Saturday, April 14, 2012

Intractable Epilepsy and life in a bubble

Recently this statement has come to my attention.Do children  that are on seizure precautions live life in a bubble?

Having kids with a devastating seizure disorder is such a balancing act.You often feel like you're walking a tightrope ready to tumble over at any minute.

On the one hand you want them to have a full rich life,but on the other hand you don't want their lives to be shortened while allowing them to have that full rich life.

In 2009 when Ariel had,had a really bad Staus Epilepticus event and was in the hospital,they had required a CNA or nurse sitting by her side the entire time,we had this one gal come, she was telling me about her brother who was Epileptic.

She was telling me how her mom thought it was stupid to put Epileptic kids on seizure precautions.I'm thinking "really you're telling me this right now with my daughter so ill from having over 15 convulsive seizures in a row and in PICU."

Anyway she went on to inform me that her mom had never put her brother on seizure precautions and that her brother is in a bit of trouble right now.It seems that even though he is Epileptic he insisted on driving and had a seizure and killed a woman and severely disabled her daughter.

Talk about burying your head in the sand.She actually seemed to blame the victims in this case.
I could be like that ostrich and pretend that my kids don't have limitations and allow them to do whatever they want,but for one thing, I am their parent and it is my job to help guide and protect them.
Allow them to do anything at what cost?

This picture was taken the other day.It was a beautiful day and so we went for a walk down around the marina.Ariel and I went to the restroom and when I came out Daniel was down on this dock standing by the water.I had to explain to Daniel the risks of him being by the water unsupervised.He could very easily have had a seizure and fallen into that water and drowned.I will gladly take him down by the water if I or his older brother or father are there,so that if he had a seizure we could keep him from falling in.

As it was he had two very bad seizures that night.Daniel has had so many injuries from falling and getting hurt during one of his Generalized Tonic Clonics or (Grand Mals.) In this picture he had almost broken his nose.We have so many slings,shoulder immobilizers,neck braces,boots you name it in our closet from all the many injuries he's sustained through his seizures over the years.

        " I have Epilepsy it doesn't have me."
One of the reasons I have always despised this statement is because of the down playing the damage that seizures and Epilepsy do.They wonder why they barely get funding.
It's because of the misconception most people have.Most people think you take a pill and your seizures are controlled.

I understand this statement is sort of a state of mind thing, not letting your Epilepsy define you and all of that,but tell that to the parents of the kids that have died from S.U.D.E.P.(Sudden,Unexplained,Death in Epilepsy Patients) 

That's why people like The Hutchison's have worked so hard to educate the public on the risks of seizures.Because they were never told of the risk of SUDEP and unfortunately lost their precious daughter Chelsea in 2009.

They blessed us recently with EMFIT monitors that go under the kids beds to alert us in case they have a seizure in their sleep.

We try and let our kids have a full rich life to the best of their ability.I'll admit it does hurt when people seem to imply that having your kids on seizure precautions means you don't let them have a life or you are making them live their lives in a bubble.We want them to have a full life,but also a long life.


  1. I had my first seizure in August and I can sympathize. I am sure you do the best you know. I can feel the great love for your kids. Prayers sent your way for some seizure free days


  2. The very definition of the word intractable is unable to be controlled. Braden has Lennox Gastaut Syndrome which is characterized by intractable seizures.Those seizures have led to severe cognitive delays as well. There is NO escaping that fact. His safety is always my first priority. I let him live his life as fully as he is able while carefully considering risk factors for him. He will never be "normal" as many people view normal, but their are activities that are normal for him. He goes swimming and therapeutic horseback riding. But always, his seizures and the potential risks are taken into consideration. He loves to run around outside. Would I let him run free on the road or sidewalk? No because he tends to be unsteady and if he falls he could badly injure himself. However we go to a local park regularly where he can run all over the soft grass and if he stumbles he is protected from serious injury.Braden has an inherent right to be protected as does any child, until they can make those judgements for themselves. I recognize that he will never make those decisions. He doesn't have a lot of seizure free time, but with Lennox Gastaut I know he could seizure at any time, a short period of time without seizures can end in an instant. I would be devastated if I let my own desires for him to be 'normal' cause him to be injured.

  3. I really enjoyed reading your post. This is something that is new to our family and is going to be hard to adjust to. My two youngest children are 2 and 3. It is very difficult to restrict my youngest from doing things that his older brother gets to do. Because of his age, he doesn't understand why and gets very upset. I want my son to grow up strong and independent, but also aware and cautious.

  4. That's the key Monica is doing things within reason and having balance.It seems that some go too far in the extremes in either direction.Restricting their child so much that they don't have a life or having such a loosey goosey attitude that they just throw caution to the wind and let their child do anything, unfortunately to the childs detriment when they end up with a bunch of injuries that could have been avoided.