emmalily

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 third year of college, hoping to graduate in the next couple of years, been living on my own for 1.5 years a couple of hours away from my parents and about an hour from other family. As always, fingers crossed for you all! emmalily 24yo, PANDAS since age 5. Diagnosed at 19.

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 with other ones, like the chicken pox vaccine I got a letter of exemption from my PANDAS doc via e-mail, no appointment needed. Technically I'm not allowed on campus if there's a chicken pox outbreak (yeah, ok, I'm sure the chicken pox police will be around to enforce that one), but to meet I'd rather risk maybe getting the chicken pox to maybe having vaccine reaction. I've done very well with vaccines, only had one bad reaction as a child that spurred on PANDAS symptoms. My doctors are great about planning them, only doing one at a time, and making sure my immune system is not engaged if I'm going to need one. I do need a Tetanus booster soon. I've been putting it off, but I feel like it will likely be fine if we plan ahead. So, like with all treatment, risk-benefit. To me, Meningitis and Tetanus are scarier than PANDAS. Chicken pox, not so much...

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.

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

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 freaking out. My professors are understanding so far but I think I will run out my good graces still. So even though I have been very anti-med for the last four years, I'm ready to take the plunge. 1) What are the best fast-acting, mid-panic ones? 2) How long to the SSRI's take to take effect? 3) Which drugs gave you scary symptoms and how effectively were these dealt with? My psych is Dr. L in New Haven and he def knows what he doing...just would like an idea of what other people have experienced with this. Thanks guys. Oh, and for note: I am 23, female, and 105 lbs.

Hi, I don't know why my messages won't come through. I'll trying sending you one...thanks!

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

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 established with the disability office for accommodations for the physical symptoms I experience, I am familiar with other students who need reading material/formats adjusted, separate testing locations for extra time, extended homework time, etc. And all of these people are very bright, just coping with mental illness, developmental problems, or learning disabilities. Just wanted to let you know this in case knowing that there is some flexibility for the future will take some of the pressure off. Your son always sounds so bright and motivated! I can't wait for the day when you start posting on here that he got in everywhere he applied emmalily

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 time felt like there was a good chance of some kind of infection. I actually did feel better on it, but discontinued at her direction with improvements. But while I was taking it I remember feeling very nauseated and belching it all day. Of course at the same time I was suffering from abdominal migraines that were also undiagnosed so it very well may have been my own system causing the problem. Just wondering if you/your child is able to take OLE without upset stomach? How much are you taking/how often? Thanks so much!

grandfather and uncle underwater/nuclear sub engineers.

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 friends to remain tight-lipped when discussing this news story so as not to draw attention to my having PANDAS. This is very scary for me, and I imagine you feel the same fear for your children's reputations as well.

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 it's possible to do well with it.

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 to stand absolutely still. That feeling of your heart pounding while trying remain outwardly calm, that's a pure anxiety attack right there

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

**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 for PANDAS over the last three years, and did so very well, but when I needed a neurologist for help with a migraine condition I had to go see one of his colleagues at Yale because Dr. Leckman simply is not a neurologist. He has specialized in Tourette's as well, but he is one of the experts on PANDAS. In fact, if you look at the bibliographies of a lot of the papers out on PANDAS you'll see him in there. He works at the Yale Child Study, which as the name implies, is pediatric patients with an assortment of neurological and psychiatric disorders. He is one of the good guys who is fighting for us. I don't want to get into details, but I welcome you to look at his Yale biography and see that he is involved with an NIH PANDAS study. There's no middle of the road for him--he believes and he is doing his best to find the right treatment for us all. Also, he is one of the most caring, intelligent, honest, open-minded doctors I have ever met in my life (and you can believe I've met a lot). He has made himself available to me even when he was on sabbatical or in another country, always responding within a day. He has cared about getting me back to school as much as my family has and even takes the time to inquire about my writing and ask for the websites it's hosted on so he can check it out. He has gone above and beyond for me. Kristin, if you still have questions about why he doesn't think your son has PANDAS or if you want to give him new information that you think supports PANDAS, I would sincerely urge you to contact him. He, unlike so many doctors, in interested in what his patients and their parents have to say and I think he would be open to further discussion, and he would be a great doctor to have on your side if you both find a diagnosis that you're comfortable with. Also, the evaluation I had at Yale was incredibly extensive. Hours long, tons of conversation over history and symptoms, and meetings with a tic disorder fellow and a fellow specializing in CBT, both overseen by Dr. Leckman himself. They took all the bloodwork I had done previously and thus did not ask for any more and factored that into the decision over my diagnosis. Yale's prestige, while it can make them appear very snooty, affords them amazing opportunities, and as someone who is treated by two doctors there and spends more than my fair share of time in New Haven, I have to say it's a fantastic university/hospital. I'm sorry if I've stepped on anyone's toes, I know we all have individual experiences with different doctors, but I couldn't let this slide. We have so few doctors fighting for us and we can't degrade the them publicly like this out of ignorance of the facts. http://childstudycenter.yale.edu/faculty_people/james_leckman-1.profile

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 trial run, and if it goes well I'm looking forward to going all in at a four-year school soon! But in one of my classes I have to write about an ethical issue and I'm writing about the difficulty in getting antibiotics prescribed for PANDAS. So if anyone knows the quote I'm referring to and could possible point out what thread it was in, that would be great. Thanks!

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

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 migraines that happen in the belly. Pain is on the midline, lots of people throw up with them (I did a lot as a kid), can be accompanied by a migraine headache. They have nothing to do with PANDAS as far as anyone can tell--I suppose I was just unlucky to come from a family where migraines are common. My symptoms clearly get worse when under stress (i.e. in a PANDAS exacerbation) so I certainly see a connection between the migraines and PANDAS symptoms, but they are two seperate beasts. The neurologist has started me on some over the counter stuff that's already making a difference. My life, which I've slowly been reganing post-PANDAS, has quadrupled in busy-ness in the six weeks since the migraine diagnosis. It may take awhile to get them under control completely, but I think this doc knows what he's doing (he was also very accepting of PANDAS, which made everything easier). In other news, my parents have just gotten me my first car (thanks mom and dad) because I'm out so much on my own now. I have a job writing sparknotes-like e-books for an online publisher. I've been offered an internship at a newspaper for the summer. I'm registered for college in the fall. It's all crazy overwhelming after so many years of being sick and scared, and I still find myself constantly waiting for the other shoe to drop, but I'm trying to push through that and just have a normal life again. Just wanted to let you all know I'm doing okay! emmalily

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.

Hi, I sent you one--were you able to see it?

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 I'm trying to sort out completely. I honestly don't know of anyone else diagnosed as late as I was (if anyone reading this knows differently, please say so), but there are certainly others in their late teens and early twenties on this board and in PANDAS facebook groups who have had it since childhood. I'd be happy to talk if you'd like to PM me. Good luck with your son!

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...but I just deleted some messages so you should be able to PM me now.

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 diagnosis of Crohn's or other inflammatory bowel disease? Just wondering if this would be unusual or not. Seems like it would make sense to look into this as it also autoimmune, can be aggravated by infection, etc. Thanks for your help in advance! emmalily

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 mother. No, not by a rheumatologist, just by my regular PANDAS doctor. I recently experienced this with I believe was a sinus infection (not sure what bacteria, never got a strep test, but was definitely throat/nose related) where I suddenly was limping because my previously fine left knee was inflamed. That's gotten infinitely better being back on antibiotics. I too, had nothing wrong developementally and not overnight, but over the course of days, experienced sudden, disabling PANDAS. I understand wanting to speak to someone who understands, as I have never met another person with PANDAS in person. Have you asked the doctors who first treated you in '98 if there are any other patients they treated then who are also looking to speak to fellow patients? Obviously, they can't just give you names because of confidentiality laws, but maybe they would have some information on where to look for other, older patients (maybe there is a support group you've never heard of or another online community?). If you do find anything out about a possible group of older PANDAS patients, could you pass along the information? I would be interested, too. I would think you could ask his mother if he would be willing to talk. She could probably pass on the message and your e-mail to him if he was willing.

Hi, no problem. Most simply explained, PANDAS for me looks like a lot of OCD and some physical symptoms (neurological attacks (as yet not quite understood by doctors), GI problems, some movement issues but not tics). My OCD consists of intrusive, repetitive thoughts. There was some evening up and contamination OCD. Lots of food restriction. Seperation anxiety pertaining to my mother was huge problem in my huge exacerbation (I was 17 at the time, had already gotten my license and been out living my own teenage social life and suddenly wanted my mommy). In hindsight I have had several PANDAS exacerbations in my lifetime, one at 5, one at 11, one 14 that rolled into a huge one at 17. That persisted until diagnosis with PANDAS at 19. I'm 21 now and recently had a small one in the last couple of months after going almost a year clear, but seem to be rebounding fine. I've only used antibiotics to treat active infections, and then remained on certain ones prophylactically. We tried to use homeopathy on the symptoms alone before diagnosis but success was limited. I now use some natural supplements in conjunction with antibiotics (probiotics, of course, curcumin for inflammation, etc). I would certainly use IVIg or PEX if I couldn't get the same results with antibiotics again, and would definitely be willing to try homeopathy again. I had one meeting with a CBT therapist during the beginning of treatment and carried out the ideas from that on my own with help from my family. There certainly were plenty of habits to break. We took it very slow and did not have huge success with it until I had been on antibiotics for almost a year. Hope this is helpful.