EmersonAilidh

Dut- Never heard of autoimmune pancreatitis or GERD before! No jaundice or vomiting problems over here so that doesn't sound very fitting personally, but I hope your kiddo's doing well! Best wishes to all of you!!! Also. Just throwing this out there. I do know how to spell Crohn's. I'm not too entirely sure why I put "Chron's" so much. Sorry. :/

Meg's Mom - Glad to hear your daughter's doing well! Did she end up having Celiac's Disease or just a general abdominal problem? Sorry she's had to go through this. <3 Worried Dad - How would I go about getting tested? I had an upper GI about four years ago but that was mostly looking for complications they thought had arisen from an emergency appendectomy about seven years ago (none were find. Although they did find out my metabolism is four times quicker than usual. Yipee! ). Besides that I've never done any other intestinal/abdominal testing & wouldn't even really know how to go about it.

First thing I noticed was them asking him about the GABHs! Glad that P.A.N.D.A.S. was mentioned. & that is really interesting! Lots of P.A.N.D.A.S. kids seem to have problems with candida, IBS, & other stomach problems, but I think that abdominal pain caused by more defunct antibodies would be totally logical (not to discredit their diagnoses, but to maybe help shed some light on the unexplained "nonspecific abdominal pain" so many of us deal with).

Momto2pandas - Do you have a link or any way of finding that study?? I'm interested! Fixit- Haha, thank you! I really do wish that I could do something to help kids with P.A.N.D.A.S. understand what's happening to them better though. Lord knows I respond better when I'm talking to someone who understands as opposed to just another doctor. & yes, I am! I start dual enrollment at the local community college the year after this upcoming one, actually. So excited for that! I stress myself sick to strive in school. I finished my freshman year with a perfect 4.00000 in all advanced classes. Grades are a HUGE anxiety factor to me.. Also, what is a popcorn sound?? Tpotter - My main intention is seeing him is just to ask where to go from here, but I'll be sure to add this to my little list of questions! Let me know what he says when you talk to him though! I have a huge bloating problem & have responded extremely well to my new gluten-free diet. I have almost no symptoms of Celiac's Disease or Ulcerative Colitis though, which is what led me to look at Chron's. The Chron's symptoms that stuck out most to me were the eye problems, consistent diarrhea, & fatigue. I haven't been to any intestinal doctors in about four years, so I hope to see one soon.

Is it common to see multiple autoimmune dysfunctions in one person?? I've been doing a lot of research regarding the "nonspecific abdominal" pain so frequently seen in P.A.N.D.A.S. patients that I myself have dealt with for years. One of the things that I looked at was Chron's Disease. I think that it resonated with me mostly just because it was another autoimmune disease, but the vast majority of my symptoms could be explained by it. It got me thinking. Chron's (Anti-Saccharomyces cerevisiae antibodies) & P.A.N.D.A.S. (GABHs) are chalked up to two different antibodies, which (from what I understand) respond to yeast (Chron's) & strep (P.A.N.D.A.S.). Is it at all possible (or maybe even likely) that two antibodies could be functioning improperly?? Obviously I'm no doctor so I don't understand completely, but from what I can tell antibodies are produced in B cells/lymph nodes. Could getting frequent, severe strep impact the way that those lymph nodes produced antibodies at all or is that something that starts at birth??

Called just now & got the appointment rescheduled for JUly 20th at 10:30 AM. Now I'm just waiting for someone to tell me he's going to be on a conference that day, too.

Where is Dr. B??I'm seeing Dr. K soon but I live in the Fort Worth area & I'm trying to find a more accomodating doctor a LITTLE closer. Hope you're doing well! Might be a little too much to ask, but who was this?? Sounds... Moronic. The entire reason that my Tourette's diagnosis was thrown out the window & that we started searching for alternative problems was because my twitches had a three month remission at one point. That's what led us to believe that it was P.A.N.D.A.S. in the first place. Does the word exacerbation mean nothing to him??? Also, it's a bit odd that Texas has a fairly high incidence of P.A.N.D.A.S., comparatively speaking (although I really think it's just because we are so big), yet it's incredibly diffifult to find a doctor in the DFW area who isn't totally RXhappy. -_________-

This makes me so happy!!!

Happy to hear about your sons doing well! I've been to three "Camps" (second grade, third grade, & sixth grade) & loved them all. The first two were before I was diagnosed, when my tics were virtually unnoticeable & my compulsions were maneagable. The sixth grade one, however, was when my P.A.N.D.A.S. was at it's absolute worst. Needless to say, everyone involved was a little more than wary to be sending me off. It went great though! It's amazing how understanding people can be in a non-school environment like that. I'm sure your sons will have a great time! Best wishes to you. <3

Thank you!! I think the lack of understanding from my family & schools kind of forced me to become self-sufficient. At first it made me feel alone but I know that it's a good thing now! It's funny that you brought that up because one of the things my Mom always makes me do is order my own food, hahaha. Also, I've been making progress with my Mom! I just sat down & explained what I felt that she didn't understand about P.A.N.D.A.S. when she had a friend over. It was either last night or the night before that. I thought that the friend's curiosity (after seeing my Pepsi Refresh posts on FaceBook) was a good way to bring it up. It went well! It's the first time I've brought up my attention problems to her. I think that part is the hardest for her to grasp because I've done so well in school, stressing myself sick in the process -____-, but I told her that I hadn't been able to finish a book in almost two years now & I think that made it hit home a little more since I used to love reading. I was also able to bring up my Autistic tendencies for the first time. My half brother is severely Autistic & mentally retarded, so I think his behavior is what she associates with Autism, which made it hard for her to grasp my situation initially. She's also agreed to help me cook now that I'm on the gluten-free diet! She never ever cooks. Always wish that she would though. I bought a gluten-free vegetarian cookbook the other day & told her that I was going to need help & she seemed pretty receptive. I am happy to say that things are definitely going better than last week.

Got a hold of Dr. K himself, who told me to call back tomorrow at ten to reschedule. :) & I got the recipe! Just haven't tried it yet. We are in desperate need of a trip to the grocery store, hahah. Went out to a restaurant for the second time since cutting out gluten tonight. Didn't go so well. It's hard explaining to people what gluten even IS, much less making them realize just how many foods you have to avoid. "Well, can't you get fried okra?" "No, that's breaded." "That has gluten in it too??" "Yes, Dara." Hahaha. I'm starting to do better though. It's getting less difficult to pick out gluten-free foods. The first time I went out to eat I actually asked the waiter "Do you have anything gluten-free??", just got an odd stare in reply. Know better than that now, haha.

Called back a couple more times... Still just answering service. :/

Called the office earlier today & got sent to an "answering service". They said that Dr. K's office opens at 1PM today, so I'm going to try to call back in half an hour or so. I'll get back to you on that if they can't just reschedule me, Phasmid. Thank you so much! So generous. <3

I don't NOT wanna be a doctor, I'm just not sure what I want to be yet! I think I want to be an editor for a publishing company. It sounds strange coming from someone who types "wanna", but I love language, haha. At the same time though I also find a lot of random things really interesting, like parasites & pharmacology. Who knows. I'm infinitely curious, there's no doubt about that, so I'll be able to pick something & be happy with it when the time comes. Oh, so this is about what YOU want! I see how it is! Hahaha, that made me laugh.

Thank you!!! You are all so sweet. Seriously so encouraging. Thank you all. You guys make me happy when I'm feeling blue.

Thank you!!! You are all so sweet. Seriously so encouraging. Thank you all. You guys make me happy when I'm feeling blue.

I don't NOT wanna be a doctor, I'm just not sure what I want to be yet! I think I want to be an editor for a publishing company. It sounds strange coming from someone who types "wanna", but I love language, haha. At the same time though I also find a lot of random things really interesting, like parasites & pharmacology. Who knows. I'm infinitely curious, there's no doubt about that, so I'll be able to pick something & be happy with it when the time comes.

Thank all of you!! It's so nice to hear all of this. My Mom is convinced I'm gonna be a doctor.. But I think I've spent enough time in hospitals. XD Maybe though! Who knows, really. & I'll call back tomorrow. It's 9:30 here, I don't even know what time it is in Chicago. Thank you all for letting me know! I would have been SOO disappointed but now I can get it sorted out before I go. &, by the way, I do love my cyber Moms on the P.A.N.D.A.S. forums! Everyone always hears me go "Well, on the forum they said.." & I have to explain how often I'm on here & how great everyone is.

Yes, my Mom is going!!! I am VERY excited about that part. I hope Dr. K can help her to understand what a broad disorder P.A.N.D.A.S. is. So much more than OCD & tics! & I don't know about the conference! :/ My appointment is at 4 PM, not in the morning... I emailed him two days ago, he replied telling me to schedule an appointment with his assistant Diane, & she said he was going to be there that day. Thank you all so much!! I'm getting my entire medical file sent to him.. Thank God for Cook's Children's Hospital being so accomodating. I have a pretty hefty file, hahah. That way he'll be able to know as much about my history as my neurologist in Fort Worth. I'll be sure to update you all as soon as I get back from it!

Have an appointment for July 16th while I'll be in Chicago. Scheduled it all by myself, got the precertification from the insurance company all by myself, & I'm getting my records transferred all by myself. :) Needless to say, I'm feeling a little proud of myself. (Too many "myself"s in this post...) I'll let you all know how it goes!! I am beyond excited to see him.

I don't wanna break your heart! I hate how everything I post ends up sounding negative somehow.. I am a generally happy girl. I've dealt with my P.A.N.D.A.S. for years. Ostracization is something I am used to, haha. I know I'll eventually found my match! Well, I already found her. My bestfriend's name is Alyssa but she moved to Indiana a few months ago. We used to be together everyday. I think that's part of why I feel so lonely this time around, I'm not used to dealing with exacerbations on my own. Being on my own is what made me reach out to the people on this forum though! So I guess there was an upside. But, this one will be over soon enough! They all end eventually. I'll check out that book! Thank you for the recommendation. I hope your daughter's doing well! Feel free to talk to me anytime.

Being social takes a lot of work from us. This is the summer going into my sophomore year, & I can count the number of times that I have left my house on my hands. When you think of Autism disorders you more than likely think of children that don't do much talking, when really a lot of us have a tendency to BURST into a random subject where it's hard to STOP talking. I was with a few of my friends right before summer started, only one of which knew about my P.A.N.D.A.S. since the other two were relatively new to my life, & someone made a comment about the volcano in Iceland, which led to someone making a sarcastic comment about Greenland. Some little bell in my head went *BING* & I was off. For fifteen minutes without a SINGLE response from anyone else in the room I blabbered about Greenland. Erik the Red, their financial independence from Denmark, how their fishing industry is failing... It was only when I stop to took a breath that I saw the looks on everyone's faces & immediately started crying (which did not help me look any less crazy..) Lately when my parents (Mom & stepdad) ask me if I have plans you can see the hope in their eyes that I'll say something besides no, & I can see the disappointment when that's all I say. My little outbursts definitely don't help in the "making friends" department, especially at fifteen years old when I would rather talk about blood parasites than Justin Bieber or whatever else. While it definitely isn't easy living with P.A.N.D.A.S, I hate seeing that look on my parent's face. I can't imagine what it must be like for our parents to see us like this. I hope your daughter has a good time at activity camp, & I wish the both of you well. Eventually she'll get to decide whether it's better to be socially awkward or not social at all (I'm leaning towards not social at all, personally), but as long as she has you there to help her through it she'll be fine. <3

Do they happen when he's really tired?? Going to bed/waking up?? Hypnagogic hallucinations are a lot less scary than schizophrenia or other hallucinatory problems. Best of wishes!

Thank you both very much! I'll look into that. <3

Suzan - Yes, I am gluten free but I don't have Celiac's. I'm hoping to see a gastroentonolgist soon. In all honesty my abdominal pain symptoms sound a bit like Chron's but I'm hoping for something less severe. & all of those symptoms are really, really widespread. A lot of them apply to me but a lot of them don't at the same time. Is there a test for Candida??