Keep Calm, Carry On

Many of you who are Facebook friends may have read some cryptic posts about a "new diagnosis" on our Facebook pages, and some of you have asked what is going on. I thought I would post an update here, just to keep our family and friends (including those who are not avid Facebookers) in the loop.


Claire was diagnosed with Infantile Spasms on Monday. Infantile Spasms is a specific type of seizure seen in infants. It is characterized by spasm-like movements, a specific wave form on EEG testing known as hypsarrhythmia, and developmental regression. Seizures typically present between 4-8 months of age, but they can present later in infancy. The intellectual prognosis for children with Infantile Spasms is generally poor. In a nutshell, it is pretty much the suckiest form of epilepsy ever.


We first suspected spasms last week while we were at Duke, but we avoided sharing anything publicly on Facebook or here on the blog because we didn't want to over-dramatize what is a very serious situation or draw unnecessary attention by inviting everyone to our own personal pity party. We also hoped we were wrong, and we wanted to avoid creating worry about little Claire or appearing like the couple who cried wolf if, in fact, it turned out that nothing was wrong. (You may remember that we previously had an Infantile Spasms scare a few months ago.)

Because doctors take Infantile Spasms quite seriously, we were admitted over the weekend to Children's Healthcare of Atlanta for a 24-hour video-monitored EEG. We were very fortunate to have had many wonderful visitors while we were there, including friends from church and a fellow special needs mom who brought us delicious maple coffee glazed cinnamon buns.

Claire's doctors confirmed our suspicions on Monday afternoon and recommended that we start her immediately on Vigabatrin (Sabril), a drug recently approved by the FDA that produces some success in treating Infantile Spasms. Unfortunately, the drug comes with some serious and nasty side effects, including vision loss. With Claire's existing vision impairment, we were initially somewhat uncomfortable with giving her a drug that could make her vision impairment worse, but the other first-line treatment commonly used to combat Infantile Spasms --- ACTH, a steriod adminisered by daily intramuscular injections --- carries its own nasty side effects, so, on balance, Vigabatrin seems like the right decision for Claire for the moment.

How are we holding up? Good question. We feel overwhelmed at times. Sad. Hopeful. Angry. Faithful. Pretty much every emotion you can think of.

We have been touched by all of the kind posts and messages that we have received on Facebook and feel very lucky to have such wonderful friends and family. At the same time, we have caught ourselves wondering on more than one occasion "Why Claire?" and "Will she ever catch a break?" Sometimes, it just doesn't seem fair.

Nevertheless, we've tried to keep things in perspective. Claire's new diagnosis is not a death sentence, nor does it change a thing about who she is. She is still the same sweet little girl who likes to be held and who snuggles into your shoulder. She still plays in her little room and likes bananas.

And, while we would like to sit and fret about what this means for Claire, the reality is that our worry helps no one, least of all Claire. So, today, while it would have been easy for me to stay home and bury my head under the covers and cry, the best way for me to help Claire was to put on my best suit (okay, not my best suit, but you get the idea) and my strongest game face and get up at 4:30 a.m. to fly to D.C. for a client meeting.

There were plenty of times today (in the airport, on the streets of D.C., etc.) when I wanted to break down and cry, but I was able to keep a stiff upper lip until my client meeting ended late in the day. In fact, it wasn't until I boarded my return flight to Atlanta (which only had 20 passengers onboard a 150-passenger aircraft) that I allowed myself to have a quick cry, in the privacy of an empty row at the back of a darkened airplane cabin.

I tell you this last part (about crying in the airplane cabin) only because there is, actually, a punch line to this story: I made the mistake of letting the floodgates open before take-off, and shortly thereafter (before we had left the ground), the captain came on the intercom and told us that we would have to deplane. When I cry, it is obvious to everyone: My face gets red, puffy, and splotchy, and my eyes turn bright blue. So, I paid for my "moment" with the public humiliation of having to get off of the plane and step into the brightly-lit terminal, where, I'm sure, it was obvious to everyone that I had been crying.

Luckily, no one said anything. (I was picturing a scene from that show, Airline (you know, the one about Southwest Airlines that used to be on A&E), where a flight attendant would approach me and say "ma'am, now, we're not going to let you back on the plane until you can show us that you're emotionally stable enough to fly, do you understand that?")

We have finally taken off after a series of delays, so I'll be home in less than an hour. I can't wait to snuggle my sweet little monk-monk. That is, after all, still the best part of my day, spasms or no spasms.