The Search for an Answer

Anyone who has been following this blog knows that since day one (September 14, 2011) I have been on a mad search for answers for Brayden.  Sleepless nights, all nighters, and a ton of research later, we have something!  It seems unnatural to say I am happy about this, after all, no parent wants to see their child suffer.  So why do I feel relief?  Why do I feel positive?  I guess, in part, because knowing exactly what you're dealing with helps you to plan, to prepare yourself, and move forward.  I know longer have to wonder about what might happen.  

Brayden's case was put into EEG Review at the end of June 2013.  I was told then, that they were pretty backed up, so I have remained patient in waiting for the call.  Well, I received that call today!  Brayden's EEG was reviewed during yesterdays meeting which involved the entire Neurology Dept at Alfred I Dupont Hospital for Children.  Included in this group was what Brayden's neuro refers to as the house "guru" in the area of seizures.  The outcome is this.  Brayden is having seizures, based on epileptiform waves found within his EEG, and the video I provided of Brayden's episodes.  The doctor is strongly recommending Depacote for treatment, which I am completely against after reading about the side effects, and finding out there is litigation in review of this drug.  I let his neuro know that as of right now he is averaging 1 seizure a month with just the use of essential oils and melatonin.  My plan is to keep going with our current management methods.  Should his seizures become more severe in length and/or frequency, I will consider this other option.  In the meantime, I have the Diastat for any seizures that last 5+ mins.  I asked his neuro if this was a form of seizures he would grow out.  She is hesitant to make assumptions at this point as they didn't catch a seizure on the EEG.  However, she did state that in her experience, children who develop seizures at a young age like this, tend to grow out of them.  But she also said there are cases where they don't.  The important thing is we have to keep an eye on it.  Neurology is a very gray area of medicine, it's almost like you can never be certain of what you're dealing with, or what the outcome will be.

I am satisfied with this information.  After all that is what I wanted, information.  I wasn't surprised by the outcome, in my heart I always knew he was having seizures, I just needed to find a way to get them to see it.  Now that I have this info, and a means to manage it, I can move forward.  My last order of business is to find out if his BHS are a result of Autonomic Nervous System Dysregulation.  This, I feel is going to be a much bigger task! Doctors are so set on the fact that they are benign, that they are less willing to do the work to find answers! But I am not ready to give up on that one!

Thanks for the continued support! Please check out the following resources...

htt://www.BHSAwareness.com

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