The dreaded 7 letter word

We had to take Mattie back to the eye doctor last Tuesday. I had noticed that she was losing focus and her left eye was turning outward on occasion. Dr G assured me that her eyes looked fine and the outward turn would improve as her eyes adjusted to the new position and got stronger. Then… the seven letter word that was about to turn our life upside down was said…seizure. As soon as Dr. G said it, I knew instantly. It was like my mind started to replay the past 5 days and what I thought were periods of “not focusing” very well could be seizures. I was shocked, although I am not sure why. We knew there was always a chance Mattie would get seizures. It is very common in kids with CP, 45-65%. Although I knew we were not out of the woods by any means, I had pushed that word completely out of my mind.

As soon as I left the office, my first call was to Jim. Could it have been this past surgery? Did they use a different anesthesia? Was she under for too long? Did she have a bad reaction to a medicine that was given to her? Why now? We started her on a mineral supplement 3 weeks prior to surgery, could that have been it? A million questions raced through my mind. I called Mattie’s neurologist and we scheduled an EEG the next morning.

I went back to work and was numb the rest of the day. That night I finally got the chance to “Dr. Google” and I finally broke down. I felt like someone punched me in the stomach. Seizures. Epilepsy. Are you kidding?? I was devastated. Can’t she ever just catch a break? I can’t even wrap my mind around what this means. I try to remember what gets brought up on the CP boards I follow, ER, meds not working, meds making the kid crazy, lack of attention, cognitive development slows…crap.

The office EEG came back normal. Later that day Mattie had another staring spell. The next step was to do a 24 hour EEG. The neuro scheduled it for Friday. We would have to spend the night at the Children’s Hospital. Mattie did fairly well, considering we were stuck in a room and I could not put her on the ground to roll around (which is where she spends the majority of her time) and she had 30 electrodes glued to her head. I on the other hand could not sleep and by the time Mattie woke up, I was a mess. The entire time I never saw a staring spell or seizure. Now it had been going on 3 days of not having one.

Twinkle

Get this off me!

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Dr. G finally came to talk to me around 11:30 Saturday am. At this point, I was expecting a result of everything is fine so I was not really concerned that Jim wasn’t there. We didn’t catch anything so I did not even bother doing any more research. I really began to think that it was a coincidence and even thought to myself that our neuro was going to think I am some over-paranoid mom… but was I???

“Mattie is having abnormal brain activity while she is sleeping”

I was completely taken aback and felt unprepared for this. Apparently there is a chance that she will have a seizure while she is sleeping and what we have been noticing are most likely seizures, although she did not have any staring spells while we were being monitored. I hear the words seizure meds, epilepsy, right side of her brain, abnormal… and I kinda go in shut down mode. I am trying to remember what I should ask but Mattie is crying and everything is a mess…

As I sit here and try to finish what I want to say about this, all I feel is sadness. My heart hurts for her because all I want is for her to live the best life possible. I am so worried about these meds and how it will affect her. Mattie has really come so far the past few months that I feel putting her on a seizure med will be a step backward. I feel like we are so used to getting bad news that my emotions go from crying to survivor mode in a short amount of time. There is no time for crying and sadness. I have to be brave and strong for my little girl and figure out the next step.

When Jim and I were finally able to do some research, we decide another call to Mattie’s neuro was in order. We had a ton of questions that I was not prepared to ask at the time he gave me the news. We also agreed before starting any meds, we would get a 2nd opinion. We gave Mattie’s neuro a list of questions today and were told he would call us this evening.

Jim and Dr. G talked for awhile tonight. We expressed our concerns about starting her on meds, the side effects, and the fact she has not had any seizures in the past 5 days. The final outcome was holding off on giving any seizure meds at this point. We are to watch her closely and see if she has any more absence seizures. If she does then we will have to start the meds. I am relieved but am still left feeling unsettled with the sudden change of direction. It never stops, the analyzing and re-analyzing, but for tonight I have the answer I wanted and I will leave it at that… until tomorrow 🙂

We appreciate all the messages, good thoughts, and prayers (more than you know). We have an amazing support system and could not do this without you. Thank you from the bottom of our hearts.

 

Look at these eyes!!Cookies!

10 thoughts on “The dreaded 7 letter word

  1. I am very hopeful that you won’t need to start her on any meds. Henry has a very hard to control epilepsy so seizures and medication are a daily part of life. I remember when he had his first one – it was devastating! And continues to be a struggle. But you guys are doing exactly what you can for mattie. You are in my thoughts!

  2. You guys are so strong! I do not have an idea what other parents faced with the same situation go through, but I can imagine not all of them take the time to do the research themselves. I would have to imagine, a lot of parents would just go with what the doctor tells them to do.

    Mattie is a lucky little girl to be born to such awesome parents! I look forward to seeing you all on race day:)

  3. I just stumbled across your blog tonight and it sounds like you could use some encouragement. My daughter has a type of epilepsy called ESES (electrical status epilepticus of sleep). She does not have seizures that you can see, only abnormal brain activity while she sleeps. I know epilepsy and seizures are scary things for you to be facing right now, but there is hope and there is help out there. Please be sure to ask your doctors about ESES. It is rare, but if it goes undiagnosed (primarily because most doctors are unaware of it) it has extremely serious consequences. Since our daughter was diagnosed and started on proper meds it has been like having a new child. She has taken off in all areas of development and the doctors have given up trying to predict what she can and will be able to do because she keeps blowing past all of their predictions. Kids with ESES are basically getting zero sleep, their brain never has a chance to rest, restore, and grow. Our daughter’s diagnosis of epilepsy was the best thing that ever happened to her. Now we know how to help her be the most amazing little girl that she can be. Best wishes for you and your family. You are welcome to contact me directly if you have any questions.

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