Why I still have hope?

Friday, July 18, 2014

This post is for parents awake in the middle of the night, like I was not that long ago, searching relentlessly for answers on the internet about why their baby is having seizures. When so called experts give you absolutely nothing you feel helpless.  I googled over and over, causes of long seizures in otherwise healthy infant.  That eventually lead me to Dravet Syndrome and when I first read the description I knew it was what Paloma had.  As I have said before the prognosis is not good, including severe developmental delays and basically a life deteriorated by constant seizures.  It's hard not to feel devastated every time I read about it.  

A couple of months ago while scrolling through Facebook I came across a headline about a mom who treated seizures naturally and I quickly clicked on it.  That is when I was introduced to Dawn Willey's story. http://www.mommypotamus.com/kennedys-story/  Her daughter also has Dravet Syndrome.  Dawn has used only natural approaches to treating her daughter, declining anti seizures medications and using diet and detoxification to treat her. The idea of not using  seizures meds is a highly contested topic I have noticed in the Dravet Support Groups.  For us when Paloma had two seizures the neurologist on call in the ER immediately gave us a prescription for phenobarbital. I was scared to death and didn't question him.  Other doctors told me if she didn't take it she could die or have brain damage from the seizures.  I tried not to read about the potential side effects of phenobarbital because it made me sick to my stomach that my poor baby had to be on this stuff.  It wasn't until I read Dawn's story and a subsequent article stating how phenobarbital kills brain neurons in rats that I was brave enough to say enough.  I told the nuero I wanted her off it.  He was hesitant, but when I asked him how we truly know that it's working since she has had twelve seizures while on it, he said there was no way to know.  We have been slowly weaning and it will likely take us a few more months.  Her body is twitchy and jerky at night from the withdraws. 

Dawn's story is really the only thing that has given me hope about Dravet Syndrome.  Her daughter has defied the prognosis for Dravet and while she does occasionally still have seizures they stop on their own (which would be a huge improvement for us) and they haven't affected her developmentally.  I am holding on to this hope tight.  I don't know what are future will look like. If we are able to get CBD will it even work, will she have to stay on anti seizure meds, will the Gaps diet help? 

All I can do now is pray for the right path to take.  I would encourage any parents with a child with intractable epilepsy to read Dawn's story before going down the meds road. I wish I had,  but I did what I thought was best at the time and for that I try not to beat myself up too bad.

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