Seizures are Back

Gabby with Mimi, Gavin, and Luke

Gabrielle went up to NYU for a video EEG in March because we were seeing some small episodes that looked like seizures. We were not able to capture any seizures over the 4 days during which she was hooked up. The neurologists did see some right sided spiking in the disconnected occipital area. We adjusted her medication during this visit and she came home on a slightly increased dosage of Trileptal and we took her off of the Lamictal.

For the 3 months that followed Gabrielle did really well and we didn’t see anymore suspicious activity. Then in mid June we began seeing some seizures again and after about a 2 week period she was experiencing 1-3 per day. We increased her Trileptal more after consulting with her neurologist and they dropped down to 1-2 per week. This past weekend however the seizure monster returned with a vengeance and she had a total of 17 seizures over the weekend. Monday, Tuesday, and Wednesday we had a reprieve but then yesterday and today she had 15 more.

The seizures we are seeing all look the same. They all involve right eye twitching/blinking. They last 15-45 seconds. I have begun using the following application to track them: http://www.seizuretracker.com We had her Trileptal levels drawn Wed. which came back at 32 which is a good therapeutic level. We are waiting to hear back from her neurologist Dr. Devinsky about increasing the Trileptal further or adding a new medication. I am planning to try to get Gabrielle scheduled for an ambulatory EEG as soon as possible. Basically I will bring her into Raleigh Neurology or Duke and have her hooked up and then bring her home for monitoring. They even offer video capabilities for these at home EEGs now. I was reading about it on the following blog: http://jackson-allen.blogspot.com/2009/07/at-home-eeg.html

So in a nutshell we will try to stop the seizures with some med changes and capture some on the EEG so we can get a better idea about where they are originating.

On a happy note, developmentally Gabby has been doing well. Her speech has really taken off over the last several months. She is using two word phrases more and more and she is beginning to vocalize her needs and wants without needing to be coached. Some of her favorite words right now are: seagull, eat, awake, sleep, book, Mimi, Poppy, house, home, and hot cocoa (She is convinced the large cup of coffee that I consume each morning is really hot cocoa.:) Her receptive language has also improved greatly. She is able to follow two step commands and demonstrates understanding of a growing number of things. She is sleeping in a twin bed and is able to climb off of the bed unassisted and into the bed with the help of a stool. She can walk up and down stairs if a railing is present (and a spotter). She continues to love books and can point to and identify many different objects. We watched a movie together Sunday and I was amazed by how many things she was able to identify. The main differences I am noticing with the return of seizures are: acting spacey at times, tired, clingy, decreased attention span, more wobbly at times.

Please join us in prayer that Gabrielle would continue to move forward and that we can regain control of these nasty seizures once more.

Thanks!
Kelly

Comments

  1. Robin Prado says:

    We love your sweet Gabby and we are fervently praying for answers. She is a great joy to be around – always smiling and accomplishing new things. ?We are here to help meet any needs we can. We love you all.

    paul and robin

  2. Margaret & Graham says:

    We’ll be praying. Gabby’s progress is terrific – I love hearing about it.

    We love you all!
    Margaret

  3. Sherry Talbott says:

    Thanks for keeping us posted. We will continue to lift up Gabby and your whole family. You are all a testimony to the faithfulness of God to carry and comfort.

    Sherry

  4. Laura Williams says:

    Thanks for letting us know what is happening so we can be praying most effectively. Praying for strength, wisdom, guidance and comfort.

    Love you guys. Stand fast in the Lord.

  5. Dear Kelly
    So sorry to hear that Gabby’s seizures have returned. I am praying for her. Keep standing on that rock. The Father loves your family so much.
    Much grace and strength to you at this time
    Love Pam

    • Hi Pam,

      Thanks so much for your thoughtful comments. I would love to hear more about your son’s story and learn more about the results of his testing. Do you have a blog or carepage?

      Feel free to email me when you have and opportunity so we can share with each other.

      Take Care!
      Kelly

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