Monday, February 29, 2016

4 months without seizures!

I've been wanting to write another post and have been struggling with what to talk about.  Would a post about epilepsy be interesting to people who have no personal connection to it?  Well, my dear friend and fellow blog writer said to go for it ;)

As I recently posted on Facebook, Madelyn has not had a seizure in 4 months.  This is HUGE for her.  Prior to this, a typical day for Maddie could include five, 20 minute seizure clusters.  That is a lot for one little body.  Our life had become wrapped up in seizure management- watching for signs of one to start, timing its duration, questioning when to intervene, etc.  We carried our Diastat everywhere we went, just in case.  Our two babysitters had constant reminders from me of what to look for and what to do.  Complex partial seizures can be hard to spot, but we, along with our close circle, got pretty darn good at recognizing them in Maddie.

I remember starting in the school district and undergoing the required medication and health safety training.  My goal was to get that checked off my to-do list, and move onto something "more relevant" to what I would actually be doing everyday at work.  Little did I know, that I would some day be able to teach that seizure portion of the training in my sleep.  Diastat seemed scary and foreign at the time, but now it's just like a pen or chapstick hanging out in each purse and diaper bag we carry.

In my first blog post, I wrote about Madelyn starting a new seizure medication which resulted in a 2 week stay at Children's Hospital.  It essentially sedated her to the point of resembling anesthesia.  Well, fast forward to now, and that same medication is keeping her seizure free...... and conscious.... most of the time ;)  I stay in constant communication with our neurologist's nurse.  We talk weekly about dosing, noticeable behaviors, sleep time, awake time, appetite, etc.  Managing her seizures is not easy, but with hard work, it has paid off.  There is no feeling like being on an airplane or in a crowded restaurant and knowing that your child is about to have a seizure and there's nowhere you can quickly go and nothing you can do about it.  We don't have that fear anymore, and that makes all the work/appts/travel/hospital stays worth it.

I am shocked by how many page views my first blog post has had.  The ticker currently reads 2,544 views.  Because of this, I think it's important that I share these experiences.  I am in no way an expert in children with complex medical needs.  But, I've gotten to know quite a bit.  The most crucial thing I've ever done for Madelyn is to get a second opinion.  Locally, options are very limited in pediatric specialty providers.  I used google to find our current neurologist and epilepsy treatment center.  And, I really feel that it has saved Maddie's life.  Our pediatrician had told us that Maddie couldn't go on having 5 seizures per day, eventually something terrible would happen.  It's not sustainable.  But, there was no one here who seemed to be able to help.  Thank god for the internet because that's how I found Minnesota Epilepsy Group.  If you are even remotely curious, I would suggest doing a quick search of their website, .  This clinic is comprised of the leading neurologists and epileptologists in the country.  They are the only Level 4 epilepsy treatment center in the Midwest, and they just so happen to be less than a 3 hour drive from here.  I can't convey how good it feels to be with a medical team that is the best at what they do.  I could go on and on about the benefits of working with this team.  But I'll leave it where I began.... Madelyn hasn't had a seizure in 4 months.

If you or someone you know wants more information on our seizure experience, please contact me.  I feel so passionate about sharing this.  We couldn't accept that Madelyn having uncontrolled seizures would be a part of our "normal".  And now it's not.  This may not last forever, but right now, we'll take it and enjoy the calm.