Monday, September 25, 2006

My Biggest Fear

Everyday for over the last year and a half I have watched Crew experience multiple seizures. The seizures are what experts call Myoclonic and Absence seizures. Myoclonic seizures are when the person may have short, sudden, powerful movements of the arms or hands. Crew has been having seizures where his eyes roll around and his body jerks really quickly for only one or two seconds. Then it is over and he is right back with you laughing and playing as if nothing ever happened. They have been very short but really frequent averaging over 100 times a day. When this happens I usually go on as normal and attempt to ignore it. However, deep inside it hurts... a too frequent reminder of Crews brain injury.

Absence seizures may also be called petit mal seizures and are common in children. During this kind of seizure Crew usually has a blank stare that comes and goes quickly lasting, again, only a few seconds. I haven't noticed these until recently. I wondered if his "daydreaming" or "lack of attention" was, in fact, another seizure. My friend, who is also a nurse, babysat Crew only a week ago and asked me if it was a seizure. I said "I think so..." and she did too.

After consulting with the neurologist, we had decided that because these seizures last only a second that we wouldn't medicate him. Crew is so full of life. Anybody that knows Crew knows how sparkly his personality is. Because of all the wild side effects associated with medication we felt we were doing the right thing.

However, deep inside I've worried that these seizures would turn into something bigger. And on Sunday night... my biggest fear became my reality.

Crew had been down for a nap for two hours. I peeked in to check on him and what I found crushed my world. His eyes were open, glazed over, no response, body limp, shallow breathing, and evidence of vomit. Shaking him didn't change a thing. I scooped him up, and ran to the front door calling for DH to help me. He saw me holding the baby and came running in followed by my nurse friend. Another neighbor rushed down with her pulseoximeter (spelling?) and hooked him up. His oxygen saturation levels were low indicating trouble breathing. We all looked at each other and the decision was mutual... get him to the ER fast! I ran out the door carrying Crew followed by DH and off to the hospital we went leaving my two boys plus two extra boys that I was tending for the weekend in the care of my good friends.

As soon as we entered the ER they rushed us into the trauma room and hooked him up to the oxygen. We waited two more hours for Crew to "come around". It was a very scary and emotional time for us. Something that I've feared for a very long time. The really unusual thing is that he regained control of his left side before his right side indicating more involvement in the left side of his brain. Seizure medication was started immediately and over the course of the next few months we will follow up with the neurologist and get an MRI and an EEG.

Because of the trauma that Crew experienced at birth (due to placental abruptio) and his history of seizures, the doctors are assuming that he had a Tonic-Clonic Seizure more commonly known as a grand mal seizure. My heart is broken. Last night I slept (or didn't) with him right next to me in bed. Tonight I am trading beds with son #1 so I can be right there in the room with Crew.

On a good note: Crew was happy today! He was 100% his normal bubbly self. For a few hours there, in the ER, I feared that he would be changed forever. Never before have I been so thrilled to be wrong!


  1. Oh, my goodness!! Just reading all of this I was freaking out! I'm SO glad that Crew is doing better today! I certainly hope that you and his doctors will be able to get him through this rough time! *hugs*

  2. Mel, I'm so sorry that all of you had to go through this. I really hope that the grand mal seizure is an isolated incident.

    I'm glad he is better and you will remain in my prayers.

  3. When my son has a seizure he stops breathing too. It is the scariest thing ever.

    Jon's weren't too difficult to manage, but the therapy they gave him my Neurologist told me was the one they give brain injury. It was a tsp a night (it does make him sleepy, but its night so it doesn't really effect him otherwise) of phenylbarbitol (I think that's right anyway). It kept his brain from having the small seizures so that it had the chance to heal.

    I don't know if this is helpful in your circumstance or not, but I hope so, and my prayers are with you guys.

  4. I'm so sorry.

    I know nothing about seizures, but many warm thoughts are going out to you from here.

  5. Mel.


    Prayers your way.

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  7. I wish there was something more we could do to help. Hang in there we are all praying for your family and for little Crew. We love his sparkling personality. I don't like it when he hurts.

    You've got our support.

  8. Anonymous3:35 AM

    I am so sorry!!!! It is scary to wonder if your sweet child will be coming back to you. That was my biggest fear when Evan had his stroke. Another stroke was my biggest worry when Evan has his surgery. I was not so afraid that he would die but that he would have another stroke, one that would change his personality leaving me with a strange child.

    I hope that you are able to come up with a plan to manage his seizures effectivly.

  9. oh, poor Crew!


  10. Oh Mel, I am so so sorry. Our experience with seizures has been limited to absense/partial seizures...very much like the staring spells you describe. I had the same fears and concerns you had/have with medicating for seizures. Jack's personality has not changed with being medicated. When we first started the meds he slept a little more, but that was only for about two weeks. We've seen complete control with Tegretol and as you read recently we tried to wean and then Jack had a seizure. I pray that Crew never experiences such an even EVER again. My thoughts are with you. If you have any questions about meds, please let me know. (((hugs)))

  11. I am so sorry. I can only imagine how hard that would be. I had a seizure almost 3 years ago, and DH said it was one of the scariest things. But, I'm on medicine and have been doing good, so I hope it works for Crew!

  12. Mel,

    My thoughts and prayers are with you and Crew. I have an understanding of seizures and they are very scarey. I hope Crew is feeling better. Have a good day. I am thinking about you all.

  13. M.

    We know you have been going through a lot lately. We have not called because we know you are busy, but you are in our thoughts and prayers each day. We love you and wish you the best.


  14. I'm shaking while reading this, Mel :(.

    I'm really sorry about what you and Crew have been through. Glad to know he's better now.

    And thank you so much for your comment over Blog of the Week post, too, Mel.

    Hugs for Crew,

  15. Mel

    I am going to HUNT you down, if you don't blog again.


    I just need a sign that you are okay.


  16. Just thinking about you guys. How's he doing?

  17. Sometimes as a parent, the worry never ends. My prayers are with you as you face this challenge head on. Listen to your 'Small Voice' and follow up on your feelings; continue to be positive in all things, and know that there are many who's good thoughts and prayers continue to support him (and you)through his struggles.


Your Thoughts and WhatNots are welcome here:)