As soon as Aiden was born he started having what we called at that time “tiny panic attacks” where he would have a very rhythmic cry for a couple of seconds and then his eyes would roll upward and to the left for a second while his arms flew out to his sides. It would only last for a few seconds, but it was noticeably different from normal newborn behavior right off the bat. And I mean as soon as he was born, right in the hospital. If I’m being completely honest, I even remember feeling them while he was in the womb. I had asked my OBGYN if babies could have seizures while in utero, but he brushed me off as a panicked first-time mom.
After he was born, I asked his pediatrician in the hospital what his “panic attacks” could be, I mean, what do newborns have to be panicked about at merely hours old. The pediatrician brushed me off much like my OBGYN as a worried, first time mother and told me it was “normal newborn behavior”.
After a month, Aiden’s panic attacks got bigger and longer, and I had seen 2 more pediatricians about it and gotten nowhere. I finally Googled baby seizures and found a video on YouTube on exactly what my baby did. I had seen enough and immediately packed up the car and drove to Primary Children’s hospital 4 hours away. They ran all the tests and, in the end, diagnosed him with epilepsy and sent us home on phenobarbital.
He was seizure free after this until about a year old. Then we noticed Aiden occasionally waking up laughing hysterically. At first, I thought he was just a happy baby having some great dreams. They would only occur when he was waking up or going to sleep. We were seeing a neurologist every couple of months for his epilepsy and I brought it up to him. He was unsure what could be causing it but decided to switch Aiden’s medication to see if that would help.
After another year passed and the laughing fits got more frequent I again turned to Google. I searched “laughing seizures” which lead me to some obscure page talking about a Hypothalamic Hamartoma. I brought it up to the neurologist at our next appointment and he assured me that was a 1 in a million chance. He said he wanted to do a 3-day EEG to see what was causing the seizures. I told him that after the EEG showed nothing, I wanted an MRI and I wanted him to specifically look for an HH tumor.
Long story short, a mother’s intuition is hardly ever wrong.
At the time of his diagnosis the laser ablation method was still somewhat new. We decided, after meeting with multiple doctors, that we wanted to wait a few years before having the surgery. Aiden’s seizures were still manageable on medication and, we were afraid.
Fast forward 5 more years. Aiden was in the first grade and having 2-3 seizures a week. Medication wasn’t seeming to help anymore, and he was so embarrassed to have them in school that he would try to hold his breath to keep them in. It was time to have the surgery.
Looking back now we were nowhere near prepared for all the surgery had in store. Our doctors told us it would be fairly easy. He could be up and jumping on the tramp a week later.
He had the surgery in Salt Lake City, Utah, in July of 2017. One day later they discharged us form the ICU. At the time he hadn’t even gotten up to use the bathroom or walked around for that matter. I had to physically carry him out of the hospital.
Aiden had substantial memory loss at first. He couldn’t remember anything past about ten minutes. He was also severely hungry. The two side effects combined led to some pretty hairy arguments, as he would eat a meal and then forget that he ate and still feel hungry! The memory problem wore off after a couple of months, but he still felt the hunger pains all the time.
Other than the physical side effects being hard to deal with, cognitively Aiden started to improve. Before, it always seemed that his brain was cloudy. He had a hard time concentrating and subjects like math were completely foreign to him. After the surgery, Aiden started to improve. He was still a bit behind but starting to catch up and beginning to understand things quicker.
Socially, he has some problems. He is slow to speak and takes more time than the other kids to get to the point of his conversations. He does well when playing with younger kids but boys his own age have started to notice that he’s “different” which has been hard on his self-esteem.
In the 18 months since the surgery Aiden has doubled in weight. At the time of the surgery he weighed 70 pounds. Aiden now weighs in at 140 pounds. We have not gotten him diagnosed yet, but I suspect he has a mild form of hypothalamus obesity as a result of the surgery. Before the surgery Aiden was an active, normal little boy who loved to climb trees, do flips off the side of the pool into the water, do the monkey bars and really, just loved to run. It seemed like everywhere we went I was having to yell after him “Aiden, wait up.”
Since the surgery he gained so much weight so fast that he was in pain. His feet hurt. He stopped running, he couldn’t hold himself up on the monkey bars, he couldn’t move and control his body like he once had been able to. This was frustrating for him to endure and for me to watch. Now, instead of me trying to keep up with him, I was having to drag him along constantly reassuring him he could make it.
We started having him swim laps every day and got him on a low carb diet which has seemed to help.
I told myself these were all ok things to deal with because we did the surgery so he could be seizure free and he was, up until about a month ago. He had his first post-surgery seizure on Super Bowl Sunday of this year. Since then they have come like clockwork every 5 days. We are all upset that we seem to be starting over but we go in May to have another MRI and talk with the doctors about the next step. I am trying to stay positive and hopeful but truthfully, I am scared. It seems that everything we have gone through up until this point has been for nothing. Any and all advice from here on out is much appreciated.
