Exciting News: MaryGrace Epilepsy Update

An Update Worth Celebrating

I have some very exciting news to share! Our epilepsy journey may be coming to an end!


If you have no idea what I am referring to let me ramp you up to speed;

When MaryGrace, the baby of our family, has epilepsy. If you’d like, you can read more about that here. She was put on medicine, and for the next better part of a year we worked out her dosage until she was no longer having seizures. Every time she would have a seizure we had to reset the time table and are so delighted to say we have made it officially made it to the sacred 2 year mark.

This journey was and is terrifying. The meds really changed her demeanor and it has been a struggle for our entire family. This post touches on the affects epilepsy has had on our boys and often serves as a good reminder for myself. In many ways, epilepsy really has made us all better people.

But here we are at the 2 year, seizure-less mark.

Now to get her off the meds… at the beginning of September we starting backing down her medicine. She will gradually drop a few milliliters each month, over the course of the next few months until she gets to zero. This is all very exciting and nerve-racking.

It’s actually very black and white:

If she has a seizure we start over, completely.

If she doesn’t have any seizures, then she has outgrown it!

Obviously, we are hoping and praying it is the latter.

Please continue to pray for our sweet girl as she is weaned from the medicine. When we adjusted the meds earlier this month she experienced all the gnarly side affects she had in the beginning. It was not pretty and we are bracing ourselves for it again next month.

I also want to thank all of you who have been walking through this with us. It truly means a lot to have this beautiful support system.

Bracing for impact in T-2 days!


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10 thoughts on “Exciting News: MaryGrace Epilepsy Update

  1. Wonderful wonderful news!!! She has matured and grown so much in the last 9 months, and I know she will continue to amaze you all, the doctors and everyone around her! I will pray for her little body to adjust well, and for you guys as a family. Take comfort in those who have walked thru this with you and all our prayers, peace and strength for the future. We love you guys!

  2. I wish I had found your site sooner! I have two girls who have had epilepsy too. We hit our marks this year, and both of them weaned off their meds in the same year! I’ve been told it could take up to a year and a half to know if they truly have grown out of it. Part of me is still braced for impact as epilepsy runs pretty strongly in my genetics. Congrats to MaryGrace and your family for enduring the nightmare of seizures! Bring on 2018!

      • My 11 year old daughter weaned in April or May. She was on meds for 2.5 years. The clarity returned and she started making As and Bs in school again, and she is not nearly as volatile as she was on her medication. She only ever had absence seizures, but her eeg showed she was having one 3 to 4 second blip every minute.
        My 9 year old was on medication for 3.5 years and just weaned this month. I am really hoping the clarity comes back for her too. She started out with lots of absence seizures which went untreated and consequently progressed to generalized seizures. She is extremely spacy and forgetful. Fingers crossed it’s temporary!