Tuesday, December 1, 2009

Vaccine Rap...

Haha...this video is funny as hell!

Don't Inject Me

The only part I didn't think was funny was the part where he talks about how when you realize what you've done, it's too late.  I realized that I allowed my son to be injected with something that due to my family history, he never should have had.  But I realized too late and the damage was done.  Seems like too many people have to learn the hard way...

Sunday, November 8, 2009

The Caringbridge Update...

Below is the update that my Mom wrote for KC's caringbridge page.

We are gearing up to walk through the fire yet again with Mr. KC :(
He has been having some troubles for the last month or so and they continue to get worse in spite of Mommy's best efforts to slay the dragon that keeps bothering her boy.

Among the current issues are sleeplessness, extreme mood swings, biting, hitting and scratching himself and Mommy, stuttering, talking gibberish and then getting agitated that Mommy doesn't understand, lots of ear flapping and hitting himself in the head, irrational periods lasting from 5 to 30 minutes during which he needs to be restrained to keep him from hurting himself or the closest person to him, rigidness that is getting more consistent even to include a requirement that we enter in the same door we exited. Oh, and some seizing too! The list goes on but these are currently the major issues.

Poor KC and POOR Mommy! The fear surrounding what could be wrong this time and what uncovering what the problem is will entail, is overwhelming to us all. Frustration abounds, tears are flowing, and worrying is constant. 

Please pray that the wonderful doctors at the U of C will swiftly find out what the problem is and how to best solve it so our little boy can enjoy his life more consistently again. 

Thursday, September 24, 2009

Danielle's words....worth a read.

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 thrust fully into the war that rages between hospitals...insurance companies...drug corporations...and families holding broken children. Her insurance company initially denied coverage. The saga was intense for nearly a week as her son's neurologist went to battle beside her...writing scathing letters on behalf of the seizing baby boy.

In the end...they won that battle. And her son received treatment. Which helped for a time. But despite a price tag which could buy a decent family home even here in New England...Acthar is not a cure. Although it is one of the very very slim "chances" our babies of Infantile Spasms have to escape the Monster. If even for a time.

Which the mommy's son did. He was Seizure Free for a much too short spell. But the rage against the price-gouging tyrant did not lessen after the battle was won. It intensified. Posts were written. A few press corp attempted to tip the scales of right versus wrong. Capital Hill testimonies before Joint Economic Committees were passionately delivered. Interviews for books and even prominent televised news programs were given...although sadly most of those fell by the way side. Because, I suppose, she had no relation to Hollywood. But the mommy...whose advocate blood runs deep...continued to work together with other parents to increase awareness. To buck the system. To be the squeaky wheel and be heard.

But then on a different devastating day the seizure free time ran out. And day to day life became so altogether draining that the mommy had no energy left for advocating. It was all used up caring for her son. Who although injected with over a quarter of a million dollars worth of Acthar was not cured. But rather assaulted by 100s of seizures daily yet again. Because although I have shared this narrative in the framework of a fairy tale. It is anything but. And two weeks from this very day my beautiful little boy will be lying in a hospital bed. Wires protruding from his cranium. Connected to the Beast inside his skull. While we anxiously wait for the dawn of the following day. When doctors will preform what is closest to a real cure for seizures that we have at this time in history. Radical brain surgery. The removal of most of my little boy's left hemisphere. And pray to God...the Seizure Monster with it.

Quite possibly for a cost less than that of the Acthar gel with which he was injected. And proved not to be a cure. Though it may cost the same.

How ironic that Questcor...along with the Child Neurology Foundation...would be hosting an Infantile Spasms Awareness Week during the very month that Trevor (whose mommy once testified before the JEC against the tyrant Questcor) will be wheeled into a surgical room. Where the Seizure Monster their drug could not cure will be removed at last.

Also ironic that Don Bailey, CEO Questcor, with whom I have shared dialogue via email a time or two would not make me "aware" of their attempt at increasing awareness. Nor any other advocate parents with whom I am connected. In fact, I know of at least one parent who contacted Questcor in hopes of gaining an agenda for when this proposed awareness would be taking place...only to be directed to the Child Neurology Foundation. Who really had no clear answer.

Speaking of which...while monitoring my sitemeter I noticed someone from CNF spent hours combing my site. My silly hopeful heart. She actually entertained the thought that I'd shortly receive an email. And yet there has been no olive branch offered from that direction either.

Which leaves me wondering why?

Why would you not reach out to the parents whom you are cognizant have a passionate desire to increase awareness?

Perhaps it is not at all about increasing awareness? And I have no doubt my suggestion would not be remotely appreciated.

I certainly agree with Marissa's Dad that increasing awareness would best happen among those not already intimate with the disease. The pediatricians for instance. The educators who think every seizure is a grand mal. And such. Yet it is our understanding that this so-called IS Awareness Week will take place amongst neurologists. Whom I dare-say should have a solid level of awareness already. Which no doubt will be divulged over platters of fruit and cheese.

Which brings me to my own suggestion?

If Questcor (who makes very ambitious claims regarding the efficacy of their Acthar gel) truly stands behind their drug as a cure? If they truly boast a deep seeded desire to provide awareness for the families suffering this very rare and unknown disease.

I think an ingenious way to create a buzz would be to do something truly dramatic. Truly generous. Truly grounded in the belief that their drug is more than effective...but rather a cure...80% of the time.

I submit to you...short of decreasing the cost of their drug to bring it more in-line with other rare disease treatments...

Why not offer a reimbursement program to those who trial their drug and find it not to be a cure after all?

If Acthar fails - Questcor will reimburse

It's not a super sexy slogan. May I remind you that my creative energy levels are running on fumes as I prepare for my son to endure radical brain surgery.

Call me crazy, but I do believe that would generate some awareness.

Wednesday, September 23, 2009

Questcor is at it again....

This message below is worth a read....

From: Marissa's Bunny
Sent: Wednesday, September 23, 2009 3:26 PM
To: Ken Lilly
Subject: The Child Neurological Society, Questcor, and Infantile Spasms Awareness Week

Greetings, fellow infantile spasms parents! You may or may not have heard of me or Marissa, but we're in the same boat as all of you. Questcor and the Child Neurological Society are teaming up for an Infantile Spasms awareness week, but it seems to be a very focused event, and is only taking place at the annual CNS convention. This doesn't seem quite right to me. Following is the text that's being posted on Marissa's Bunny today discussing this, and I'd very much like it if you could either link to my blog with the post, or enter the text on your site as well with attribution to Marissa's Bunny.

If you'd rather do neither, that's fine too- but please address your blog reading public about this. Questcor has taken enough of our money and uses our children as shining examples of how their business process helps us, and disregards the fact that our insurance companies have paid them hundreds of thousands of dollars collectively. They speak a good game of promoting awareness, but I still have yet to see anything tangible, and buying a buffet table at a neurology convention and calling it "awareness" seems hollow to me.

It's hard to get a group of anybody to do anything in conjunction. Maybe this time, if we all speak out at once, we can get something tangible to happen. Please send this email to any other IS bloggers you may know. If awareness is what they want, then awareness is what they will get.

Marissa's Dad

Saturday, August 22, 2009

Do You Know Jenny?

By Kent Heckenlively, Esq.

If you had a problem with alcohol in the late 1960s or 1970s you might be quietly approached by someone who said they were "a friend of Bill W." Bill Wilson was the co-founder of Alcoholics Anonymous and those who had been through his program identified themselves as “a friend of Bill W.”

To be a friend of Bill W. meant you understood certain principles, such as asking forgiveness of the people you’d harmed, and turning your life over to a higher power. One of my good friends became a “friend of Bill W.” before I met him and remains one of the finest people I know. He sometimes talks about how much AA means to him and how he has gone onto sponsor other people to become "a friend of Bill W.” But not a lot. Being "a friend of Bill W.” also means being humble, regardless of the number of people you may have helped.

The other day I joined a gym. I haven’t belonged to a gym for years, but for me it’s the best way to exercise. I know others can be diligent and throw their jogging shoes on and run out the door, but that just isn’t me. I need a gym.

And since it had been more than a decade since I’d lifted a weight I paid for a couple sessions with a trainer. The beefy trainer in his early twenties seemed as if he lived a life light years away from my concerns. In the midst of setting up a work-out routine he asked me about my hobbies, and I mentioned that I wrote for a web-newspaper on autism because I have a daughter with the disorder.

“Do you know Jenny McCarthy?” he quickly asked.

I told him I hadn’t actually had the pleasure of meeting her, but she also occasionally wrote for Age of Autism, in addition to her books and television appearances. Then I asked how he knew about her.

He went onto explain he had several cousins with autism and their parents were avid followers of Jenny. And it struck me then that Jenny McCarthy has become our common touchstone, just as Bill W. was to a generation of people struggling with addiction problems. Like alcoholics struggling to recover in the 1960s and 1970s we're still something of an underground movement, but Jenny is our code word.

I didn’t have to explain about the role of vaccines in autism, the raging debates, the “gene” studies which reveal less the more you examine them, and how we believe medical authorities are concealing vast amounts of information like the Vaccine Safety Database. My trainer knew. He knew Jenny.

And maybe that's been Jenny’s greatest contribution. You need only become familiar with her writings and public appearances to be in on the conversation. She has done so much of the education for us. We just need to continue that conversation.

When I go back I'm sure I'll have more conversations with my trainer about his cousins with autism and ways to possibly help them. I'd been looking for something of a break in going to the gym, but it doesn't seem like that's my destiny. The demands of the epidemic intrude even as I'm struggling to fit into a pair of size 34 jeans. And in the helping tradition of Bill W. it's the only response I could give.

In the future maybe the question won’t be “Do you know Jenny McCarthy?”, but are you "a friend of Jenny?”

Tuesday, August 18, 2009

Is there blood on your hands?

Sorry I haven't posted in a while.

I don't know why....

No energy for the fight maybe? That's a cop-out and I know it, but it is what it is. I lost it somewhere between therapy sessions, and follow up EEG's, and trips to Detroit, and meetings with specialists.

I'm struggling to get it back...because I need it.

I have six months worth of excitement, progress, fear and heartache inside, all bottled up. So I'm workin on it. I updated some things, such as my profile. It's a start anyway.

In the mean time, check out this post from a fellow blogger...

either copy and paste below OR just click on my title "Is there blood on your hands?"


Love the message...and the graphics!

For now...


Tuesday, January 27, 2009

Autism research blocked...

Janua​ry 16, 2009

Feder​al Membe​rs Of Advis​ory Commi​ttee Block​ Vacci​ne-​Autis​m Resea​rch,​ Defy Wishe​s Of Its Own Scien​tists​,​ Autis​m Commu​nity,​ and Congr​ess
SafeM​inds Withd​raws Suppo​rt for Autis​m Resea​rch Strat​egic Plan,​ Asks Dasch​le to Inves​tigat​e.​
JANUA​RY 16, 2009 - In a highl​y unusu​al depar​ture from proce​dure,​ gover​nment​ repre​senta​tives​ to the Feder​al Inter​agenc​y Autis​m Advis​ory Commi​ttee (​IACC)​ voted​ this week again​st condu​cting​ studi​es on vacci​ne-​autis​m resea​rch despi​te appro​val of the same studi​es at their​ prior​ meeti​ng.​ The resea​rch was suppo​rted by numer​ous autis​m organ​izati​ons and reque​sted by IACC'​s scien​tific​ work group​s and Congr​ess.​ The maneu​ver to re-​vote on the vacci​ne-​autis​m studi​es was initi​ated by the IACC'​s repre​senta​tive from the CDC and pushe​d throu​gh by the IACC Chair​,​ Dr. Tom Insel​,​ Direc​tor of the Natio​nal Insti​tute of Menta​l Healt​h of NIH.

Unlik​e most Feder​al advis​ory commi​ttees​,​ the IACC is domin​ated by gover​nment​ repre​senta​tives​ occup​ying 12 of the 18 seats​.​ Of the 6 publi​c membe​rs,​ 5 voted​ to retai​n the vacci​ne resea​rch at the meeti​ng.​ The lone disse​nting​ publi​c membe​r resig​ned from her organ​izati​on,​ Autis​m Speak​s,​ the night​ befor​e the meeti​ng.​ Autis​m Speak​s has issue​d a state​ment objec​ting to her vote.​

The CDC, part of HHS along​ with NIH, has been criti​cized​ by paren​ts citin​g failu​re to uphol​d vacci​ne safet​y.​ In a surpr​ising​ momen​t of cando​r,​ Dr. Insel​ cited​ HHS confl​icts of inter​ests on vacci​ne-​autis​m resea​rch due to the over 5,​000 autis​m lawsu​its pendi​ng again​st HHS. His comme​nt suppo​rts the autis​m commu​nity'​s conte​ntion​ that those​ in charg​e of promo​ting vacci​ne use while​ assur​ing safet​y are funda​menta​lly confl​icted​ and shoul​d not inves​tigat​e thems​elves​.​

IACC Membe​r and SafeM​inds Vice-​Presi​dent Lyn Redwo​od state​d,​ "​Revis​iting​ objec​tives​ alrea​dy appro​ved did not appea​r on the meeti​ng'​s agend​a.​"​ She added​,​ "​Advoc​acy group​s and legis​lator​s have been margi​naliz​ed in this proce​ss.​"

Senat​ors Enzi,​ Dodd,​ Kenne​dy and Santo​rum,​ as well as Repre​senta​tives​ Barto​n and Smith​ made state​ments​ which​ are part of the Comba​ting Autis​m Act of 2006 legis​lativ​e histo​ry that resea​rch on vacci​nes and their​ compo​nents​ and autis​m shoul​d be imple​mente​d by the IACC.​

Due to the IACC'​s actio​ns,​ SafeM​inds has withd​rawn its suppo​rt of the IACC Strat​egic Plan for Autis​m Resea​rch and reque​sts that incom​ing HHS Secre​tary Dasch​le inves​tigat​e the IACC'​s actio​n and recon​stitu​te the commi​ttee,​ inclu​ding remov​al of NIMH as its lead agenc​y.​

SafeM​inds is a priva​te nonpr​ofit organ​izati​on that inves​tigat​es and raise​s aware​ness of the risks​ to child​ren of expos​ure to mercu​ry from the envir​onmen​t and medic​al produ​cts,​ inclu​ding thime​rosal​ in vacci​nes.​

Monday, January 12, 2009

Seizure Video

KC just had a clean EEG, but this video shows obvious seizure behavior. The neuro only saw a small clip of this and he is guessing complex partial or partial, absence and myoclonic. I am worried now that KC has been seizing all along because several times I thought he was but took him in for an EEG and after it was clean I wrote it off as sensory or something else. This time it is undeniable. Not sure if we will need another med now with the Zonegran. Friday we see the neuro and he will see this entire video.