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Anyone watch American Idol tonight?


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I don't normally but my Mom does & since I didn't have my Nuvigil this morning so I didn't leave my chair in the living room all day. School was cancelled, AGAIN. Thank God. Anyway... There was a guy who auditioned named Jason Durbin, he was diagnosed with Tourette's & Asperger's around the age of nine. Screamed P.A.N.D.A.S. to me but I can't find him on FaceBook. :( Well, looks like I know who I'll be rooting for this season!

 

 

 

 

 

This Nuvigil situation is making me very, very mad. When Texas gets half an inch of snow, we stock up on canned goods & prepare for the apocalypse. We got over six inches last week & school was canceled everyday but Monday. We called everyday anyway; they were out of the office. I took one of my Mom's (which are 250 mg, she only had two of a fourteen day trial from months ago left), then only had 75 mg for Friday... then was out. I took the last 250 yesterday because I had a test that I really needed to pass.

Called Monday & talked to a nurse who did NOT seem very happy with us! Mom fielded that conversation so I'm not ENTIRELY positive how it went down... but basically my Mom said we needed my Nuvigil prescription, nurse said we didn't have one, Mom said "Exactly. But she was doing well on them blah blah blah" & this nurse just pauses & goes "She was doing well on them? & how exactly did she get those pills?" in this nasty tone. So glad I wasn't on the phone because I definitely would have been like "Went downtown & some guy in a trench coat gave me some. He looked pretty legit.". She said she didn't see a positive MSLT & told us insurance wouldn't cover it (even though doctor already cleared us...) so she said "He'll call you back." WE called Tuesday only to hear he's "out sick".

 

If the insurance is going to throw a fit like she said (& which I've heard from many Narcoleptics... The better the medication, the more expensive, the less likely it is to get covered is how their pills seem to work. -___-) should we just say forget it & try a different one? I don't know if I posted about it on here, I know I did on the Narcolepsy Network (only other forum I'm on), but we only got up to one of the lowest dose pills once a day. It made me regain muscle tone & stop passing out, but I was still exhausted. Since it wasn't some miracle cure in a bottle, should I just go a different route & avoid the fuss? I think so.

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OMG, that kid definitely screamed Pandas to me too. I looked at my husband and he looked at me and said " I know, you think he has Panda's." Haha. I see Panda's everywhere. I am sitting here watching Discovery Health on television and there is a special about Tourettes, and there is a 16 year old boy on this that screams Panda's also.

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Did you have a previous script for Nuvigil? I just call a refill in to the pharmacy on drugs that I want refilled (even when there is no refill on the label) and the pharmacy contacts the docs office to get authorization. I'm not familiar with nuvigil though. They might require a physician's visit before it can be represcribed- that's what we used to have to do for Allie's benzos. Right now we're having trouble getting a refill for diflucan (of all things) because insurance says it needs pre-auth 1st.

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Here's my happy dream.... (I have a dream..)

 

this guy gets told about PANDAS, goes on to do very well or win Amrican Idol and prime time TV shows his amazing journey from intractable Tourettes to treatable PANDAS... 60 million folks get PANDAS exposure .. think I may start voting if he gets through the 1st rounds :-)

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Hey Emerson,

 

Sorry about your meds issues...and the wild weather messing up school.

 

I didn't see American Idol but I just pulled up some of the Americal Idol vids online and first, he deserves votes as he is quite an amazing singer and second, PANDAS seems like the most genuine diagnosis this guy could get. He even talked about being on meds for sleep.

 

Mary

from Michigan

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I didn't know you had narcolepsy. Did you, by any chance, have a flu vaccine...EVER? The reason I'm asking is that I saw the news last night, and they said that some teenagers are getting narcolepsy from the flu vaccine!!!! Then, they went on to say that "it still helps more people than it hurts!" Can you believe that?

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I didn't know you had narcolepsy. Did you, by any chance, have a flu vaccine...EVER? The reason I'm asking is that I saw the news last night, and they said that some teenagers are getting narcolepsy from the flu vaccine!!!! Then, they went on to say that "it still helps more people than it hurts!" Can you believe that?

 

Never ever had a flu vaccine! EAMom asked me the same thing. Always thought they were dumb. Did get swineflu about a year & a half ago, but no vaccines.

Being sick for a week < Feeling like someone's been beating you with baseball bats all night everytime you wake up. Supposed to be getting my license in four days... which won't be happening if I don't have my pills. :/ I slept through school today, got in a car wreck after school (I WAS NOT THE ONE DRIVING!!!), came home & napped. Will probably do about the same tomorrow. Minus the accident, hopefully.

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I thought of Pandas watching Justin on American Idol the other night as well, and I have often worried about whether all the parents and kids posting on the Tourettes and OCD forums here know to test or treat for it. I remember when I first thought my DS had TS/OCD, four years ago, and i knew nothing about PANDAS, I spent SOOOO much time on all the TS forums, freaking out, looking for guidance from other parents. When I did hear about PANDAS and asked about it, it was outright dismissed by one of the TS forum hosts. I don't remember which site that was. Two months later we finally tested for strep titers and got our answer. Treated ds and saw immediate and almost total improvement.

 

So, do you think they all know? Do you ever feel tempted to go on those forums and shout PANDAS?

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