Infantile Spasms

I want to take the time to explain what is really happening to Maddie right now. Infantile Spasms sounds fairly mild as a seizure type, but it’s name in no way accurately describes the effect these seizures have on the brain. Maddie currently has over 100 seizures every day. She wakes up every hour all night, with a seizure at least every two hours during the night. She can no longer walk unassisted. It’s not that her walking is suffering; she has seizures that make her fall down. And they come with no warning, throwing her down to the ground hard. Our Neurologist suggested it is time we get her a helmet. I wanted to suggest it is time he figures out how to stop the &”?*%~# seizures. But we don’t seem to be any closer to stopping them; they have actually gotten worse over the last two weeks. Instead of a helmet, we bought “walking wings” which are used to help a child learn to walk. It has a big strap around her chest with two longer handles that I hold onto behind her. This way when she starts to fall we can catch her before she hits the ground. This is not ideal, but it is the only safe way to let her walk.

I am trying to come to terms with Maddie’s diagnosis and what it means for her future. I know I have said this before, but cancer was a much easier thing for me to accept. There are just two outcomes, survival or death. And I knew how long the treatment was. I guess there is really a third outcome I had not considered, survival – but with lifelong health problems caused by her cancer treatment. Of course, any way she survives is better than the alternative. I selfishly want my child with me no matter what. And I will do anything and everything I can to help her lead a happy and healthy life.

But to watch your child regress and lose skills she once had is the most difficult thing we have endured during this whole journey, other than watching her in extreme physical pain. She is as loving and cuddly and interactive with me as she has always been, but her behavior is less mature and independent than it was 6 months ago. Her speech has regressed as have her motor skills. And if we don’t stop these seizures soon, it may get worse than this.

We are just getting started with the Early Intervention stuff, and I am sure it will help us work on the things she needs help with. I am learning so much from other parents of Special Needs kids, especially those whose kids have had IS too. For awhile, I was in denial that our child would too be a “special needs” child. I just didn’t want that for our child. I know that no parent does. But that doesn’t change how much I am going to love my child. It just takes an adjustment in thinking about what I want for her in life. And I will never get rid of those lofty goals either, I just may need to concentrate a little more on much smaller milestones for right now.

I have added some links to other IS kids’ sites and to more info about IS. I still have hope that we will get the seizures under control at some point, but the damage being done by them every day is very real, and I don’t know what it will mean for her in the longterm.

So I guess this post is a little less positive than most of mine, but this is our reality right now. My days are spent counting seizures and praying for a few more minutes in between. And, oh yeah, we also need to make sure she stays cancer free.

To end on a good note though, I added some new pictures of Maddie from this month.

Happy Girl

Happy Girl

I actually was unsure whether or not to post pictures, because in them she looks so normal. But there is nothing normal about having over 100 seizures a day. But I could not not share just how beautiful she is!

Love to everyone,

Liz, Brandon, and Maddie

11 thoughts on “Infantile Spasms

  1. Don’t give up hope and I so understand how looking completely “normal” yet having a devastating diagnosis is. My daughter, Anna was having up to 200 seizures a day until we finally got them under control. She abscence and partial complex seizures. These are rarely seen so people really look at you weird. Anna has a whole long list of medical and special needs and we have often been told- but she looks so normal, nothing could be wrong with her. We did Early Intervention plus therapy on top of that and it made a HUGE difference. We had a developmentalist who told us that he liked to refer to our children as Unique Children who were blessed to have have special challenges because they were stronger than avg child to handle what they needed to. He also said that these children tended to be the most loving.
    Hang in there and we will continue to pray for your strength and her healing. You can make it- we have for 19 years!
    Margie-CP MommasFIght and Anna’s CP: AnnasHugsAndSmiles

  2. I don’t know you but happened upon your blog and have been following it and praying for your daughter and you and your family. May God Bless you and your sweet and BEAUTIFUL baby.

  3. Liz,
    I think I may have finally figured out how to sign your guestbook! We’ll see if this actually works.

    Maddie, as well as you guys, are in my prayers. I feel so deeply for you. I can only imagine how you feel. It is hard enough dealing with a child with cancer. I truly can’t imagine.

    You are awesome parents and the love that you have for Maddie is so evident. She is lucky to have you for parents!

    You will continue to be in our thoughts and prayers.

  4. Maddie is so beautiful! She is just gorgeous. I continue to pray for her and all that she is enduring. I can’t imagine being in your shoes or being in her shoes. She has come so far and is continuing to fight so hard. You have quite a super-strong super-girl…I can tell that she gets much of that from her mama.

    Moment by moment.

  5. Your anger and your pain…it’s staggering even to me, someone who can at least have some appreciation for it because of my situation. But I can really feel it in your words tonight as I read this.

    It’s an unreal frustration, isn’t it, when it comes to facing something like this with your child. I never actually looked at Cancer the way you described until just now. The ‘simplicity’ of the outcomes…and how that compares to this vast…vast unknown.

    My heart breaks for you, for your daughter, for my son, for all of the people in our circle and beyond facing this.

    There simply has to be an answer.

  6. Well, my post just got deleted somehow!
    I don’t know how you guys are doing it. YOu really amaze me. You are right, cancer is easier because you know your kid will just feel crappy temporarily. I hope they figure out the (expletive) seizures. Sometimes I just wanna invite the doctors to my house so maybe then they’ll understand!
    Huge hugs to you.

  7. maddie is such a little cutie….and looks so much like her daddy! we think about you guys all of the time, and hope that the ei program will be of some help… both are amazing and inspiring…..and truly teach the rest of us the definition of determination……

    love to you all…..

  8. Good luck with all that you are dealing with. Thanks for posting. It is so hard to think about all that is… and all tht could be, and each day comes with many moments. Each moment that you get through is one that does not have to be lived again.

    Stay in the present, enjoy the moments between seizures. I can’t imagine what you are going through. Peace.

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