happy being trevy

  I’ve been silent on this subject for a long time now.  Too long.   During the silence Questcor has gathered their arrogant loins about them and is once again seeking to pillage the most vulnerable.  In the words of my friend and fellow Infantile Spasms advocate, Mike,   “the IS Community needs to band together and insure that our kids are protected.  Screw me once shame on you.....Screw me twice shame on me...”   While our open letter is aimed primarily at our community, the Infantile Spasms Community, we fully appreciate that the impact reaches further.  You have our complete and full permission to share at will with those whom you feel this will impact.  Together , we can make a difference!   **********   Questcor, the company that acquired the rights to Acthar (ACTH) in 2001 and jacked up the price of this Infantile Spasms treatment, is at it again.  They have acquired the U.S. rights to another IS treatment – ...

    15     That’s the number of episodes he’s had since September.     The first two times it happened we just assumed it was a tummy bug.  I mean kids throw up all the time.  Yeah, it was weird that he only spilled once.  And also that he never had a fever or any other tummy buggy symptoms.  But not everything is a zebra , you know.     Or at least that’s what I told myself for months.     Stop reading into this has been my on going inner heart-alogue.     Then around December…I could feel the worry rising inside.     I mean, healthy people don’t vomit out of the blue a couple times a month.  He had several episodes that were particularly scary.  There was that Sunday when Miss. Kerrie, who has been our church helper for years now, wanted me to take him home with her because the episode he had was that intense.  She was worried enough to warrant mom being the...

I’m not sure how else to put it other than to just go ahead and say… I hated it! Hated.  It.  Just wait until I tell you what I’m talking about before taking my side.  Because chances are…you might not agree with me.  And I’m totally comfortable with that.  See, I’m on this new mission to be totally completely honest.  All of the time.  Including now.  Especially now.  When I’m discussing something that I abhorred from the tips of my chipping multi-color (compliments of Bristel) polished toes to my splits ends! And the worst part of it is… I was really looking forward to it too.  What a let down.  We’ve been dvd watching fools.  Ever since we learned that Netflix would be joining the Capitalists R Us Club.  You did hear that new this month Netflix will now be charging a fee for each service?  No more dvds and live streaming together.  Oh no.  Now you have to pay for th...

"Victory! 12-Year-Old With Epilepsy Can Bring Service Dog To School"     Change.com's headline regarding the same story I posted about yesterday.   Their take was much less violent than mine...but still one of advocacy.   ::smile:: Click here to read the full article.

I have never been good at seeing shades of gray.  I suppose I was just Wired to see things as black or white.  Right or wrong.   So when Blue Cross Blue Shield of Rhode Island informed me (via my new case manager) to take my outpatient Speech Therapy cause up with the State Legislation.  As the Law is clear these therapies are to be provided by the schools for peoples between the ages of 3 - 26.  There may have been steam thundering from my ears.  I really couldn't say.  I was too busy fuming.  The fire was further stoked when I was asked if Trevy has Medicaid.  Because, after all , isn't that what Medicaid is there for?  Why now that that you ask.... NOOOOOO   I suppose I'm old fashioned or closed minded or whatever...but I'm rather convinced that's what my Health Insurance is there for!   Because frankly...  ...if Trevor doesn't fit the bill of who qualifies to have insurance covered Spee...

That's what I told myself on Tuesday this week. When some jerk honked at Trevy's school bus for taking too long. From my spot on the sidewalk I could see the aide was having some buckle issues with the car seat. Not that it matters. There's always one jerk in every community. B-I-N-G-O! We found ours! That's what I told myself. But it happened AGAIN! Only yesterday I was blessed with a blaring horn AND a bonus of profanity screaming through the window while I tried to keep my smile on for Trevy's sake. And that of the crew of kids waiting in the car for me to haul them to various camps. I was SO hacked off. I even FaceBook threatened to call the police and media. In the end I didn't muster up the energy. But when it happened AGAIN this morning. Holy Crow...I blew a fuse!!!!! I'm STILL shaking in fact. I stood in the road and wrote down plate numbers of who I suspected was The Bully. And after I dropped the kids off at camp set about placing calls....

It's not that he's strong willed, really... It's just that he's persistent! Summarizes me. Drenched in sweat and stressed out mommy. After having placed him promptly in time out at least a dozen times in a row. For the same thing. Whereupon once seated firmly on the cheeky pillow he proceeds to make the door stopper thingie ~ booooing ~ repeatedly. Without missing a beat then reaches for the the desk drawer pulls. Because they make a fun sound when they flap like that. And they're within arms reach. My time out rule is... butt on pillow . Hands...may move freely about the area. Which is probably how he ended up sockless. And lifting a leg. So that the foot was just so. Perfect for bringing the big toe into sucking position. Because evidently...that's how cheeky boys like to spend their time outs. Sucking their toes and making boing-y things boing. I think he could do this all day. Easy. Where'd I put those IEP papers? I'll sign them!!! ...

Let me clarify. I am not an advocate of radical brain surgery as a first option in controlling epilepsy. That would be nuts. Let me be clear. I did not ever in a million years want to see my two year old son like this... or this... If you thought so...you would be nuts! But what I am advocating...is that parents of children with refractory seizures. Meaning seizures that do not respond to medication. Seizures that slowly steal children. Their joy. And energy. And ability to simply live. Uncontrollable saturating seizures that demoralize families. Infantile Spasm seizures for instance. Those parents should have access to every weapon available to help rescue their children. Sadly those children...my child...are written off by the majority of the neurology community. That is why so many IS families make the long emotional trek to Detroit. To see Dr. Rockstar . Who was brave enough to explore the possibility that some of these kids could be rescued. And so parents were ar...

Before our family was touched by catastrophic illness all this healthcare jazz bored me. To tears. I had little concern for who was advocating for whom. Who might be managing insurance budgets. And cuts. Or for the unfortunate souls who found themselves at the short end of the coverage stick. I was too busy gearing up to save the world. One Tanzanian child at a time. ::smile:: Two years ago my thinking radically changed. Which is most likely why my working hubby would forward me the article below. (nothin' like a little hot n' steamy poli-talk) And equally why I would read it. ********** Health care loophole would allow coverage limits (the author Mr. ALONSO-ZALDIVAR knows how to catch this girl's eye) A loophole in the Senate health care bill would let insurers place annual dollar limits on medical care for people struggling with costly illnesses such as cancer , prompting a rebuke from patient advocates. The legislation that originally passed the Senate health commit...

I don't have tons of time to (do much of anything really) read through all the emails filling my inbox from the various IS forums I belong to. But this one caught my eye...and is being shared with permission of the family. ********** Hi all, Has anyone else had trouble getting ACTH? We had it prescribed on Monday . On Tuesday our neurologist office faxed everything to the insurance company and to Acthar Support and Access Program. It seemed like all was moving along and we'd have the ACTH in hand on Wednesday or Thursday at the latest. Then we got called yesterday that there was a delay with the insurance ... that it looked like they were going to cover it under major medical (with a $5200 copay on our part that "should" be picked up by a national organization for rare diseases??) but that it hadn't been approved yet . I have had 8 phone calls today between the ASAP program and the insurance company and nothing has happened. The nurse wh...

Do you know how difficult it is to pound out a post. With a 30 lb toddler on your knee. Cranky and clingy. Because he just had half of his brain removed . With the goal of gaining seizure control. To beat back the Monster inside his head. Which...according to the team of neurologists from Children's Hospital of Michigan...was attacking his developing brain more often than there are seconds in the day . And that after two rounds of Acthar . ( you can read about the hell we went through to access it for our son here and here ) The drug with the hefty price tag (click here if you're curious what 60k looks like...keeping in mind that a whole course runs about 125k) . The drug with the hefty price tag belonging to Questcor . You know...the ones who sponsored Infantile Spasms Awareness Week. Come again? You say...you missed it? Hmmmmmmm ... Could it be that it wasn't ever really about bringing awareness to the population at large. But rather to their target demog...

Perhaps the irony will not strike others as it did myself. But after reading the recent Questcor news release stating... "Questcor has notified the U.S. Food & Drug Administration (FDA) that the Company intends to submit its sNDA for H. P. Acthar(R) Gel (repository corticotropin injection or Acthar) for the treatment of IS in October ." The light bulb in my head exploded. How about yours? Now it makes perfect sense why the sudden interest in sponsoring an IS Awareness Week. In October. Well...that and the fact that sales have been down. What with the decline in the national birth rate and such. Oh and also... this : "... if Questcor is successful in obtaining FDA approval for the IS indication, Questcor believes that it will also qualify for a seven-year exclusivity period during which the FDA would be prohibited from approving any other adrenocorticotropic hormone (ACTH) formulation for IS , unless that other formulation is demonstrated to be clinically superior t...

raising awareness (parts I , II and III ) than I suspect this post may also get your advocate juices pumping on this beautiful (forecast warm n' sunny here) Monday morning. See...after several concerned IS parent emails to the CNF we finally heard back. A solid week later. From John Stone Executive Director Child Neurology Foundation. I'm going to post both John Stone of CNF's correspondence addressing our concerns. Along with Mike Bartenhagen's response which (not to sway public opinion...but to encourage weary eyes to take a deep breath and continue through the whole post) had me giving him quite an exuberant standing ovation in my living room. I learned that our cute lil' cape cod has very nice acoustics. Sooooo my friends...may I suggest you get your reading specs out and your thinking caps on...this post is about to become (well worth the read) text heavy! ********* Dear concerned parents, Thank you for your recent emails. First, I extend my best to you ...

The comment below is exactly why I am shocked (insert - astounded...grieved...disturbed...and the list goes on) that The Child Neurology Foundation did not come to us to glean ideas for an Infantile Spasms Awareness Week. ********** "What do I want from IS awareness week? No parent should ever have to diagnose their child on YouTube No parent should be told that their IS child just has colic, reflux or a delayed startle reflex. No parents should be offered the choice between keppra and depakote as the first treatment Neurologists should put out an agreed statement on treatment protocol IS should be brought to the attention of pediatricians, nurses and nurse practitioners as an emergency condition that it is valid to refer a child to the ER with. EI therapists should have a pool of information on the best way and the best intensity to treat children and help them close the gaps. All people with IS should have access to the same quality and cost of healthcare as I am lucky to ...

We're a pretty tight-knit group. The IS community. We blog. We email. We post to forums. We chat on the phone. We friend each other on FB . And so on. Some of us have the very special opportunity to meet. And deliver an in-person hug that spreads from the IS changed spot in our souls right through to the squeeze of our arms. It is a very moving thing...let me tell you. Mike Bartenhagen is one of those IS friends I have had the privilege of meeting. He was the parent liaison on the FDA panel during the Vigabatrin hearing. I was the Epilepsy Foundation parent representative testifying before the panel. Jen Smith , advocate extraordinaire, was also in attendance. There to support both Mike and myself and to represent her son ,Austin, who achieved seizure freedom on Vigabatrin . For me...it will always be one of those memories. The kind you pull out on a rainy day to feel your heart warm. I'm posting below the email Mike sent to Alanna Peer (Development and Events Coordinator -...

Once upon a time... In a land far away... Where seizures were in remission and life was not so draining. There lived a mommy with fight in her heart. This mommy...together with her family...made a very special journey. At the request of a very important woman ...who also hosts the heart of an advocate. That was how it came to be that the mommy testified on Capitol Hill against the tyrant Questcor...and their criminal abuse of the Orphan Drug Act. See, a few months prior to the mommy's son being ensnared by the Seizure Monster...Questcor amplified the price of their drug. The front line drug. The drug indicated in the rescuing of her infant son from the Beast. Acthar gel. Over the course of a handful of days...Acthar's price point was increased from approximately $1200 a vial to $25,000 a vial. And it did not halt there. Today it can cost upwards of 30k per 5 ml vial. Most infants require a course of at least 4 vials. Suddenly the mommy...seizure saturated son in her arms...was...