emmalily

Grace: Thank you, I do love to kvetch Definitely makes me feel better. Vickie: Sorry! I cleaned it up so it shouldn't be full now. I don't pay attention to the little status bar on the side there and it gets filled up

The absolutely absurd notion of military school fixing PANDAS just made me laugh so hard. Thank you

Today I had another person subtly suggest that I get a job since I'm not in school right now. From the conversation that followed they were clearly of the opinion that a) I am a burden on my family b ) I do not try hard enough and c) it's all in my head. Even though I explained several times over that I no longer have any PANDAS symptoms because I am on prophylactic antibiotics and that I am currently attempting to deal with the few physical symptoms I have left (nausea, exhaustion, etc). And of course I know that all is NOT TRUE. Also, if I was well enough to get a job I would just go to freaking college. Duh. Anyway, I know lots of your kids are too young to deal with that particular kind of comment, but I know ya'll will understand and I really wanted to share it with someone.

Yay, antibiotics! Even a small dose

Hi, I read how hard it is for your daughter to take her pill and I wanted to offer a little help. When I was little a lot of times if I was afraid of something (or didn't like it) and was resistant to it, if an older kid did it sometimes I would go along to kind of prove to them I was cool and just as grown up too. You sort of get shamed into doing it and figure if the older so-and-so is doing it then maybe it is worth doing. Anyway, I just wanted to offer, I'd be happy to do something for your daughter (like write an e-mail) telling her that I have to take the antibiotics too. Or (I don't know how you feel about tricking her) you could make up a letter and say it's from an older PANDAS kid---it might work to shame her into it. Also, you mentioned bribery, but I can imagine how it would be tough to find a new bribe every day, so I just wanted to share with you how my third grade teacher bribed us into behaving. We all had a big star with our picture on it hanging in the back of the room. Every time we did something good we got a star sticker to put on it. Each time we collected five (or ten, can't remember) stickers we got to go the principal and get a present out of the grab bag she had--candy necklaces, key chains, etc. So maybe something like that, where she can see the stickers go up every time she takes her pill would not only help you not have to come up with a bribe everyday, but would also reinforce that she has to take the pills for awhile. Emmalily

Sorry gotta clean my inbox out But yes, still on antibiotics...I think the plan is to stay on 'til I'm 21 (Apparently that is Rheumatic Fever protocol? or Scarlet Fever? Sorry, can't remember at this point) and then try going off. So a little less than a year from now.

Hi, yes, I would definitely say I write smaller and more slowly during periods where I am having trouble with my handwriting. I don't have shaking hands particularly, they just feel sort of asleep sometimes, which of course makes my handwriting a little sloppy. I know it's worrisome to think he's having to deal with shaky hands, but it's probably a good sign that he has come up with a coping mechanism for it all on his own (pretty strong for 5 ). And maybe, since he knows he can have very neat, tiny writing when he needs to, he can channel that into always having excellent penmanship someday.

For you parents who think you had it but then it cleared up for you, I've read here and on another post like this from a while back, a sort of vague answer that things started feeling better in your "twenties." I was wondering if you could weigh in on whether you think it was early twenties, mid twenties or late twenties. I'm doing really well on my proph abx, but I would like to try going off at some point to see if I have "grown-out" of PANDAS. Just wondering when that might be Thanks for the input.

In my personal experience, my PANDAS-OCD only increases in severity due to how physically ill I am, never in correlation to how much people give in or do not give in to me. After getting on the right combination of antibiotics, the impulse in my brain to complete compulsions disappeared and I was happy to stop engaging in the habits that had formed from them. I think this is very different than true OCD. In that case, it is most important to not give in to OCD because it really could take over... in PANDAS, well, in my case it just didn't work that way. It sounds like a lot of people are afraid their child's autoimmune problem (PANDAS) will turn into a real, full-blooded mental illness if they give in the compulsions and I've got to say, I just don't think that's how it works. I could definitely be wrong, but true OCD does not just develop in a person--it has to be brought on by complex psychological and biological happenings. Certainly, giving in now could could cause bad habits to be created, but bad habits are not Obsessive-Compulsive Disorder, and it's probably a heck of a lot easier to break those bad habits when they're well than to try to rationalize with someone who's brain is literally inflamed. Obviously, no one wants their life ruled by their or their child's OCD, and finding solutions to make it OCD less inconvenient makes plenty of sense, but maybe its not something to worry about making worse. And that also may be individual to each child; some may need the help of ERP/CBT to get through this, and some may not need it.

An alcoholic drinks as a coping mechanism rather than dealing with whatever is hurting inside of them. Alcoholism is, often, an emotional response. PANDAS-OCD is not an emotional response, it is a neurological one. Obviously, no one wants to enable compulsions, but it might be best to remember they are not coming from the same place as a compulsive need to drink comes from. An alcoholic has a choice about how to deal with their feelings; they can drink or they could talk or they could dance it out, or whatever. Somebody with PANDAS does not have so many outlets. Either you ignore your compulsions (which is incredibly difficult to do) or you complete them (which is also incredibly difficult) and neither particularly leaves you feeling better. What I mean, mostly, with this is that maybe you don't have to be hard on yourself about giving in (or not giving in). You're not enabling negative emotions in your child (as you would be by encouraging an alcoholic to drink), you're playing along with their malfunctioning brain. Like I said, obviously no one wants to make compulsions into a habit, but it's definitely different than the guilt you would feel over encouraging an alcoholic to drink.

How was the surgery?

I dropped ten pounds in the first couple months this all started for me (which was a lot on a 4' 11' frame). I think it goes with the territory of having something wrong in the body.

Hi, I just wanted to say that Augmentin 500 2x daily actually made my symptoms worse. About two hours after I took it I would have a little PANDAS "spell" which I think is actually a some sort of seizure where I would feel very ill and the OCD would get very, very bad. Are you noticing a pattern with her attacks? Is it a certain amount of time after taking the Augmentin? A stronger dose worked fine for me. Maybe nothing, but I wanted to give you the info.

Ah, good about the EKG! I'll be thinking about you at 3:15 (or whatever the time difference equivalent is, I'll figure that out haha). Hope it goes well

Sounds like you've got a good plan going with all those doctors appointments lined up! Moving forward! Hope your EKG worked out alright and that you're enjoying sleeping in on break

Hi, yes, I was on Omnicef 300 (brandname) for several months (March-June) last year. I definitely noticed improvement with it, but had to switch to another antibiotic after a small blip in June that Omnicef didn't fix for me.

http://www.pandas-syndrome.webs.com/ There's a few younger kids who talk on here...if you look through the members you can see their ages are listed.

Mm, you'll def have to decide that for yourself, but from what I've read about them they seem quite legit. You never really know, but they do have a privacy policy (at the bottom of the home page) that explains why they are collecting that info, which is to send you further information about their programs. They have a lot of in-person programs apparently, working in hospitals, etc from their parent organization Starlight Children's Foundation.

http://www.starbrightworld.org/default_login.aspx?ReturnURL=%2fhome.aspx This is a social network specifically for seriously and chronically ill kids 13-20 years old. From what I've read, it is very, very safe...They ask for a lot of information but it simply so they can verify that you are who you say you are. I thought some of your kids might be interested in it.

Does he understand how his PANDAS works? Is it possible he is actually afraid of people not washing their hands and then touching his food because he thinks they may have strep on them that is being passed to him? So difficult to distinguish because of the OCD involvement, but a wariness of germs when you have an autoimmune disease only makes sense. For instance, and I assure you this is not OCD-driven, I do use my sleeve to open public doors. I will ask people if they have washed their hands before they touch my food. If someone picks up a fork for me by the tongs I will wash it. It may be overkill (ok it definitely is overkill) but it's at least rational in comparison to OCD.

I actually have had some memory problems while I was really ill. It was mostly a space-case situation where, for example, I would get up, walk very purposefully up the stairs, turn into my bedroom and once there say to myself, "Why did I come up here?" I definitely I had a reason for doing so but darn if I could remember it. It happened to so frequently that it was clearly something besides distractedness. Maybe seizure activity or maybe my brain was just overworked and preoccupied with other problems. Either way it resolves itself in the interim times of feeling good.

iron, calcium, and magnesium can be realllly heavy on the stomach...is that what's feeling worse? Are you eating a lot with these and spacing these out over the day? Taking too many vitamins definitely makes me sick...I really have to space stuff out.

I take 2000iu a day (20yo, 120 lbs) and my doctor did a lab test on me to make sure she didn't give too much. It was just a blood draw to see what my D levels looked like (they were incredibly low haha).

Just wondering, is that how Rheumatic Fever is usually treated?