emmalily

Just want to preface this saying this is definitely not a recruitment to another website, but an idea about how to stay in touch better. So EmersonAilidh and I were talking the other night about how great it would be to have a support group for the teenagers/young adults with PANDAS. I did a little research and found a way people are doing video conferences on Paltalk with up to five users at once. I haven't tested it out yet. You can create private chatrooms (one person invites the other four in. No one else can see the chat). I've looked around the web and this seems as reputable as any other chat service (AIM, MSN, Skype). You don't have to download (all in browser). Of course, using real names/giving details is never secure online, but I think we could easily have conversation without that. The website, Paltalk, is a chatroom site. If you kid made a screenname to do this they would have access to any other chatroom on that website, just want to make that clear. Just throwing it out there. Also might be fun for your parents to get together. Teens aren't the only ones who can use technology

Dr. K is interested in the possibility of an adolescent/adult onset of PANDAS symptoms--he is who I started off with and is very willing to discuss the possibility. They could start by shooting him an e-mail.

I did homebound twice before pulling out all together. I had a tutor for one hour a week in each main subject (electives and gym they had me cover on my own). They are supposed to get you a tutor for each subject but the second time I had homebound they were having a budget crisis/teacher's union problems (i.e. some sort of BS) and could only get me one teacher for physics/chemistry/pre-calculus and he was not qualified for teaching any of them. Before that I had had my actual teachers (from the classes) or department heads tutor me. So if you do it try to get them to give you the best tutor they can find. And make sure they make a real schedule for these teachers so that you're actually caught up before you return to school. It's a great program, but hard with high school and all the different classes. We can definitely talk more about it if you'd like to. Sorry about those headaches, too

I use Dr. Leckman. PM me (or my mother, Kay, if you want a parent's perspective). I've so far had a very good experience with him.

I started using curcumin capsules from my ND back in January right after I started antibiotics. I noticed another huge improvement with them and only need to take aspirin maybe twice a month.

momto2, that's a great idea for teens and parents to get in touch. here's an article i found about skyping several people at once. not sure how it works but maybe someone here will know. http://gigaom.com/collaboration/skype-beta-supports-group-video-chat/

There have been so many posts about rage and resistance in PANDAS kids lately that I felt I really needed to say a couple words on it. I feel like, in a lot of these posts, hurt feelings/fear on the part of the caregiver (you great moms and dads out there) are keeping you from seeing what is actually going with the rages and resistant behavior in your kids. So many of you have written to me, asking me what it was like in my head when I was feeling those things. I have tried my best to explain it but I think I've come up with an even better example now. PANDAS, as we all know, causes a physical (temporary, it appears) problem in the brain. But we can't see it, so it's hard to think of it as an "injury." And that's not unusual. If you have done any reading on invisible disabilities then you know often the biggest challenge for people who suffer from them is to have others believe that something is wrong even when they're looking perfectly healthy. But it is an injury and I think it would help to think of it in terms of any other head injury. Have you ever taken a really good knock to the head? Even had a concussion? You don't feel quite right afterwards and if it was a really bad knock you probably don't behave quite right afterwards either. In fact, the symptoms of a concussion are: Passing out. Not being able to remember what happened after the injury. Acting confused, asking the same question over and over, slurring words, or not being able to concentrate. Feeling lightheaded, seeing "stars," having blurry vision, or experiencing ringing in the ears. Not being able to stand or walk; or having coordination and balance problems. Feeling nauseous or throwing up. and the symtoms of post-concussive syndrome are: Changes in your ability to think, concentrate, or remember. Headaches or blurry vision. Changes in your sleep patterns, such as not being able to sleep or sleeping all the time. Changes in your personality such as becoming angry or anxious for no clear reason. Lack of interest in your usual activities. Dizziness, lightheadedness, or unsteadiness that makes standing or walking difficult. (both taken from WebMD). Any of those sound familiar? Having PANDAS is like having a concussion that never goes away. That's what it feels like on the inside. So I think that's important to remember, when we, both patients and parents, get frustrated with this illness. Would we get so angry if we could see the lump on the head? Would we get so frustrated with ourselves or our children if we knew it was a just concussion that was clouding their thoughts for the time being? Would we expect someone who has gotten hit in the head to be making sound, responsible decisions? I think you all best know your child's personality, and if they were never resistant or angry before this whole PANDAS mess started for them, I think it's safe to chalk their current resistance and anger to a personality change caused by the disease (which many of the doctors do list as a known symptom). So if it doesn't seem like your sweet kid when they're cussing their minds out at you--it probably isn't, it's the disease. Even if they're hurling the most hateful, terrifying accusations at you. That just doesn't seem to be unusual for head injuries. Try thinking of it as a concussion and go on making decisions for them as if they had a bump on the head (easier said than done, I know) until you can see their own personality come back. I really wish for all our sakes this was as easy and fast as a bump on the head on the head to treat and recover from. In the mean time, I hope this idea helps you.

Yes, I did this a lot as a kid (even read this way). Maybe it is PANDAS thing. Don't some people use it as a natural anti-depressant?

Is it possible that his OCD is keeping him from making a sound decision? He may be having intrusive thoughts about fears of an ivig procedure or something of the same sort that it is keeping him from being able to look at the situation objectively.

Hi Josey, My symptoms made me non-functional. I literally just sat all day during the worst of my exacerbation at 17. I had some small OCD things around age 5 (after a very high fever following a vaccination) but they disappeared. At 14 I started with a lot of food sensitivities, always tired, always uncomfortable. OCD grew and peaked at 17. Major improvements now since starting treatment. I'm being evaluated for abdominal epilepsy right now, but what I think are "seizures" are rare occurrences when I'm on antibiotics (augmentin xr 1000 2x day; and recently a 28 dose of biaxin for high mycop IgG). As I feel better I'm working on getting back to living like a normal person, so I'd definitely say it's an improvement.

Just a note on the age bit, I did not begin PANDAS treatments until 19. It was caught late. I think that anecdotal evidence WorriedDad mentions is the truth for people who get treatment before puberty. Hope that makes you feel a bit more optimistic, cory.

Since starting abx last December I gained 10 lbs in just a couple months and then stopped (and obviously I am past the point of growth spurts). I had been restricting prior to that, so I think it's a combination of "oh yay I can eat food again" and a body that had been "starving" trying to find its naturally comfortable weight.

With Dr. B he ordered a huge list of tests for me and didn't suggest going tow separate days. So I did it all in one day--11 vials of blood from a 110 lb body (and I'm sure child is smaller) is not a good thing. First time I got very dizzy/nauseous from a blood test. So two days might be easier.

peanut butter on rice cakes (or good gluten free bread if you can find it)...you can add to that (banana, jelly, chocolate, marshmellows, etc).

Personally I have to wait for a day where I'm feeling really well (don't know if you're having those kind of good days yet). If I'm going while I'm having a real PANDAS day I will panic and get incredibly woozy, not over the blood, over the having to be trapped in the chair. It's more a claustrophobic thing for me. Anyway you find out what is bothering your daughter about it? It may not be the actual needle/pain/sight of blood. Will they allow her to sit on your lap?

Allison, From my personal experience, I remained extremely dependent on my parents while I was very sick. Trouble sleeping alone, didn't drive, didn't go into buildings alone, etc. Now feeling better I'm trying to do about five years of catch-up on independence I didn't get while I was sick (14-19). And that's ok, but I think it's an unavoidable situation. It's hard enough to learn how to be an adult, forget about trying with your brain scrambled. Independence can wait. I like to think of it this way: I was recovering from a broken back right now I wouldn't be focusing on driving alone, I'd be focusing on the good stuff I could do. As far as the personality where does it begin and the illness end, I think your daughter probably knows but can't exactly express it. At least, that's how it felt for me. I had no idea why I felt/did/said certain things and I couldn't still my mind long enough to figure out how exactly I was feeling. As soon as I started coming out of it I realized what was happening. But it's very hard to differentiate the emotions caused by PANDAS and your own emotions until one is missing, you know? And as far as having a supremely pissed off teenager, well, honestly, I don't think you can expect much else. This situation sincerely stinks and, in my own case, I was very angry the whole time (complicated by the PANDAS and of course being a teenager) but also just on the basic fact that my entire life just went out the window. There were a lot of days when I didn't get out of bed simply because I was not feeling well and on top of that depressed (not clinically, in a my-life-sucks sort of way). We had the best luck working within my limitations as far as school/social activities pre-treatment, than trying to go when I didn't feel like I could. That took a lot of pressure out of my life, but I think that's very individual and based on how far you are in your treatment. If I was still in high school now I'd try in a second to go back full time based on how well I'm doing with treatment, but ten months ago, no chance. Emmalily

I posted that article...it's from chronicbabe.com it is a clever name haha

You're making me cry, girl. We gotta have a long conversation soon. I'll message you my number tomorrow. So many hugs. Em

Haha yes we must meet. What's halfway in between us...kentucky? Maybe after you finish your memoir I'll write a foreword/preface for you

Nancy, I love that! Everyone should send that out, with the bolds like that, to their unbelieving doctors. And then I feel that all those doctors she tattoo it on the back of their hands so they can't forget it the moment they walk out of medical school.

Hi Emerson! I know, I haven't been on so much! Myco doesn't have to effect the respiratory. I had very high IgG results for it and could only think of one cold in the last five years where I had respiratory symptoms, and those only lasted for a day. It's sort of like how you can have strep without getting a sore throat. Myco would cause PANDAS symptoms just the same as Strep, and some people are having luck just treating it with antibiotics. So don't get ready to hope for Lyme yet. As far as lesser of evils go, I don't think any are particularly better or worse, so definitely don't worry that something is bad is coming at you. Like everyone else has said, the fact that he called the ID dr. just means he found something and that means you'll be getting treatment soon, either way. Glad you'll be getting some news!

Infectious disease doctors can be consulted about strep and especially about mycoplasma pneumonia, too...had he tested you for those as well?

Doing fine with the generic, too.

Thank you for your reply, emmalily. Were you diagnosed as a child or later on? I don't even know if I could convince my son to look into this, at this point. His issues that remain are more neurological-bits of compulsive behavior, anxiety, social phoboa, etc., etc. Thanks for any advice you might have. Hi, I was actually diagnosed by Dr. Kovacevic this past December. He got me started with antibiotics and then got me set up with doctors closer to home. If you/your son have the time/means to look into this, it's definitely worth it. At the very least, getting the blood draws suggested above might be worth your time just get an idea of whether you want to go forward. I've have major improvements in quality of live regarding anxiety and OCD. I went from being very much non-fuctioning, just sitting at home, having anxiety attacks on my couch to now being able to go out on my own. I'm definitely not 100% yet, but so much better off than before.

Hi Momkat, I'm 19 with PANDAS and currently just treating with antibiotics. Feel free to PM with any questions. emmalily