EmersonAilidh

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 just figured that it was more convenient since he had seen me since day one. With the particular exacerbation that I'm going through now I AM pursuing P.A.N.D.A.S. neurologists for the first time & hope to make an appointment soon. I've never had any treatment besides pharmaceuticals, & I'm hopeful that that will change soon. This forum gave me so much hope. When I was ten years old no one knew what P.A.N.D.A.S. was. Seeing everyone here helping eachother & working for progress is so amazing to me. I am so glad that I found this.

"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 fine & woke up experiencing a life altering autoimmune condition. My journey with P.A.N.D.A.S. began in the sixth grade when one day, I woke up twitching. These twitches eventually became so severe that I was placed in the Special Ed department of my school, even though I was perfectly functional otherwise. After years of being told that I had Tourette's, then OCD, then Epilepsy, then Narcolepsy, I was finally told by a psychiatrist that it was P.A.N.D.A.S. Now, about to begin my sophomore year of high school, it hasn't gotten much easier. Although my twitches have become more manageable, the disease is still going strong after all of these years. There is nothing I want more than to make sure schools & teachers understanding of this disease that effects hundreds of thousands of children worldwide, to make doctors equipped to recognize P.A.N.D.A.S. & treat it accordingly, & abovea all else, to make sure that every child with P.A.N.D.A.S. knows what it is that is happening to them. I am one of the few people in the P.A.N.D.A.S. community that writes from the patient's point of view. I am not a concerned parent, I am not a doctor, I am a fifteen year old girl who has been experiencing P.A.N.D.A.S. for five years now. I can tell you better than anyone that there is no more worthy cause. Five years ago when I first started experiencing the disorder, little was known about it. I was misdiagnosed multiple times & put through more unecessary tests & treatments than I could even begin to tell you. By donating to Dr. Cunningham's research at the University of Oklahoma, you would be helping to ensure that no child has to go through what I did. By furthering P.A.N.D.A.S. research through Dr. Cunningham, you would be helping these doctors to form an official diagnostic test you would be making sure that no more children spent years being treated for something that they don't have. By granting the money to Dr. Cunningham's research, you're helping to one day find a cure, or at least a treatment, so that thousands of children with P.A.N.D.A.S. in the future won't have years of their life stolen from them by a disease. Please, make sure that this condition doesn't have the opportunity to do this to other people. Please, fund Dr. Cunningham's research at the University of Oklahoma." Won't let me send that. It keeps saying "Input data invalid! No HTML tags please!" I don't know what to do. :/

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 restaurants. That makes sense. Thank you!

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 tested. I bruise easily, am CONSTANTLY tired no matter how much or little I sleep (although it's hard to say whether that can be chalked up to anemia or my Narcoleptic symptoms. Maybe both?) & when I got blood drawn in September (it may have been August or November. I can't remember exactly.) I could hardly make it to the car because I was falling asleep. I have always had really bad headaches, particularly in the morning but they can come all throughout the day. I'm not sure if it could possibly be related at all, but I had to have an emergency appendectomy when I was eight years old. My pains started in early March & after my pediatrician told us twice that it was just a stomach virus (specifically assuring us that it was NOT appendicitis), my family pretty much told me to suck it up. By June I was throwing up twenty times a day, couldn't walk, was malnourished/dehydrated, & had lost thirty pounds. While my Mom was away in New York for business & my stepdad was at work my Grandma took me to the hospital where they found that my appendix had been ruptured for weeks. I was operated on & admitted for about a week. I don't exactly know when these stomach pains started, but it was at least a year after the appendectomy. They feel absolutely nothing like the appendicitis or any of the recovery pains. I've had an "upper GI" test but it was so long ago that I honestly can't remember what it was for, specifically. All I remember was that it came back inconclusive. I just included that anecdote to ask if that possibly could have had anything to do with the onset of Chron's?? I don't know why/how the appendectomy would be related to my stomach pains, but I always feel the need to include it when talking about them just in case. The pains aren't even really near my scar, but like I said. Just felt the need to include that. [added a few minutes later. That's why it says I edited it.] I've also never had any problems with sores. What kind of doctor would I go to to get tested??

No I have not. What exactly is Chron's Disease?

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 rice, eggs, oats, and coconut (among others). When we started the gluten free diet, we fed her tons of rice and she became much worse. We make pancakes and gingerbread with teff flour and it's awesome. Once you get used to the gluten free grains, they're not too bad and most of them have a lot more fiber and protein than wheat flour. here are three links for my favorite blogs that I follow: http://www.elanaspantry.com/ http://glutenfreegoddess.blogspot.com/p/site-index.html http://glutenfreegirl.blogspot.com/ Thank you so much! I'll talk to my Mom about the food intolerance test. The only foods that I know for a fact make me worse are meat & anything cherry flavored, but not cherries themselves. Those links are so helpful! Thank you again.

Thank you! So you basically just have to avoid packaged "vegan" foods like seitan? (I'm not sure if I'm spelling that right)

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 don't think that I'm willing to give that up for the diet if it's not possible to combine the two. Also, are there any gluten-free cookbooks that anyone could recommend?? Thank you very much.

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!

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 spEd room during any important classroom days. However, at the time I was blessed with amazingly understanding teachers & school faculty. With their help (as well as bio-feedback sessions) I was able to learn how to manage my twitches & compulsions. A year & a half later year my tics had become much less noticeable & disruptive. About two years later, I started experiencing my Narcoleptic symptoms. Which, obviously, I couldn't hold back no matter how hard I tried. Once I started experiencing sleep paralysis & depersonalization episodes in school any normalcy that had been restored to my school life went out the window. Now, about a year after the onset of the Narcoleptic symptoms, they have not subsided at all, although the sleep paralysis & depersonalization have. My teachers have to be aware of my condition because of how serious my symptoms are currently, so there is no holding back for me. Sorry for the anecdote, but I thought that it might help my point. As P.A.N.D.A.S. kids, we often strive not to be stared, pointed, & laughed at, especially in school & especially in the younger years. That being said, one way we try to make that happen is by holding in our symptoms (be they twitches, compulsions, or whatever else) as best as we can in school. This not only stresses us out, but also admittedly makes it difficult for teachers to believe the severity & the genuineness of what we are going through. In some cases such as your daughters, there is no denying what they are going through. But in some cases, kids do so well at holding in their symptoms that teachers often don't notice, which is really a double edged sword because it takes a toll on the child's well-being & as well as hinders the teachers' understanding. I have been dealing with my symptoms for about five years now, so I know better than to think that trying to hold it in is worth it. This is really hard to understand at a younger age when you aren't as mature & haven't been dealing with P.A.N.D.A.S. for as long though. Over time, your daughter will decide which is more important to her; a regular school life, or more consistent, manageable symptoms.

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.

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 least. That's good about your insurance though! KimBallot - My Mom is completely & totally supportive. She doesn't understand it as well as she could though & often yells at me for being unsympathetic, moody, or irritable. I've tried to explain to her that my anger isn't voluntary but I don't think she believes me. It was a psychiatrist who told me that I had P.A.N.D.A.S. about three or four years ago, but I've never been officially diagnosed by a neurologist just because I can't find one that would. This forum has provided me with a list of Texas doctors though! So I plan on getting on that soon. I plan on seeing a new neurologist soon. My main reason for staying with the one I see now is just because I have been seeing him for almost six years now & he's been around for it all. However, I'm finally realizing that that doesn't do me much good when he doesn't believe in my condition. But I am hopeful that I can get a diagnosis & some real help with these new doctors!

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!

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 tests. I also NEVER have ANY symptoms. My throat & neck don't hurt, my glands don't visibly swell, I get no rash, I only know to go get checked when my friends start getting it. My pediatrician said she had never seen so much GABHs. & thank you! That was my main reason for joining. A woman from the P.A.N.D.A.S. network showed me this forum & I wasn't seeing many posts from the actual kids! I figured it was because most of them were younger than patients like me & your daughter so I thought I might be able to contribute something. I understand if this is a little too invasive of a question, but how much does the IVIG cost in all?? Once again, thank you so much!

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.

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.

Thank you for the advice but that's not my last name.

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

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 involved? Do you have to receive it multiple times for it to be effective? & also, I read that it basically just doesn't work post-puberty. Is this true? I plan on posting more & trying my best to understand everything better. I didn't realize that there was even a place like this to discuss experiences & progress until last week, in all honesty. I've been trying to figure out what exactly to say since then. More than anything, I want to contribute as much as I can because I haven't come across many cases that have lasted as long as mine. I'm just hoping to get & provide answers. Thank you. <3