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Everything posted by emmalily

  1. Hello PANDAS family! Just a quick update to let you know I am still doing well, though still experiencing PANDAS symptoms with immune system stimulation, as I did just recently following a very bad upper respiratory that went into bronchitis and gastritis. That said, PANDAS symptoms came and went. Joint pain arrived on a Wednesday. OCD arrived on a Sunday. Tics arrived the following Wednesday. All were gone by the second Saturday. No med intervention besides using a little extra Xanax. I took a couple days off from school, got some TLC from family, and was back to it. Finishing my thir
  2. Just wanted to put in my experience: I had the meningitis vaccine when first going off to college, just a few months before knowing that I had PANDAS. We knew something was up with my body, obviously, and debated the vaccine but decided to go for it. I didn't experience a reaction for that. I was happy to have it this past year when there was a small outbreak of meningitis at one of the colleges in my city; I felt protected. For me, based on my symptoms, a PANDAS exacerbation is better than Meningitis and I would probably risk it again if I was ever living back in a dorm situation. Now wit
  3. Hives are always a signal for me that some PANDAS-y stuff is about to hit. I seem to get them when my immune system is stimulated, ESPECIALLY at this time of year with seasonal allergies starting. I just start taking an anti-histamine daily until the pollen calms down, and the hives seem to reduce.
  4. Thanks LLM...this just sucks so much right now but I'm making a plan and I think I'll be back out of the hole by my first school break which is in three weeks. Thanks for believing in me! Will def consider 23andme...would make sense to have some more info about my body going in. emmalily
  5. Ok, I'm finally taking the leap. After being in a low-grade exacerbation that was held at bay with antibiotics since October, it exploded this week following my first use of hormonal birth control (I know, I know, should have known better from the anecdotes on here that the hormones would be a bad idea...), a death in the family, and the stress of starting at a new school. Tics, OCD, and panic galore. That said, I am in a bad place and as I'm only in the third week of the first semester at my new 4 year school (terrible beginning to what was supposed to be an exciting transfer) I am truly
  6. Hi, I don't know why my messages won't come through. I'll trying sending you one...thanks!
  7. Hi all, The conference was great this weekend! I found the talk on intranasal strep very interesting. I am doing very well, in college & working & writing professionally, but I still had a few flares within the last 18 months. Each seemed to be kicked off by a sinus infection. So I thought I'd have my sinuses checked out, just to see if anything funky is going on in there. Does anyone have the name of a New England-based ENT who is PANDAS friendly? emmalily
  8. Hi Nancy! Once again totally feeling like peas in a pod with your son. Gotta say I experience this badly when in exacerbation, but it backs off when I am well. As a reader/writer, I am usually able to tear through written material and i know how annoying it to not be able to do that. I just wanted to say, that while I absolutely think it is so great you have college in mind and want him to be completely independent so that homework etc. is not hard in the transition, there are actually *tons* of opportunity for accommodation and adjustment in college. I don't use many, but as I am establishe
  9. Hey all. I'm doing well! Still in college, working, getting some of my writing published. Been feeling pretty good. School is starting in a month and last year I had to go back on antibiotics twice during the school year. I go to a school where there is a large day care/early childhood education program and it seems strep is rampant even in the adult student population. I really don't want to go back on them again this year if I don't have to, so I thought I'd try Olive Leaf Extract. I had taken it before in high school before I knew I even had PANDAS...the naturopath I was seeing at the t
  10. May I suggest, as a person with PANDAS who will have to bear the stigma of whatever thist story turns out to be, that we possibly close this discussion/carry it on in private until we know the details of what was really going on in this young man's life? We are jumping to conclusions and it will not help him, or any of us who are non-violent PANDAS-sufferers, to draw too many connections to a dangerous and violent person (mentally ill or not) before we know if they really exist. Please think about those of us who have to live with this disorder. I have already had to ask all of my fr
  11. Yes! I went undiagnosed for most of my life--didn't know what wrong until I was 19 and I personally feel I was a pretty bad case. But I just finished my first semester of college with a 3.7, Dean's List. First semester was rough about halfway through when strep went around the college and I had a small exacerbation but Augementin 1000 XR twice daily pulled me out once again. I've also got an entry level job in my intended field and a decent social life. So yes, I feel like I'm thriving, PANDAS or no. Not gunna lie, it's a chronic illness and it is very hard to live with sometimes, but I think
  12. You know, the funny thing with intrusive thoughts is that they're not always bad...I think we tend to talk about the bad ones because they're scary, but when in exacerbation I have different types of thoughts pinging into my brain all the time. So I think you could use some negative ones but also some positive ones...anything that would be distracting and random. And make them try do a math quiz while they listen They're always worse in the math test, aren't they ? Also, just thinking about how to express anxiety--perhaps you could have them run in place for a minute or two and then have
  13. This might be a little technology heavy but could you make an audio recording of intrusive thoughts, put it on a cd player or mp3 player for the teachers and have them listen to it for five minutes while they try do a particular activity? I think that's one of the hardest things for non-OCD sufferers to grasp, how completely out of control thoughts can get, just popping in out of the blue. This is great--so glad you're getting a chance to do this! emmalily
  14. Just wanted to jump in--I started going grey when I was seventeen and in my biggest PANDAS exacerbation. It kept going for a couple of years and seems to have stopped growing now. I have a very cool Rogue streak (X-men). Everything I've read has said autoimmune problems or severe stress can bring it on young--bingo. Just my two cents. emmalily
  15. **I'm going to use this doctor's full name so that I am absolutely clear. Chemar, Sheila, feel free to take it down if you're uncomfortable about it, but I felt I needed to use the full name. With all due respect to everyone in this conversation, I need to correct a few things. Possibly you are thinking of the wrong doctor, because Dr. Leckman is in fact a psychiatrist and is very well-versed in childhood OCD. In fact, he is a professor of psychiatry and pediatrics at Yale. He is absolutely not a neurologist. How do I know this? Because he has been the man who has successfully treated me f
  16. Hi all! So I'm looking for an old post where one of you described walking out of the doctor's office with a prescription for antibiotics like getting away with something. I can't remember exactly how you said it, but it was very funny and I would love to quote it for...drum roll please...a COLLEGE PAPER! I finally started college last week! After PANDAS being under control for just under two years and finally getting my chronic migraines treated just a few months ago, it was time to get going. I'm at a local school and am taking an easy case load in case health problems crop up. It's a
  17. http://www.iser.com/sped-college-programs.html This site has a lot of listings for consultants and even a few college programs themselves--although those seem to have a lot of structure and may not be exactly suited to PANDAS. I looked into a few of these different things while trying to get to school while still in exacerbation three years ago, but none of them were the right fit for me at the time. That said, the info was good to have. Hope this helps--glad you can think ahead to college emmalily
  18. Hello! I just wanted to give an update to everyone who has been so supportive in the last few years. Just a refresher: I have likely had PANDAS since I was a kid, but had a major exacerbation while in high school. I was not diagnosed until I was 19 and was then put into remission with a year and half of antibiotics. I'm 21 now. After remission I still had some odd physical symptoms, mainly GI stuff, that wasn't going away. I've fought over the last year to get that figured out, and finally with a great neurologist I've been diagnosed: abdominal migraines. Essentially these are migrai
  19. Hi Nancy, Pre-PANDAS diagnosis I had some accupuncture done, including one where a teeny tiny needle was left in my ear for a week. I did feel better during that time period, but can't say yay or nay that it was definitly the accupuncture. Certainly is something interesting though.
  20. Hi, I sent you one--were you able to see it?
  21. Hi, I was diagnosed at 19 (21 now). I got very sick during high school and can see now that there were times as a young kid that I had experienced symptoms, though not as severe. I don't have tics, mine presents as OCD and sensory problems, and have so far only needed antibiotics (no IVIg, although that would be an option if ever needed). Since diagnosis I have mostly been in remission (a small slideback due to illness). I have some physical symptoms as well (arthritis, GI problems, allergies, sinunitis) that I've treated with diet changes and supplements, but those are still something
  22. Thanks for the info everyone. I'm thinking that it's probably just an indicator that my immune system is still out of whack, even in my OCD has gone away. I've been told I have dysautonomia (which can happen along with autoimmune diseases), and GI is definitely a symptom of that, too. Just wanted to make sure it wasn't a common PANDAS thing to have something like Chron's or UC, too. WorriedDad--that is really strange that it's not quite Chron's any more. I really hope they figure something out for you at the LLMD! Thanks for the insight. LLM--I'm so bad about clearing out my inbox
  23. Hi, A quick update--doing okay after a backslide in the last couple months. Recovered from a resurrenge of OCD with six weeks Augmentin XR. Unfortunately, my GI symptoms that I have had right along have only worsened (and according to tests, it's not because I'm out of balance because of antibiotics nor does it show yeast overgrowth). I've had the rather lame diagnosis of "IBS" this whole time, but I feel like things are getting a little more serious and want to have some more tests on my GI system. So I was just wondering if anyone here or their children with PANDAS have a dia
  24. Were you diagnosed by a rheumatologis as well? After getting strep, 6 weeks later my entire hands swelled up like a balloon. The rheumatologist I had said it resembled ankalong spondalitis although it wasn't that. I think Sammy's case was less severe than mine and he's younger but I don't know how to get in contact with him. I would talk to him. Did he have cardiac involvement too? I mean I went overnight normal 9 year old to overnight ready to be institutionalized. There was never " somethings not right" all along developmentally with me. I d just like to meet someone who gets that. Not a
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