Logan, Epilepsy & Type 1 Arnold Chiari Malformation

My sweet Bogan.

He was so tiny when he was born. Just four pounds, six ounces, and only 17 inches long. During his time in utero, he got the leftovers.  That's how my OB described it. Jack's umbilical cord was the first exit off the nutrient freeway, so he got more of the good stuff than Logan.  Because of this, Jack weighed in at nearly seven pounds. 

Just three days after he was born, they let us take him and his brother home. 

I remember that first night home, singing to Logan as he fell asleep for the night. 
"You are my sunshine, my only sunshine...
Please don't take my sunshine away."

And I broke down in tears. Here I had this fragile little bird, this tiny person, who was entirely dependent on me for everything, and I felt so helpless.  So vulnerable to his needs, and to my need for him to be okay and to survive. 

Suddenly I am there again. Only now he's big. And strong. And smart. 
And yet I'm worrying like I did when he was shorter than Josh's forearm. When his head fit easily in the palm of our hands. 

Last Friday afternoon I got a very unexpected phone call. It was a nurse from Logan's clinic calling to tell me there was an abnormality on his MRI.  Something called Type 1 Arnold Chiari Malformation that means basically instead of sitting where it should, in his skull at the base of his neck, Logan's cerebellum is growing down into his spinal column.  Sometime in utero, while he was trying to grow as hard as he could with less nutrients than he needed, his skull didn't grow as it should have, and now to make up for the structural defects, his cerebellum is growing down, into his neck. 

The cerebellum controls balance, mostly, and symptoms of Chiari Malformation can include:
  • dizziness
  • muscle weakness
  • headaches
  • numbness
  • vision problems
  • coordination/balance problems

Many people with Chiari Malformation are asymptomatic (without symptoms) and from what I read, it isn't related to his seizures in any way.  Regardless, in the beginning of May we are headed back to the neurologist to discuss what this may mean for Logan moving forward. 

As you can imagine, I have quite the list of questions for the doctor. The main one being, "Will this effect Jack?" It's funny because most times, Chiari is diagnosed from imaging done for other reasons. In Logan's case, we were checking for any issues in his top left hemisphere, where his seizures are located, and while there was nothing there (praise God, no tumors), we did find this malformation.

Of all the types to have, Type 1 is the best, which offers some peace, and he most likely won't experience symptoms as a child, (they tend to come on during adolescence or adulthood) but if he does start experiencing symptoms, surgery is the cure. So it's scary stuff.

In the meantime (between now and our meeting with the doctor) I am reminding myself that Logan has had this since birth, so there's no need to panic.  I am also reminding myself that God's got this.  He has walked us through Logan's seizures and epilepsy diagnosis, sent us an amazing doctor, and now has Logan's side effects from his seizure meds completely eliminated.  He can also walk us through whatever this journey may hold.


I have chosen not to share this diagnosis with Logan just yet because (like his mama) when he hears about potential side effects or symptoms, he tends to have them (or at least he thinks he's having them). So to protect him from himself, Josh and I plan to keep this quiet until it feels appropriate or necessary to share with him.  Thanks for understanding & (if you know us IRL --in real life--) thank you for not sharing any of this with him or his brothers.


Holly said...

Oh my goodness. What hard news. I'm sure your mama heart is just torn up over this. But you're right - God has this. I will pray for yall.

Alisha Jefferson said...

My friends daugter was just diagnosed with this, also a twin, she's 8 had surgery a month ago and you'd never know she had anything done. It's amazing.

Kristin in Alaska said...

My brother-in-law had two surgeries in his early 40's to rectify the issues this diagnosis was causing. He was not diagnosed until after he fell into a fairly deep hole. The surgeries rectified some pretty annoying pains (neck and headache) and as far as I know, he no longer has any symptoms.

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