another Acthar waiting game

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 who
was reviewing the case at the insurance company said that she was finding
"conflicting evidence" about ACTH and since it wasn't FDA approved they may
not approve it, even though the doctor had shown medical necessity. ASAP
says that if it is denied, it could take weeks to do an appeal. Of course we
aren't getting the ACTH until this is figured out.

I was so so hoping it would be figured out today so it could be on it's way
to us tomorrow and we could get this started... we don't get delivery on the
weekend so if nothing happens in the next few hours, we are looking at
Monday as our best case (which will be a week from prescription to drugs in
hand). SO FRUSTRATING.

Any advice at all????



**********



I beat back my exhaustion and started whipping out emails. Like this one which I sent to Don Bailey, CEO Questcor.




Mr. Bailey,

I would love to think up some cleverly witty email filled with innuendo and subtle sarcasm. Two glaring reasons stand in my way.

1) Even after a quarter of a million dollars worth Acthar being injected into him...Trevor continued to have hundreds of thousands of uncountable seizures slowly stealing his life from him. And is now just a handful of weeks post radical brain surgery. Not much time for fun.

2) The urgency of the email below. (I forwarded the thread)

For the life of me I CANNOT comprehend why this is still continuing to happen. Surely with your recent management expansion you could find a way to make the process of obtaining your VERY expensive drug less complicated.

And for the love of all that is holy I would hope that this amazingly brave little family has the drug on their doorstep tomorrow.

...danielle foltz



*********


Do I really think my voice bears any weight with Questcor? With Bailey?



I used to be that naive.



But that doesn't mean I'm going to be silent.

have a chewy baby?

Trevy...all my kids actually...has always been a chewy kinda kid.



In fact, ages ago our EI bought him one of those fancy shpancy super expensive oral sensory kangaroo things. They vibrate to provide more oral sensory feedback. Would have been great. Except Trevor figured out shortly how to unscrew the thing and chew on the batteries instead!



Since his hemi Trevy is even more chewy! So Grams, the kids and I went on a chew toy expedition yesterday.



And found this wonderful little Infantino number at our local Walmart!



(ours is purple for epilepsy)











I LOVE it! Same concept as the super expensive sensory catalogue gizmo. Except no special needs label so you can purchase it for MUCH less! $5-ish dollars. Plus...it's all one piece so nothing to unscrew and choke on!



I recommend this product for any parent of a chewy kid!

more than just a kiss

So I guess the good news is...



at this point I'm convinced the hurlies are viral. Rather than pressure.



I woke up smack in the middle of the other night with the room spinning. Literally. It was the weirdest feeling! The security lights peeping through the curtains began forming a swirling halo around my head. I tried laying back down and closing my eyes. Didn't much help. My world was still rolling. Reminded me of Aunt Deb who has been dealing with this vertigo feeling for awhile now. Except mine passed. And the next morning I was fine. But Aunt Deb...I can now imagine what it feels like...ugh.



This morning finds Jonathan and Bristel curled up together in bed. The bed which I covered in plastic and towels...just in case. Not to be too graphic...but Bristel is good at hitting the bucket. Toby? Let's just say I hope the bug hops right over him!



**********



I know you guys really aren't here hoping to catch up on the latest sick news.



::smile::



I know why you're here.



I know who you're stalking.



And I want to share him with you. I desperately want to. It's been burning in my heart for days now. Stealing sleep. Sadly...not appetite.



I just can't climb over this hump of how. How do I convey all of this?



I want to pour every emotion out so effectively that even the unsuspecting reader that just happens to stumble here...will feel it.



And click away changed. From the core out. By the power...by the courage...by the magnitude of not just Trevy. But of every IS child. As we...our family as a whole unit...have been deeply changed.



And so has been my soul struggle.



Because when I tell you that we have a new nickname for him.



Romeo.



I fret the response to be, "awwwww...how sweet".



Which although nice...misses the essential.



I crave for your hearts to jump up and over the moon likes ours does every time he plants a slobbery one on us! He's given me so many smoochies these past few days that I'm not sure my heart will ever land. It's soaring away on wings of hopful abandon!



His kisses represent a treasure that once upon a time...when the Seizure Monster was dormant...we had. But then the Beast woke. And stole the treasure away. Where it was buried under disorganized brain waves somewhere in Seizure Land. And over time thought never to be found.



See...the miracle to me is more than the the sweet lips and peeping tongue sandwich. That I can't get enough of.



It's also that the kisses have been there all along! Masked by saturating seizures. Waiting for the key to calm the storm inside and unlock the treasure chest...



And now here we are. Staring inside this glittering gleaming Hope Chest. And stealing kisses from it like there's no tomorrow...



Because our hearts still remember when tomorrow was stolen away from us.



And to us that means that sometimes...



a kiss is WAY more than just a kiss!




(now watch the video below!)

It's a treasure!

romeo in action!

Make video montages at www.OneTrueMedia.com

vom-a-licious

Soooo...



Halloween is shaping up to be more on the tricky side...less on the treat.



Trevor has thrown up twice today. I'm happy to report we were able to get his meds in him. And they stayed down for several hours now. That's always my biggest fear. We've never had to use a rescue med. Just thinking about the possibility makes me queasy. And because I'm convinced the random vomiting in the hospital was seizure connected...I've been a little jumpy. But we've seen nothing (other than the vommies) that are making my seizure mommy heart squeeze.



He's been a little grumpy. But not overly.



Mostly he has been doing amazing. Truly amazing! Which is why it just stinks to have another set back.



::sigh::



Oh well...



I suppose it's less of an issue now that I never got 'round to getting the kiddos costumes...

swap it

If you bought some on a whim...



to enrich your budding brainiac...



and aren't satisfied...



The Baby Einstein Company is offering a limited time refund or trade for any dvds purchased between June 5, 2004 and September 4, 2009.



Click here for full details.



They are offering a couple different options. The one I'm leaning towards is the $14.99 hard cash refund. To ,of course, feed my newest obsession - Signing Time!

Questcor, at it again...not that they ever weren't

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 demographic?



The FDA.



Because if you'll remember...I mentioned before (before I had a 2 year old recooping from radical brain surgery) that they would be doing so. I also speculated...would ironically do so during the same timeline of their so-called awareness week.



Turns out I was right.



According to this press release Acthar was resubmitted to the FDA on October 15th, 2009.



Interestingly followed just a few days later by an expansion of their of their management team...read more here. If you don't mind that churning stomach feeling.



I know there has been some differing of opinion regarding the so-called IS Awareness Week.



My grudge runs way too deep to be swayed. A passion that burns deeply in my soul to protect other families from living the hell we did.



In fact...this is precisely why I could never join hands with a company like Questcor.



And for the record...



I spend EVERY day of my life LIVING INFANTILE SPASMS AWARENESS.



There is not one person whose life touches my own that I have not attempted to educate ad nauseam about the complexities of Infantile Spasms. I am just as passionate about creating awareness as I am about not sleeping with the enemy.

you may want to tune in

World Congress on Disabilities 2009 Educational Seminars


Keynote Address: General James T. Conway, 34th Commandant of the U.S. Marine Corps,
Thursday, November 19, 10:00AM EST

Lennox-Gastaut Syndrome: Implications for Care Coordination
Thursday, Nov. 19, 9:00AM - 9:50AM EST
Blanca Vazquez, MD, Pediatric Neurologist, NYU Medical Center, Comprehensive Epilepsy Care Program

Seizures & Seizure Management: Confirming Diagnosis and Assessing Treatment, Friday, November 20, 11:30AM - 12:20PM EST
Steve Wolf, MD, Beth Israel Medical Center, NY
Patricia E. McGoldrick, NP, MPA, Beth Israel Medical Center, NY

Seizures & Seizure Management: Brain Mapping & Surgical Intervention
Friday, November 20, 1:15PM - 3:05PM EST
Saadi Ghatan, MD, Columbia University College of Physicians & Surgeons, NY
Patricia E. McGoldrick, NP, MPA, Beth Israel Medical Center, NY
Steve Wolf, MD, Beth Israel Medical Center, NY

Hyperbaric Oxygen Therapy – its Efficacy and Safety in the Treatment
of Cerebral Palsy, Autism and Traumatic Brain Injury
Friday, November 20, 3:15PM - 4:05PM EST
Pauline Filipek, MD, University of Houston Medical School, TX
Daniel A. Rossignol, MD, International Child Development Resource Center, FL
James Jeffrey Bradstreet, MD, International Child Development Resource Center, FL
Moderated by Rick Rader, MD, Morton J. Kent Habilitation Center, TN




Click here to register...and then mark your calendars to join in live online.

what would I do without Grams?

Even though Trevor is doing really really good.



It's a lot like bringing home a newborn. Or a kid who just had a hemi I guess.



::smile::



He literally requires constant 1:1 attention. While he can take a handful of steps unassisted. That's tops. Which makes everything in the house a Trevy head bopping hazard! And Jonathan going back to work today was a welcome to reality moment! For him too...I'm sure.



More than ever I feel so thankful that we were Providentially redirected to put down roots here. In Rhode Island. Near my parents. We had no idea that our lives would move this direction. But Someone did!



Grams has worked her schedule out so that she can be here with me every day this week. As I try to figure out how to balance the housework...and schoolwork...and therapies...and bill resolutions...and everything that fills your lives too! Except cooking dinner...because our All Star teammate families have pitched in to meet that need. Which is truly a huge huge huge help!



Anyway...



I suppose my point is...



if I seem absent. I'm here. Learning to balance again. And I promise if there's drama to share...I'll share it! And for my friends who share their crazy lives online too...I'm reading!

whole buncha everything (a picture marathon)