Aiden's Journey

One Little Boy's Battle with Dravet Syndrome


I don't understand.

Posted by Nicole on March 20, 2011 at 11:28 PM Comments comments (4)

Disclaimer: If you prefer the upbeat, Polyanna style stories, skip this post and check back next week.


I just don’t understand. I mean, I do understand how easy it is to turn your back and proclaim it is not your problem, but I don’t understand how people who do that sleep at night. How can you work for a company whose mission statement proclaims the company’s commitment to bettering people’s lives through (insert whatever line of business you’re in), when the company is unwilling to help the most innocent, suffering members of society?


Since moving to Colorado I have received multiple denials for prescription drug coverage for stiripentol and clobazam from:


Cigna (Our private insurer who included “Under no circumstances will this drug ever be covered unless it is FDA approved.” That was fun to read.)


Medicaid (With whom we have a hearing set for April 20th, but the medical director has already personally reviewed the cases and declared “While the effects of this medicine have not gone unnoticed in Aiden and other children in the state, we cannot go against our policy of not approving non-FDA approved drugs.” Um.. Yes, you can. It’s your choice, which is why it is termed “policy” and not “law.”;)


And the latest nail in the coffin: My husband’s big-name employer. I had high hopes for this one, as they have taken 6 months before issuing their first and only “no,” which most people spew immediately upon reading the request. For the record, it was a hard “no,” with clear statements that the appeals process has been completely exhausted and our only option is to fund the drug out of pocket. Which we already are. Oh, I suppose they know that and it helps them justify not covering it – why would they, when we already do? Thanks for that.)


I’m mad. I’m angrier and more disappointed in human nature than I have been in a long time. Every one of these companies had the right to deny our request the first, even the second time, for good reason. Policies are made to protect both the consumer and the company from random, money-sucking requests for experimental treatments. But stiripentol is not experimental. It is, in fact, the only scientifically proven treatment for Dravet syndrome, and has been approved for use in Europe for over 10 years. How is it possible that not one person who’s read our requests has had the moral tenacity to say, “Wait a minute, guys – This isn’t right. Let’s look at this again and use our judgement.”


You’ve all probably seen the commercials asking if you or your loved one took Depakote or Topamax while pregnant, and had a baby with birth defects. Yep. Depakote, the only drug these insurers currently cover for Aiden (and which is not FDA approved for use in children, by the way, but apparently there’s no “policy” regarding its use in our vulnerable children), is likely causing such severe changes to his tiny, fragile biochemistry that his children would suffer birth defects from years of use. That is, of course, if he could ever even have children, which is about as unlikely as the insurers doing the right thing.


Why isn’t anyone willing to help these kids? I don’t understand how you can hear Aiden’s story, or see him seizing, and say, “Oh, that must be so hard,” then walk away as if nothing happened. I don’t understand how companies can ignore the monetary savings these drugs bring in terms of reduced hospital stays, infections, brain damage, and lower need for therapy. (Did I say reduced? I meant zero. He has been hospitalized zero times since beginning stiripentol 14 months ago. But let’s not cover that one because of unknown potential side effects, like birth defects. Oh, wait – we’re talking about stiripentol, not Depakote, which they do pay for. I can just hear the insurers saying, “Shh – let’s keep our mouths shut on that one.”;)


How can everyone we see out here say, “This is just not our problem?” How do they live with their short-sightedness? Because eventually, the brain damage and loss of skills (simple ones like walking and talking, or feeding oneself) the children who are not on stiripentol and need it are currently suffering WILL be their problem. It’ll be the entire state’s problem because the family will have exhausted their resources, support system, and will have to institutionalize them when they are grown.


I am so disappointed in everyone’s unwillingness to use their judgement and help a child who cannot help himself that it makes my stomach churn. Can our family afford it? I suppose so. But we certainly aren’t putting anything away for the older boys’ college educations, which seems sort of backwards in a democratic society whose foundation is based upon a well educated population.


Yes, Aiden is still seizing, but they are not EMS-requiring prolonged seizures. No, he is not “normal,” but he still adds value to society. Just meet him and try to keep your heart from melting. Yes, our family can make the sacrifices necessary to fund a scientifically proven medication (the ONLY treatment option) that amounts to between $500 and $1500 per month. Is it right? No, it’s not, and I am not sure whom to turn to in order to right this wrong.


Posted by Nicole on March 11, 2011 at 10:38 AM Comments comments (3)

I've got nothing this week. Too many seizures, no answers, and a big old fight from Colorado Medicaid on two fronts (stiripentol and school nursing) have got me beaten into submission for now. I'll be back with some witty story about our crazy new dog or our adventures in explaining to pharmacists (doctors of pharmacy!) how to use and order the emergency meds Aiden needs, but for now I'm just tired of it.


p.s. And to the people who were complaining this week about the "uselessness" and "inappropriateness" of the school district's placement of their children in the special needs inclusion class:  That class you think isn't good enough for your child is the exact one mine can't even get into without my attending alongside him because they can't handle his medical needs. So no, I don't think the district should pay for your child's private school placement - I think they should hire a nurse so mine can even access that classroom you turned your nose up at. There. I said it.


p.p.s. And you, parents who were upset that the teachers mentioned the need for 7th grade shots to the class before you had a chance to calm your anxious child: Seriously? Is that all you have to worry about? I have very little sympathy for your "24 hours of hell" because your child was scared for their shots, and do not agree with you that the teachers should be reprimanded. They're doing their best and have a lot bigger fish to fry - give them a break!


People used to call me sweet...

Posted by Nicole on January 7, 2011 at 11:03 PM Comments comments (3)

I try not to be that parent, I really do.  You know the one.  The woman who saunters into your student's conferences 5 minutes late for a 10 minute conference and demands to know why her genius child isn't getting an A in your class.  It can't be because he doesn't do his homework, because you should be teaching everything he needs to know in class and homework is really just for the slow kids to do anyways, right?  Regardless, that parent would like to know what you're going to do to move that D+ up to an A by the end of the semester.  In two weeks.


I succeed in the older boys' cases, I think.  (Let's ignore the little busing situation earlier this year when I argued about the parent drivers for the field trip despite there being no other option and call it even, okay?  Thanks.)  I let them screw up, and explain why their scores maybe weren't as high as they could have been.  I urge them to do their homework but don't complain to the teachers when I think it's busywork or just very poorly designed.  (Did you catch that arrogance?  Wink.)


But I'm afraid when it comes to Smooch I pin my ears back and the claws come out.   This Monday, for example, I apparently reamed the director of international shipments at Fed Ex for an error that was, in fact, not theirs to begin with.  (They definitely screwed up, but the error started with the shipper in France.)  And when I say reamed, I mean yelled at the top of my lungs, "No, Angela, you didn't do your best to deliver the package.  You did a mediocre job, quit trying, and NEVER TRIED TO CONTACT ME.  I need that package in 7 days' time, or my son will be in the hospital seizing constantly because your company failed to deliver a package marked "URGENT - Medical" and sent it back to France.  It'll be on your shoulders."




Did I really say that?  I have it on good authority that I did.  My almost -9- year old recited it back nearly verbatim, and informed me the entire elementary school heard it, too, because I was on my cell phone having walked them to school.  Whoops.  I'm sorry about that, Sweetheart.


I'm going to blame it on stress.  But aren't we all stressed out about something?  I don't see you running around yelling at people on your cell phone.  What is it about this fight that seems so unjust and makes me such an unpleasant person to deal with when things go wrong?  I think it's the rarity of the syndrome.  It's like every piece is new to whomever you're dealing with (the doctors who are surprised that someone with epilepsy needs to be followed by an orthopedic surgeon, or the people at FedEx who don't understand why you can't just run to Walgreens if he's almost out of meds).  They don't seem to get that every single piece of his care is a fight, because so few here have followed the same path. 


To Angela's credit, she did inform me where the package was every day at 8am sharp.  And they must have pulled some serious strings to get it out of French customs, shipped to the US, through US customs, and hand delivered to me today, Friday, at 10:30am, a process that usually takes exactly 22 days.  Sadly, the squeaky wheel does indeed get the oil.


I could say that I'm going to be a better person next week and keep my mouth shut and my claws retracted.  But I'm not.  Because next week is kindergarten registration, and he can't go to kindergarten until there is a nurse present in the building, our next hurdle to cross.  (Did I say hurdle?  This one is going to be more of a high-jump, without the help of a pole.)  Would it suffice to say I'll be calmer, though just as stubborn?  I think that's the best I can do for the foreseeable future!

My Christmas List

Posted by Nicole on November 28, 2010 at 10:44 PM Comments comments (1)

It’s your lucky day! Had you seen my original entry today, you’d have been down, depressed, feeling like there’s no hope… you get the picture. But fear not, gentle reader, I am back to being positive tonight. You know how sometimes you open your mouth in what seems like pure honesty, and then just a few hours (or minutes) later you wish you could suck those words right back in? Today I actually had the will power to put the computer down and not say things I’d certainly regret tonight.


Let’s keep it to this: My Christmas list. Infer from it what you may, and imagine the 1200 words I had written on items 1-5 earlier today.


1. Bedtime. All of my children in bed (to stay!) at a reasonable hour (8:00? 9:00? I’d even take 9:30.)


2. An angel to potty train Aiden. I tried again the other week to no avail. Obviously not blog-worthy, since success was not to be had.


3. Preschool. You know, the normal 2 hour break moms of young children aspire to, “one day,” when their youngest finally makes it there. Not the breaks our family members give – those are great but always make me feel guilty – the honest, deserved preschool break.


4. An insurance company who’ll listen to the patient and not hide like cowardly sniveling rats behind their “policy.”


5. An angel to handle the medical bills. Not just to pay them (that’d be great!), but to go through them with a fine toothed comb and figure out which ones are our responsibility, which ones were misprocessed, which ones should have been paid by insurance and were not, which ones apply to our current out of pocket maximum, and which ones apply to our old insurance’s out of pocket maximum.


6. A day without seizures, big or small. (A longshot, but it’s worth a try, right?)


I will fight the good fight, both with insurance and with school tomorrow, and Andy put Christmas lights on our fence in the backyard like I had hoped, so all is good… now. Let’s give a toast to the old rule of “counting to 10 before you say something you might regret,” and be thankful for the life we have.   

Ear infections, antibiotics, and dogs

Posted by Nicole on December 2, 2009 at 10:40 PM Comments comments (0)

So I had this whole entry written out last night about the top ten things Smooch has taught me. Unfortunately I have to add one in because I forgot that he taught me how to be flexible!


Today’s concerns have only to do with today. There was a great verse at Moms In Touch on Monday to the effect of “Today’s worries are enough for today. Rest and don't fret about tomorrow's.” It’s my new mantra this week.


Have I mentioned how much I love diapers lately? No, I mean I really love them. I may sometimes look longingly at the other children in Aiden’s class in their well-fitting pants lacking the telltale paper strip sticking out of the back as they drive their trucks around, but my heart belongs to diapers. The good news is that Aiden has an ear infection. Praise the Lord! That means his rough patch last week wasn’t our crash back to reality after a brief honeymoon on stiripentol, but rather just him getting sick. This is his 2nd ear infection in 2 months, but he hasn’t even had a major seizure yet! (I’m now frantically searching for wood to knock on.)


The bad news is that colds bring ear infections, ear infections bring antibiotics, and antibiotics bring… how shall I put this delicately?... constant soupiness. The dog has it too. And Andy’s out of town this week. I was seriously considering slapping one of those babies on the dog last night to get a few extra hours of sleep. But this is about Aiden.


Did I mention my love of diapers? I was reminded again today that Smooch is exactly where he needs to be right now. In diapers. He has so many stresses in his little life, so many bodily things he can’t control, and this is one thing I can help him with. Imagine having your vision go cloudy every few minutes, the world spinning, your entire upper torso being shocked and jerking quickly, and not being able to control it. Poor little guy. So I am toasting Marion Donovan tonight, the inventor of disposable diapers, and thanking her for taking one stress away from my baby and me. If you’re still reading, you are probably a mom. Most dads do not appreciate entire essays on diapers, so I apologize to any males reading this. It may not be glamorous, but it's real.  God loves those who roll up their sleeves and do the dirty work :)