both of our children, (our daughter has PANDAS as well, but nowhere severe as our son.) http://www.bethlatimermd.com/ I am going to PM you as well…to see it, click on the messages icon on the top right of the webpage after you login.
  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 treat it. Treatments could be IVIG, IV steroids and any number of prescriptions they may use. We have been going there over a year now. Our son is better, but still needs treatment at this time. Dr Latimer in Bethesda, MD is an excellent PANDAS/PANS doctor. Start with her, if you need to. She treated our son several years and eventually pointed us to Duke...which is nice since it is only a 50 minute drive for us. We live just North of you. I will also PM you and offer contact information for myself or my wife. Look for this in the messenger inbox at the top right of the Forum. Also, here is a link to the aealliance at Duke... https://aealliance.org/
  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 braces. They cause inflammation anyway, with gums and such, all too close to the brain for him...it was a nightmare.
  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 to Dr Van Mater and Dr Gallantine at Duke. They are treating a few other PANDAS kids that I know of. They found a blood auto antibody affecting DS16's platelets...causing them to be low...which gave them evidence of an autoimmune problem, supporting an AE diagnosis. All this outside of PANDAS/PANS post strep infectious issues, so it got complicated...but, we are glad they found some evidence to allow treatment. It is a relief to find a team at Duke who understands the issues at hand, and they take insurance of course. We just pay our copays and deductibles, all in BCBS of NC network...no questions asked.
  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 antibody gave them the proof they needed for an autoimmune problem. They then prescribed 4 rounds of monthly IV steroids. Steroids worked wonders, so they started cellcept 2 months ago. We continue to see improvements...school is better, personality is back, OCD is lower, ADD is lower. Tics are still there, but less severe. The steroids and cellcept have helped him better than plasmapheresis or IVIG or Abx have.
  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 DS15 knew about PANDAS, and it is on paper with the school system that this is the disorder qualifying the OHI IEP. We are excited...pretty major step for us in getting DS help...with this IEP on paper, it is formal...NC law now recognizes our child has this disability (PANDAS) and will get services because of this disability. The lead EC teacher in the meeting documented it several times as well. They seem very willing to help DS...he just had to go thru a lot of testing and paperwork. Dr L signed off on the PANDAS diagnosis. I explained different docs call it different things depending on who you talk to. Right now, DS15 is more PANS than PANDAS, since he hasn't had strep in a long time, and his titers are low...always have been. But, his current treating docs have found evidence of other autoimmune issues, but that's another topic.
  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. I am glad Dr Cunningham is linking her testing to SC, which is a more accepted diagnosis over PANDAS / PANS. We have been advised not to mention PANDAS at Duke, as they want no part of that controversy...which is fine by us...we just want help. We are desperate after 4 and a half years of seeing DS suffer. Do we know why Swedo felt she had to coin a new diagnosis some 15 years ago anyway? Is it because PANDAS kids have neuro-psych symptoms without chorea? Both our kids have chorea, which present more like tics most of the time...but then, there is the other neuro stuff as well, especially with DS. School is very difficult for him at this time...ADD/ADHD, brain fog, constant tics, cannot do homework, etc. We have discussed home schooling if needed. Good note on the Valproic acid. We would certainly try some Depakote if it would help. I find it interesting they had to team with a hospital in Jerusalem to produce this study. Is there not a pediatric hospital in the US willing to do a study like this?
  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 the minor side....this is our daughter. On the other hand, is our DS, who is now 15. He started with tics at age 10 after strep exposure. Unfortunately, his symptoms were much more severe. Tics were (are) the main issue, they are severe... but he also presented more traditional PANDAS / PANS symptoms...separation anxiety, OCD, brain fog, ADHD. The neuro psych symptoms increased with age. We are still trying to figure his puzzle...still some type of autoimmune inflammation going on we think. He is able to attend school, but struggles a lot and I know he missed about 20 days of school last year. We have friends who have young kids with tics (facial and eye blinking) and they know about PANDAS from us. There has been postive strep, but not enough other symptoms to necessitate seeing a PANDAS specialist. They are just diagnosed with a transient tic disorder...which is probably a mild form of PANDAS in my opinion. I have learned there is a wide range of PANDAS / PANS severity. It depends on the child. I think it would be beneficial to have some sort of measurement scale, 1 to 10 or something like that. Hopefully, this child's symptoms will remain mild. Many kids have this "transient tic disorder", and grow out of it. But, I would encourage them to watch their child and be aware of these other neuro pysch symptoms that can increase in the way they present with the child's age. And if needed, definitely have them see Dr Latimer in Bethesda. She is the best doctor we have seen for PANDAS. We now have an appointment to see a pediatric rheumatologist at Duke in November for DS15. Dr Latimer referred us to her. She doesn't treat PANDAS, but Dr L said she can test for more autoimmune inflammatory causes. We are hoping she can find something we have missed in the past, and treat him.
  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 PANDAS diagnosis to be controversial, but don't let this deter you getting treatment if this is what your child has. If you see Dr L, she will probably first order the Cunningham test from Moleculera labs. http://www.moleculera.com/ Be prepared to pay out of pocket for some of the testing and Dr visits.
  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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