emmalily

Don't want to discourage anyone, but I had this one last year and seemed to have a couple rough weeks afterwards. Not sure if it was related, but maybe something to keep in mind if you decide to get it.

This may sound funny, but if we have the opprotunity to, are we allowed to recruit for Dr. Cunningham using her name? Not using her name like pretending to be her haha, but if we have any possibility to announce her name and where to donate, that is totally legal, correct? Sorry if it's an obvious answer!

http://yellowpagesforkids.com/ They go by state. I'm not even half-way through the resources in my state and I had to share it with you guys. They've got school advocacy (people are actually listed saying they will negotiate PPT/504 for you), parent support group, Saturday tutoring programs. Just seems like a good back-pocket source of info. Hope ya'll can use some info from here!

http://www.chronicbabe.com/articles/846/ Thought this was an interesting perspective on dealing with rude doctors. Kind of let me exhale over dealing with my ped, haha.

I just wanted to say that since so many of you have written to me, asking me to write about what PANDAS feels like, I've decided to do so. I'm also willing to answers questions on what it feels like. This writing is going to be posted at a place-that-shall-not-be-mentioned-on-this-forum. PM me. To the mods: Sorry if this breaches the not mentioning other sites rule. I'm hoping it doesn't. Please take this down if it does!

Mom2--This is off track but definitely watch LOST from the beginning! It's just...awesome. But yeah, I have netflix, I defintely do watch tv shows like straight through like that. Since this all started I have watched all of Dr. Quinn, The Nanny, Roseanne, LOST, The OC, Beverly Hills 90210 (original, the new one is weird),Grey's Anatomy, House, Sex and the City, Big Love, Defying Gravity, Legend of the Seeker, Skins, Ballykissangel, Greek, Kyle XY, Gilmore Girls, a lot of ROME, Sons of Anarchy...I know there's others, just can't think of them. I'm trying to make a list for fall. So far I've just got Deadwood. Any suggestions, anyone? Bones and Dexter look interesting, but I'm not so sure. Unfortunately, at all the schools around here you do have to pay to audit and it's not much reduced from regular tuition LLM--definitely keep me up to date on if you find anything. I think I could have some things to say to parents about my experiences being a sick teenager (especially dealing with schools). Vickie--Yeah, once things get a little bit better I think I will try to find a job like that. I just feel really guilty being a hassle to people (which is probably my PANDAS OCD talking, but still). I'd want to be a little more confident that I might have a chance at staying for awhile. mati's mom--You're right about the online discussions being good alternative; the program I'm looking at has an online study group in the spring before final exams so that would be something to look forward to. Thanks for your support everyone!!!

So, since I'm still dealing with getting PANDAS under control, I'm not going to being to school again this year. My goal right now is to stay healthy for four months straight (the length of a semester) so I can feel pretty confident when I do go that I probably won't get sick mid-semester and lose all my tuition money. The problem is, I'm going to be 20 in November and this would have been my sophomore year in college. I've been home since my junior year in high school. I only got diagnosed this past December, so I feel like this year will be a little different since at least I know what is wrong. I'm going to try to do some classes from an external degree program (if I'm accepted) so that should take up about 20-30 hours a week. But I gotta be honest: I'm so bored. I've been bored for three years now, and even with the possibility of doing some coursework (on my own, so it won't even be like an exciting class discussion) I know this year is going to be boring AGAIN. And weirdly, that's my biggest problem right now, facing another boring year. Which, I have to say thank God/the universe/whatever because this time last year my biggest problem was losing my mind. But that doesn't exactly fix this situation. I'm afraid to get a job simply because I don't think I can be reliable yet. I feel like I would miss a lot of work and while I'd be ok with being fired for that, I don't want to be hassle to someone who will hire me and two weeks later have to hire someone else. Same with volunteering; I'd love to go back to a barn where I volunteered freshman/sophomore year with disabled riders, but they really need people who can commit. For the same reason, I'm afraid to commit to any lessons (like ballet, I'd really love to do ballet) because they're so expensive and I don't want to lose money. I'm looking for a chronic illness support group, so hopefully I'll have that at least. It's really lonely with all my friends so far away at college. None are within an hour and I'm still learning how to drive without anxiety (it's a process ). So I guess what I'm asking for is some support in being optimistic about this year and maybe a few ideas on how to keep myself busy. Here's what I'm really trying to convince myself of, and let me know if you agree: As soon as I start feeling better I'll go back to school and then I'll be out into a job and then maybe have a family and it'll probably be another thirty or forty years before I really just have a lot of time to sit back, read good books, take good naps again. I'm really trying to look at this time as if maybe it's a gift of some sort, but, dang, it's hard when I so badly want to be at college. Thanks in advance for you input. And also, just a shameless plug for myself, if any of you in CT want to give me a job understanding the whole PANDAS complication I would love you forever! I'm a great typist

Sounds like a possible case of PANDAS to me. Funny ending; kind of puts things in perspective. http://willigocrazy.org/Ch08e09.htm

Mmm, well this Abdominal Epilepsy is really more problems with the gut that often diagnosed as IBS but are actually being caused neurological things. I know a lot of people here on the boards have kids with stomach problems and I just wanted to know if they fit the outline (summed up really well in the e-how article) for Abdominal Epilepsy as well as I do. It might be a link for the GI trouble Dr. K is investigating with PANDAS patients. Also in the articles it mentions dietary changes making this better, which a lot of us have seen, going gluten free and such.

That's really interesting mkur...sounds like it would explain tics, right? But does it cause the IBS symptoms like abdominal epilepsy?

Just adding this article too: http://www.tarunaoils.com/articles/abdominal-epilepsy.asp

Hey, this sort of stuck out to me, especially the pressure in the chest, the episodes lasting an hour or so, and the exhaustion following the gut pain. Let me know what you think. Also, I've heard it can be linked to neurological disorders so it would seem to fit with the PANDAS. http://www.ehow.com/how_2188449_have-abdominal-epilepsy-autonomic-seizure.html http://www.meridianinstitute.com/abepilep.htm http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1856820/

ideally, the people who love you would be conscious of the things that bother you (with or without a diagnosis of something). but ideally is reality, and reality is that people who don't have food things just don't get it, aren't ever going to get it, and try as they might to be sensitive, it is ultimately going to be your responsibility to adjust to their "norm" if you don't want to start fights. believe me, i know. there have been some actual arguments in my family because of the cooking situation and eventually you might just have to drop it and just learn how to eat on your own time. for instance, for several years when i started my restricted diet, my family would all go on vacation together and cook barbecue. they constantly wanted to cook for me, so as not to leave me out, but then refused to follow the rules to keep me healthy (seperate utensils, no seasoning, not being on the same part of the grill as the seasoned food, etc). they didn't do it maliciously, they didn't have the same consciousness of the food that i did because if their chicken bumped into the other chicken they weren't going to be the ones who were sick for the next three days. it's been about fifteen years now and they stillllllllll try to pass me the whipped cream/butter/rolls. now all my meals are cooked earlier/later. it works out fine. in fact, after it was worked out, it's turned into a bit of family joke. no hard feelings, just understanding all the way around that i have to work it out for myself. good luck with the salads

So, I'm seven days late for my period, which has only ever happened once (with new medication) in seven years. Should I blame the the switch from Omnicef to Augmentin that I did a couple of weeks ago? I'm definitely not pregnant, so that's not a worry, it's just that my hormones seem to be going wonky waiting for the period and it's making my PANDAS stuff come on stronger. Hoping for some feedback if anyone has any...all the info I have found online has been about antibiotics reaction with the pill and late periods....nothing with just a an antibiotics and late period. Thanks.

I was just wondering if anyone is seeing in themselves/their kids weight gain on the antibiotics? I was taking omnicef and now augmentin. I gained ten pounds on the omnicef with a huge stomach bloat (honestly, I could have been mistaken for being five months pregnant). Since switching to the augmentin, the bloat went away in the first two days, but I'm not losing the weight. I'm moving more than I have in years since I feel so much better, and I'm eating better too. It's just kind of frustrating. All my clothes are still fitting and my family doesn't see any sudden rolls haha. Is it some sort of retention? Sorry, hope you all don't think I'm superficial, especially with all of the other problems pandas causes. I'm just wondering if this is the antibiotics fault or if I need to up the pilates. P.S. So happy we got the Pepsi grant!!!

Do you notice that the RLS-night happens at the same point in your cycle each month? I had seriously pain in my legs about 7-10 days before my period for awhile. It would only last for about 24 hours. It went away with time (I think I was still healing from the latest exacerbation). Definitely could be hormonal, if iron supplements helped Stephanie. Are you anemic?

This is just something I found that made me feel a little better about my chances of completing school. The hope, obviously, is that PANDAS can be fixed before going off into the world, but this is a good option too. Thought you all might like to read. http://www.msnbc.msn.com/id/32863895/ns/he...re_health_news/ http://www.insidehighered.com/news/2007/11/08/chronic http://snl.depaul.edu/WebMedia/StudentReso...CIIhandbook.pdf An excerpt from the "Inside Higher Ed:“One of the biggest problems [students] have because of the nature of chronic illness is this waxing and waning problem. They may start the term feeling they can manage it and a couple of weeks in they have a relapse or a hospitalization,” says Lynn Royster, the director of the initiative. Students come to the program – which can be completed entirely online or on campus (or through a combination) – with a whole range of conditions, including cancer, chronic fatigue syndrome, diabetes, epilepsy, heart disease, fibromyalgia, lupus and rheumatoid arthritis. But, Royster says, “Almost all of them have the same kinds of needs. And almost all those needs are not met by traditional disability offices, because what [chronically ill] students have is the unpredictability.” Traditionally, a disabilities officer will work with a student at the beginning of a semester to figure out what accommodations will be needed – a note taker or books on tape, for instance, Royster explains. “With our students, it changes all the time. We get an occasional request for a reader, but most of our requests arrive because a student has fallen behind or had a relapse.” Sidenote: Dr. K is in Chicago, too.

so i've been having a little ramp in symptoms the past couple of weeks and am currently switching my abx around. fingers crossed it works quickly! but i noticed that a lot of the nausea and dizziness came on like motion sickness, with that woozy feeling and the sweats. and it comes on a lot when i've moved really quickly. so i've put my sea sickness bands on and the dizziness has seriously reduced and the nausea is gone. thought you all might like to have it for an idea if/when you/your kids are having some stomach/dizziness problems.

Yep, in Hartford. Well, I think he must have some information on PANDAS because Dr. Leckman at Yale (he does the big PANDAS assessment) is the one who recommended Tolin to me in case I wanted to go on with CBT. I'm not sure how great his understanding is, but from the way Leckman talked about him it seems like he does at least know about PANDAS.

I'm doing ok. Slow progress, for sure. The pollen has been horrible, of course. I've got two things left on my list of "scary places" to deal with the left-over OCD habits: classrooms and public transportation. I'm taking a class right now and have made it to a couple but still working out how to stay for the whole hour and 45 minutes. Probably should have picked a shorter class haha. And small public transport: elevators. Doing them like a pro now. Just gotta work up to the extended, travelling transport now Yes, abx indefinitely. The opinions seem to be stopping around 21 so that'd only be another year and half for me. Dr. Leckman recommended the CBT with Dr. Tolin from the show, and I had one CBT meeting with a woman in Dr. Leckman's office (Dr. Emily Anderson) which is where I made this list I'm working down. I've done 10 out of 12 things so seems like it's worth it...considering Dr. Tolin still. From The OCD Project he looks like he would be a good doctor, I just wonder if he treats PANDAS OCD differently or still tries to treat it like an emotional response (which I find to not be very helpful).

Also, Dr. Tolin is the CBT guy at the Institute of living that Dr. Leckman recommended for me, so I bet Cody has had some PANDAS information.

I'm watching it right now! I keep thinking he is a total panda...he has the same compulsive hand movements that I do. I'm sure there is a way to contact them on the vh1 webpage.

Yes, it's definitely a little scary. But it was kind of worth it for me, having PANDAS OCD, to hear from other people who are dealing with the same sort of thing, especially to see the young guy who has had to be homeschooled recently. Definitely made me feel better to see even another person is experiencing the same thing.

I just saw The OCD Project for the first time. It's a reality tv show following six OCD patients through residential treatment. It's a bit cheesy(of Dr. Drew caliber), but there is an 18-year-old on there (which makes me feel a bit better) and the rest are adults. Just thought some of you might be interested.

I was just wondering if anyone had thought of doing something like PANDAS wristbands (like the LIVEstrong ones) or something of the like. It could be a way to raise a little more cash for Cunningham's research or something, and would raise awareness at the same time. And maybe for some of the kids it would open doors for them to talk to their classmates about it if they get permission to sell them at school, while also associating something fun with PANDAS. I did look it up and they go between .15 and .99 cents per band depending on the quantity bought. Thoughts?