Marissa's Bunny is an Infantile Spasms Awareness Blog. For those of you who know Chloe's story, you can understand why this is a subject very close to my heart. To follow is Marissa's story written by her amazing dad, Mike.
My beautiful Marissa was born on November 8th, 2007. Three months passed mostly uneventfully, but on the afternoon of Valentine’s Day we were watching the Muppets Tonight with Prince as the guest star in preparation for her nap.
She made this odd jerking motion. Then again. Then ten more times. I started to freak out about it and called my wife at work, called anybody I could try to talk to. Nobody answered, everybody was busy with life’s mundane tasks. Frantically, with the teary baby still in my arms, I turned to Google, and researched epilepsy quickly, but didn’t find anything relevant or that looked like what she was doing. I was relieved- but only for the moment.
We brought Marissa to Inova Fairfax hospital. She was a trooper through it all, dealing with poke after poke for blood draws and many painful failed attempts at an IV insertion. Hard for her to deal with, for sure, but miserable for her helpless father to watch. For eight hours, she patiently dealt with it all, the pokes, the prods, the investigations. It all changed just before midnight.
At about 11:30 that night, she seized again. This time, more seizures in the cluster, and more spasmodic. I could barely see through the wall of nursing staff. Discussions were had about immediate anticonvulsant medication, and how it wouldn’t help. About six minutes later, she stopped this seize. The staff was about as relieved as I was, but we still didn’t have a diagnosis. Watching her seize and know there’s nothing in this green Earth you can do about it tears you up.
The next day, after an overnight with a video EEG machine and an aborted attempt at a MRI (which required fasting, which you can’t logically explain to an infant!), we got a diagnosis. Marissa was diagnosed with infantile spasms. My wife worked in a pediatrician’s office for 14 years, and read just about every pregnancy book she could find, and she had never heard of this before. The same pediatrician who my wife worked with has maybe had one other case of this in thirty years of practice.
My sister in law relieved us at the hospital for a little while so we could go home, shower, feed the cats, and do the things in life that you forget you do every day, but they need to be done anyhow. In that rushed home stop, we got a better hold on the diagnosis and what it entailed- the severity of it stopped us in our tracks.
It’s been four months since the diagnosis at this point. We’ve been through a generic steroid treatment which did nothing, another hospitalization, daily intramuscular injection Acthar gel steroid therapy which ultimately did nothing, and three other anti-seizure medications with varying degrees of rashiness, baby rage, irritability, and success.
She made this odd jerking motion. Then again. Then ten more times. I started to freak out about it and called my wife at work, called anybody I could try to talk to. Nobody answered, everybody was busy with life’s mundane tasks. Frantically, with the teary baby still in my arms, I turned to Google, and researched epilepsy quickly, but didn’t find anything relevant or that looked like what she was doing. I was relieved- but only for the moment.
We brought Marissa to Inova Fairfax hospital. She was a trooper through it all, dealing with poke after poke for blood draws and many painful failed attempts at an IV insertion. Hard for her to deal with, for sure, but miserable for her helpless father to watch. For eight hours, she patiently dealt with it all, the pokes, the prods, the investigations. It all changed just before midnight.
At about 11:30 that night, she seized again. This time, more seizures in the cluster, and more spasmodic. I could barely see through the wall of nursing staff. Discussions were had about immediate anticonvulsant medication, and how it wouldn’t help. About six minutes later, she stopped this seize. The staff was about as relieved as I was, but we still didn’t have a diagnosis. Watching her seize and know there’s nothing in this green Earth you can do about it tears you up.
The next day, after an overnight with a video EEG machine and an aborted attempt at a MRI (which required fasting, which you can’t logically explain to an infant!), we got a diagnosis. Marissa was diagnosed with infantile spasms. My wife worked in a pediatrician’s office for 14 years, and read just about every pregnancy book she could find, and she had never heard of this before. The same pediatrician who my wife worked with has maybe had one other case of this in thirty years of practice.
My sister in law relieved us at the hospital for a little while so we could go home, shower, feed the cats, and do the things in life that you forget you do every day, but they need to be done anyhow. In that rushed home stop, we got a better hold on the diagnosis and what it entailed- the severity of it stopped us in our tracks.
It’s been four months since the diagnosis at this point. We’ve been through a generic steroid treatment which did nothing, another hospitalization, daily intramuscular injection Acthar gel steroid therapy which ultimately did nothing, and three other anti-seizure medications with varying degrees of rashiness, baby rage, irritability, and success.
Marissa’s infantile spasm seizures aren’t the same as a “stereotypical” grand mal seizure- they come in clusters, with each individual seizure lasting a couple of seconds. She can have as few as three or as many as fifty nine seizures per cluster. The whole event is normally over in ten minutes or less, but have gone as long as fifteen minutes.
Infantile Spasms is either a symptom of something larger, or it can be the disease itself. So far, Marissa’s only got infantile spasms as a disease and not as a symptom, but we’re not out of the woods yet. Around two years of age, with what’s called cryptogenic infantile spasms, they’ll either resolve themselves, or evolve into something nastier, and only time will tell on that...
Fairfax is a stuffed bunny I bought for Marissa during her first hospital stay. She had it with her in her hospital crib which looked like nothing more than baby jail during the day, and I clutched onto it for dear life at night. She had so many wires, cables, gooey electrodes, and other lines attached to her at any given time, I couldn’t just scoop her up and cuddle on her- the bunny was our lifeline to each other.
Fairfax is Marissa’s bunny - a shared name for a family of bunnies that are traveling the world trying to spread awareness of her disease that has no reliable cure and is hard to relieve.
Be sure to visit the Marissa's Bunny blog to find out how you can get a Fairfax of your own to help spread awareness about this unfortunate disorder.
12 comments:
Your blogs, both of them, are so beautiful and amazing. I think I'll click over to have a look around the Bunny blog.
Thanks for sharing Mariss's story with us. I have never heard of infantile seizures. It's just so much these children have to go through.
Hugs and Mocha,
Stesha
It is so scary anytime your child starts having seizures. I know last year was the toughest for us. I will pray that the seizures resolve and are not a symptom of an underlying disorder!
Thanks for sharing Marissa's story! I'm off to check out her blog!
I'm going to her blog too.
I'm going to check Marissa's blog right now!
What an sweet story--I'm going to check out her blog now!
My heart goes out to you and Marissa! I too know the helplessness of watching your baby girl have seizures and being able to do nothing to stop it! My little Annie has tonic clonic/grand mal seizures.
I wish you all luck in finding something that works for her, you will be in my prayers!!
I've never heard about these spasm seizures. My little sister had (and still has) seizures...the grand mal kind. It's hard to see her struggle with those, but I love her so much. Thanks for sharing Marissa's story.
Sweet baby Marissa, we know what that family is going through. I have no words, other than to wish them the very best.
Prayers that these seizures stop. I'm so sorry that nothing has helped, that has to be so frustrating.
I first heard about infantile spasms over 17 years ago. A friend of mines daughter was having them. I remember watching her and it looked like she was hiccuping. It was hard to believe all the damage they caused.
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