June 10, 2009

This Side Of Things

Many years ago, back in 2003 before I found the blog community, I was very involved with web support groups for Noah's epilepsy. One such group that had a huge impact on the direction we chose to take with Noah's treatment, and eventual healing, was a group of other Doose Syndrome parents.

I remained a part of the group well after he was seizure-free
, but after a while the emails weighed down my inbox (and to be truthful, my heart) and so I stopped participating regularly. Yesterday I clicked on over and wrote this message, words that I always longed to write. And for those not familiar with our story, it will be a real quick long-story-short version. (And I also include some personal facts about Noah that I haven't shared here before and so I will probably delete in a couple days.)


I am just checking in today, too, and oh how I miss this group. My Noah is 8
now, but when he was 2 yrs 9 months he had a tonic-clonic seizure- went to the ER, told it probably wouldn't happen again, it's normal, etc.

About a week later
he began an odd behavior that looked like he was going to have another seizure. Here's where it all seemed to begin (and I know his story is in the files somewhere) and it gets kinda blurry, but we went on meds then and the hundreds of seizures a day started... we searched for answers, found this group, got a helmet, found a new doctor (Dr. Linda Laux at Children's Memorial Hospital Epilepsy Center in Chicago), and got on the ketogenic diet fairly quick. He was seizure-free by day 4 on the diet and had only one seizure since then (a t/c believed to be a fluke, possible ear infection)...

it's now been almost 5 years
seizure-free? Could that be right? I used to count the hours, then the days. And now years have passed.


I want to give you all a hug and an extra breath of hope today. Our 1st doctor said Noah could end up in an institution. At this very moment he is outside playing basketball with the neighbor kids.

He is going into third grade right on time with the other kids, but did recently get an IEP at school and start special education classes for part of the day. It has so far showed very positive benefits.

I only dreamed of being on this side of things. I wish you here, too.

Much much love,

Stephanie Precourt

Mom to Noah, Carter, Gray, & Ivy



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Twitter me- I'm babysteph

26 comments:

  1. i think hope is a beautiful thing. what a nice gift that you are able to give to some families that are in need.

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  2. Well done, Steph: the writing, the compassion, and the getting there.

    Adam

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  3. Beautiful post - beautiful mama and very handsome little man :)

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  4. Giving hope is possibly the best thing you could do for families going through what you went through with Noah. I know that somebody will read that post and be able to start another day dealing with their child's seizures because you had the heart to reach out.

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  5. That is inspiring me to go back and write something similar for a group I was a part of when we were going through the process of dx'ing my step-daughter for BP and ADHD. We have seen a 180 in her behavior since proper dx and medication that I don't think we would have gotten to as quickly as we did without their help. Thanks!

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  6. Everytime I read something about Noah's story I am shocked at how identical it sounds to ours. Otter has an EEG next week. If it's normal we're coming off the diet! Thank the Lord for his miracles!

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  7. This brings chills to my spine. That's such an inspiring letter. Noah IS a true miracle. I can't believe he is a big 3rd grader now. Love him.

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  8. I got all weepy. I'm positive your words will bring hope and even ideas for new approaches. You done good.

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  9. brought tears to my eyes... a mother's love and the hope for others :)

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  10. you are an actual witness that wshat is said to be impossible becomes possible. giving them those few words of hope is a wonderful thing.

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  11. What a true blessing you received and that you passed on to the parents wondering if it even can get better. God Bless!!

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  12. I love that you are able to use the struggles you've been through to strengthen and lift up others.

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  13. What an amazing thing to give, hope. Having been through all sorts of things in life, myself, and my family, I know that hope is the number one thing you can give to people. It's the light in the dark that helps reassure them that they will find their way.

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  14. It makes me so happy that you are able to type such a letter. I'm so proud of all of you!

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  15. What a beautiful note and a beautiful thing to give & have HOPE.

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  16. I think that by sharing your story, you are giving a gift to someone who is lost in the darkness of worry, fear, frustration and hopelessness. Knowing that there are positive, inspirational outcomes can change the outlook of that one person who feels that there is no where to turn to.

    I know for me, it took forever to get my son diagnosed with GERD and that support group was a tremendous help. Again, I used a support group to get me through my PSD & ATD clotting issues in pregnancies and it was those women who infused me with hope, direction and determination to make things better. It was because brave women (like yourself) chose to share their experiences and the outcomes that came as a result. You are making a difference Steph and that is a priceless gift beyond measure.

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  17. What an uplifting message.
    I was just reading about Noah and I realized my younger (much younger, she's now 10) cousin Amelia also suffered from Doose Syndrome. Her prognosis was not good, we were told she would most likely have diminished mental capcity. She was under a year when she was diagnosed.
    But now, she's the brightest little thing, super smart and an absolute joy.
    Don't you just love it when doctors are wrong on stuff like this?

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  18. I didn't even go through it and I'm crying. I think we all face things in our lives and when we're on the other side, its almost like a dream? I have never had a child with something as serious as this, so I don't pretend to know how you feel, but it was a beautiful post and I had tears in my eyes!

    I hope you were able to give hope to those Mama's out there that are feeling like there isn't any right now.

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  19. This is fantastic Stephanie. I truly believe we are given different challenges and struggles so that we might help others through those same instances. I know that it helped me when Emma died to have other parents tell me that I would survive and that it wouldn't hurt like that forever. I am sure that you gave rays of light to many with that sweet post.

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  20. You guys have such an amazing testimony to God's love, mercy, and grace (although I am sure it didn't seem that way at the time). Praise God for Noah's health! And how great of you to share that testimony of hope with so many who are in the midst of terrible times.

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  21. What a beautiful post, Steph. My sister experienced seizures the first three years of her life, then again as she headed into puberty. The hope you provided with this post so mimics our experience.

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  22. You are such a wonderful, supportive person Steph. I'm sure this message gave many hope...

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  23. wow girl, I have seen you around the blogosphere but never really TALK To you, and definitely didn't know THIS. It brought tears to my eyes and Thank God that there are other doctors, online support groups, IRL support groups, that will help with ANYTHING out there.

    I'm glad Noah's seizure free. Congratulations!

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  24. How thoughtful of you to stop in and share that encouraging story with other moms. How hard it must have been to go through that (I can't imagine it!), but how wonderful it is that you're now on "the other side," looking back at how far he's come.

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  25. Hi Steph --

    Just getting caught up after almost three weeks offline. This post made me cry. I pray that we can join you on that side, too.

    Jade's doing very well during waking times now and we're seeing amazing progress in her development. I'm scared because she's also developed tonic seizures in sleep. Time to tweak the diet again... we may even go to 5:1.

    But it's so amazing to be able to let her ride a bike, go up and down stairs, play in the playground, all without fearing every second that she will have a seizure and be thrown. I thank God for that.

    Thank you for sharing Noah's story with us, Steph. You are such an inspiration.

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