Bennett's Story
Bennett had a very normal gestational period and birth. He was generally healthy and our only concern was that he was a little smaller than we expected. After a few days, it became apparent that he was having trouble gaining weight, but so did his typical older brother. When he was 2 months old and only 8 pounds, I started to worry. At 3 months old, he still had trouble lifting his head, couldn't track with his eyes, and didn't respond to his name. We mentioned our concerns to his pediatrician and we started physical therapy at 4 months for hypotonia and torticollis. He preferred turning his head to the left. He was also developing a flat spot from turning his head too often.
At his 6 month check up, we discussed our concerns with his doctor (not sitting up, not tracking, etc.) and right as we were leaving, I asked if maybe it was something neurological and we should get some testing done. She agreed and scheduled an MRI and an appointment with the neurologist. The MRI came out normal and I had mixed emotions. I was relieved, but also knew something was still wrong.
I arrived at the neurologist appointment not feeling too concerned. I thought she might wonder why we were wasting her time. Boy, was I wrong. She examined him for 2 hours and scheduled urine, blood, and chromosomal tests to be done. I asked what she thought was wrong and she replied that she had a "long list of possibilities". I was instantly very, very concerned.
Nothing much was discovered until at 7 1/2 months old, Bennett had his first tonic seizure. We were at a birthday party and Bennett was napping in his stroller. I happened to look down and see that his extremities were stiffened out in front of him and his face was turning from red to purple, his eyes bulging, and he wasn't breathing. I pulled him out of his seat and immediately layed him down to start CPR. At that moment, he started breathing again. In that short time span, I thought for sure my baby was going to die. I didn't know that he had a seizure. I almost thought it was kind of heart attack. We called 911 and we took the ambulance straight to the emergency room. The doctor immediately assumed he must be sick and therefore had a febrile seizure, which would be typically harmless, and it was not likely to happen again. However, after taking his temperature and realizing that he wasn't sick, we scheduled an EEG for in a couple of weeks to see if there was more seizure activity going on.
The next two weeks were horrific. Bennett had two more of these every-mother's-worst-nightmare type of episodes and each time I thought I would lose him. I was afraid to go to work, for fear he would die without his mother with him.
His EEG testing day came and he was diagnosed with tonic seizures and prescribed Keppra. Luckily, those awful seizures stopped and we were calm for a few weeks. After a month or so, I noticed that Bennett was stiffening often and seemed to have extreme startle reflexes. I mentioned this to his neurologist and she said that it was probably just normal baby activity, but we'll schedule another EEG. The night of the second EEG at around 4:30, the doctor called me and said to get to the nearest pharmacy as soon as I could to pick up Prednisone to treat what he called "Infantile Spasms". The doctor also said to not look it up on the internet because it was a "very scary" situation. I narrowly missed the closing of our local pharmacy and picked up the medication in a panic. That night, after his first dose, Bennett cried inconsolably all night. Prednisone is awful on little bodies.
Bennett's Infantile Spasms improved for a couple of weeks, but then started up again, worse than before. He was on Prednisone for 6 weeks, until his neurologist determined that it just wasn't working. During those six weeks, Bennett developed "moon face", bloating, and would cry for hours straight every day and night.
Now that he had a diagnosis of the Infantile Spasms, the posibilities of what could be causing his issues became more narrow. Bennett's neurologist ordered a testing panel of rare genetic diseases characterized by Infantile Spasms, but it would take six weeks to get the results. That was a very long six weeks of my life. I actually ended up taking a month leave from work because I could not handle being away from my angel, who was suffering from these seizures day after day and it made it even more difficult not knowing what was causing this.
On May 4, 2017, I got the call. Bennett's neurologist called to tell me the results of the panel. She mentioned that Bennett was missing a protein and that boys were affected much more severely. I don't think she even mentioned the name, CDKL5. She said she would send me a link to the website and a Facebook support group. Bennett was 11 months old. Our lives were changed forever at that moment. We embarked on a journey filled with pain, sadness, hope, unconditional love, inspiration, and the rest is still left unwritten...
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