Chiari's Malformation

We were sure that Josh was having seizures. We were doing the MRI to determine if the seizures had caused damage to his brain when we discovered that Josh had Chiari's Malformation. He was only 5 years old. Upon learning this, I was terrified. What if he was having extreme pain or headaches and not be able to tell me that he was in pain. Josh has been non verbal since he was 17months old. We had already received the Autism Diagnosis, but we kept struggling with regression. He kept losing skills that he had already mastered. He didn't have your most typically known type of seizures, he has what is known as absent seizures. That day I learned two things, well maybe more than two things. I learned that seizures had not yet caused any damage to his brain, but we also learned that Josh had  Chiari's Malformation.

{https://youtu.be/50nI45Qn878} This is an awareness video from YouTube That shows some of the symptoms of Chiari's.

When the doctor first shared the symptoms with me, it crushed me. My son couldn't tell me if he was in pain. We knew that with autism he would struggle with sensory challenges, which he does on large scale. I struggled to hold it together when the doctor told me that Chiari's causes extreme pain throughout the body.  The doctor suggested decompression surgery. We had the best neuro surgeon.

The mark showing the site for the incision.

I couldn't get the picture to flip for us. This is the cool car that they had for IV drips.

We were all so nervous. He was only 5years old and this was a 5 hour surgery. Having the surgery was a no brainer for me. Josh had to have the surgery. We spent a week in the hospital. I never left my son. I was sleeping in the bed next to him, making sure that I didn't miss anything. He was scared and I could see it in his eyes. He was afraid to eat for days. He was afraid to move his head. He hated all the tubes, so did I. When he was finally able to walk up and down the hallway, I seen his confidence improve. He was so strong and brave.

I always wonder how Chiari's is effecting my son daily.  I keep a close eye for signs of pain or loss of strength. I try to not let it dictate our days, but there is a bit of constant worry in the back of my thoughts. More than anything I hate it that he can't talk. I rely on his actions and gestures to clue me in for what he wants and what he needs. He was climbing trees three months after the surgery. He has no fear. I'm thankful for that. He has had great follow up visits since the surgery. It seems that the surgery was a success. I struggle with what I don't know. The things that he can't tell me. I believe that finding out early was a good thing. Kids are amazing when it comes to healing. They are resilient. That was certainly the case for Josh.

Shelli Allen, My Kids MOM