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Everything posted by EmersonAilidh

  1. Oh. There is a Fort Worth in Texas too, & we have a lot of P.A.N.D.A.S. cases. I was going to send you a list of doctors, but it turns out you're not around here. It is in Texas Oh, my bad. I feel really dumb now, haha. Who are you going to see??
  2. I'm in north Texas in a town called Mansfield kind of south of Dallas & Fort Worth. I wouldn't recommend the neurologist that I'm currently seeing but this is a list of the doctors I know of that deal with P.A.N.D.A.S. Dr. Charles Goebel (diagnoses but doesn’t treat) Pediatric Specialists of Plano 3405 Midway Road Suite 650 Plano, TX 75093 (972) 473-7777 http://www.facebook.com/l/582dc;www.psopkids.com Roger Skiles MD http://www.stonebriarent.com/ Stonebriar Ear, Nose & Throat 5575 Warren Parkway Suite 104 Frisco, Texas 75034 (469) 633 - 9595 Fax: (469) 633 -
  3. Oh. There is a Fort Worth in Texas too, & we have a lot of P.A.N.D.A.S. cases. I was going to send you a list of doctors, but it turns out you're not around here.
  4. Thank you! I will get on that tomorrow. This forum provided me with a list of doctors that are P.A.N.D.A.S. savvy, so I hope to just be able to go that route soon.
  5. I'm fairly confident that I'm not lactose intolerant. I was totally vegan for about six months two years ago & it did nothing for the pain. Nowadays I only eat cheese as far as dairy products go anyway, & that's not often. I'm also fairly confident that the fatigue isn't related to my thyroid. My neurologist was stuck on "IT'S YOUR THYROID!" for quite a while, & two sets of extensive bloodwork in the past nine months have come back completely & totally normal. Right now our main guess is really that it's either anemia (which we're almost certain I have) or just my Narcolep
  6. Don't be sorry! One day it'll stop. I have seen Thoughtful House but I was never too sure about joining because it seemed mostly about Autism & I've never really identified as Autistic even with the P.A.N.D.A.S. We have yet to find a good doctor out here! In all honesty I didn't even think that there were doctors who diagnosed & treated P.A.N.D.A.S. in Texas. The only one I knew of was Dr. Kovacevic. When I started experiencing it five years ago I went to a neurologist & just haven't seen a new one since, even though he is doubtful of the existence of P.A.N.D.A.S. I've always ju
  7. "I care about furthering research for P.A.N.D.A.S., Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci. P.A.N.D.A.S. is an autoimmune disease that attacks mainly the brain of those who have it, resulting in numerous other disorders (namely OCD & Tourette's Syndrome like twitches). P.A.N.D.A.S. is an Autism Spectrum Disorder caused by dysfunctional GABHs antibodies that is unpredictable & often causes unexplainable symptoms of other disorders like ADHD. It typically has an overnight onset, meaning that those of us with P.A.N.D.A.S. went to bed one night
  8. Thank you! So you basically just have to avoid packaged "vegan" foods like seitan? (I'm not sure if I'm spelling that right) Well, if you're going to go seriously/strictly gluten free, bear in mind, gluten is probably hidden in lots of packaged foods, whether made for vegans or not, so the solution there is just avoiding packaged foods or reading labels really carefully. Not sure how gluten-free people handle restaurants, how much is hidden there. I've been strictly gluten-free at home, and avoided obvious gluten sources in restaurants, but haven't worried about little bits in restaur
  9. I looked up Chron's Disease on Wikipedia. I have random spurts of abdominal pains, 10-20 times a day. They last for a few minutes each but they're so debilitating that I can't move during them. I do have frequent diarrhea, but never ever blood. I don't have weight loss or growth problems. I'm 15, 5'4", & about 120 pounds. I think that's pretty normal. As far as eye problems go I used to get styes about once a week from when I was nine until about thirteen, but they went away when I would eat a large mango (vitamin D). It's always been suspected that I'm anemic but I've never actually been
  10. We've been gluten free along with 31 other foods for almost 2yrs now. You can absolutely do the diet vegetarian. One thing I would recommend, if you have a dr. that is willing to help you, is do a basic food intolerance test. It needs to be done through a lab like Great Plains, Alletess, or U.S. Biotek. This test will check your IgG response to about 96 foods rather than the traditional IgE test that an allergist will run. The reason I say you should do this is that you may have an intolerance to a food that you will be using to substitute for your gluten. My daughter is highly intolerant to
  11. Thank you! So you basically just have to avoid packaged "vegan" foods like seitan? (I'm not sure if I'm spelling that right)
  12. I have had stabbing pains in my abdominal area every day for years now that nothing seems to help. I had always figured that it had something to do with an emergency appendectomy that I received about seven years ago until I read about "nonspecific abdominal pain" being a symptom on Dr. Kovacevic's website & talked to another girl from the forums about it. Has anyone had success with gluten-free diets? & also, is there any way to maintain a healthy vegetarian gluten-free diet? I haven't eaten meat in almost seven years (I also don't drink milk & I rarely ever eat eggs) & I
  13. There's no need to thank me! I wanted to join this forum to help when I saw that there weren't many patients posting. I'm more than happy to help!
  14. One of the biggest problems with me, personally, is not vocalizing my symptoms in school. Whether or not we can "hold it together" all depends on how severe a particular exacerbation is & what symptoms we are experiencing at the time. For example, about four years ago I was incapable of holding it together for even a few minutes during my sixth grade year. These were mostly vocal tics, motor tics, & compulsions. As stated, if I were to try to hold back it WAS like "opening a flood gate" the second that I got home. My tics & compulsions got so disruptive that I was placed in the spE
  15. I thought that it was good overall but also that it focused on JUST compulsions & tics too much. I understand that adequately & fully describing P.A.N.D.A.S. would take much longer than a half hour show though, haha.
  16. Peglem - I was doing well for a few months but I just recently took a nosedive. The only thing that I can think of is that it has something to do with the weather, because Texas summer has kicked in, which means 103 degrees every day. However, my twitches have actually gotten better. I rarely have vocal tics anymore, & when I do it's just a "bark" & nothing too terribly disruptive, & most of my motor tics have moved into my hands, neck, & legs. As far as other symptoms go, not so much. I've been experiencing Narcoleptic symptoms for over a year now, which is scary to say the le
  17. I know that you could just post links to the other pages in the descriptions of your page, but besides that I am not sure. I'm actually going to go link to the other pages right now. Thank you for suggesting that!
  18. Thank you so much! That was so helpful. The neurologist that I have been seeing for about five years now will NOT be swayed on the existence of P.A.N.D.A.S. so I don't think he would order that. :/ I haven't had any actual treatment, just lots & lots of pill regimens. Medication free for about six months though! So very happy about that. I'm sorry to hear about your daughter! I'm fifteen too. I've had some pretty bad compulsions, one minor twitch, & a strep problem as far back as I can remember so we speculate that I got it really young too. I've only ever had two negative strep t
  19. I've seen the Pepsi page, too. & that's what I was trying to do. Just make one broad, general page for it. The PANDAS foundation one seems fairly active but one seems more geared towards letting people know about it than actual discussions about it & one has no members.
  20. I found three doing that. I hadn't seen those though! I still figure it's a good idea to add the dots just to separate it from all the groups about the bears, haha. Plus, if you just search "pandas" without the dots you're automatically directed to the "Purple Pandas ARE HOT" page. Well, I am at least.
  21. Thank you for the advice but that's not my last name.
  22. I was pretty amazed when I realized there were no P.A.N.D.A.S. groups on FaceBook so I made one. http://www.facebook.com/#!/group.php?g...5625&ref=ts I figured that it would be a good way to reach out & find a lot of people since FaceBook is so massive. It could also help lead people to the valuable information on this forum. Please join & spread the word. <3
  23. This is my first post on the forum. My name is Emerson Ailidh & I first started experiencing P.A.N.D.A.S. about five years ago. I am fifteen now, about to be a sophomore in high school in Texas. I apologize up front for my ignorance to a lot of what is talked about on the forum, this is my first time ever reaching out & being able to talk to anyone with experience with my condition. Mainly, I wanted to ask about this new IVIG treatment. I first read about it on Dr. Kovacevic's website a few months ago, but I still have some questions. How available is it? Are there any risks invol
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