Three weeks have passed since C had his sleep study done at Children’s Hospital of Wisconsin. It doesn’t feel like it could have been that long ago, yet this time has been filled with shock, stress and uncertainty. I haven’t told you about C’s sleep study results because I’ve been having a difficult time processing it.

C had his sleep study done on a Monday night. On Friday, I received a call from the pediatric ENT’s office, which had ordered the test. I was told that the sleep study revealed no obstructions to his sleep. Having witnessed what I thought was a terrible night of sleep, I was baffled. The nurse checked his chart three times to make sure we were talking about the same child. We were.

I was dumbfounded, but thought that was it. No sleep obstructions. Strange sleep, yes, but he was asleep and there was nothing inhibiting his sleep (adenoids, tonsils, etc.).

C Looks Out the Window

So you can imagine my shock when the pediatrician’s office called and informed me that C’s sleep study revealed suspicious brain activity.

Brain activity, as in seizures.

The thought of seizures hadn’t even entered my mind. Not even close.

In 20 percent of people, this particular type of brain activity is normal. In the other 80 percent, it is seizure activity. I was told to observe C for certain behaviors and call back if I noticed anything.

I observed. I combed the recesses of my mind for any indication of seizure activity. I researched.

I didn’t want to believe it could be possible. The possibility of my toddler having seizures was a lot to take in. I was consumed by the thoughts surrounding this possibility.

At the end of the week, I found myself searching YouTube on another sleepless night. The weight of the realization washed over me and I broke into sobs. I think C has been having seizures for a long time and I never realized it. I cried for him. I blamed myself for not knowing everything in the world. I blamed myself for not realizing something that I had never seen before. C has never had a seizure in the typical sense that we think of – it’s more of a focal seizure or a complex partial seizure. It’s like he’s in a daze. He looks around, sometimes even directly at you, but he’s unresponsive. He has automatisms (a word I’d never heard of before) like smacking his lips, wringing his hands or picking at his shirt or lips.

And so now, as this post is published, C is having an EEG. We will hopefully find out what we are dealing with and how to proceed. I will continue to come to terms with what all of this means for my child. My sweet, darling boy who deals with more on a daily basis than some of us ever need to face. And then I’ll probably cry for him some more.

8 thoughts on “What I Haven’t Told You: C’s Sleep Study Results

  1. My heart hurts for you. I know how much we, as parents, desire to take away all of our kiddo’s pain, challenges, frustrations…and when we can’t it just breaks our heart. I continue to pray that God will give you strength to advocate and learn all you can about Caleb’s needs. Realize that you will be able to help other parents who enter this uncharted territory. You will be strong enough to encourage yet sympathize with their journeys. Keep your head up girlfriend. You are not only going to help your own son through these new found challenges you are also going to touch others facing the same.

  2. As “SensorySpeak1979” said, “as parents, desire to take away all of our kiddo’s pain, challenges and frustrations…and when we can’t it just breaks our heart.” As your mother, I still feel the same. As long as I am on this earth, I will always want to take away the heartache you feel. There are so many blessings to being a grandparent but I have to admit, when there is pain, there is a line of pain. I want to take away all your heartache and heal our precious C. The love just goes so deep and continues to grow. May God provide all of you the strength, and courage to take one day at a time, the wisdom to recognize the proper paths to take for C’s care, the patience to handle each challenge that comes your way and the love and endurance to overcome these challenges so that we can just spend time loving our sweet little boy with all our hearts and soul.

  3. I have no wise words except to NOT beat yourself up about not knowing. You cannot be expected to understand all things medical, and you are a FABULOUS mom. I pray that the doctors give you a clear path to follow to help C. <3

  4. I am so sorry! I can imagine the heartache and helplessness. My daughter had a full on 15 minute seizure and I’ve lived in fear of a repeat. The second one was much smaller and only noticeable because she was sleeping on my chest and after I felt it she was non-responsive. It is scary. I wish I had some great advice or help to offer but all I have is my small understanding of your stress. I know the cause of hers and you are still looking for answers. I pray they are quickly found. (((hugs)))

Leave a Reply

Your email address will not be published. Required fields are marked *