The Endless Seizure Disorder

I reposted about Epileptic seizures, cause now I have four kids, four different seizure disorders.  WOW!

We have Multi Focal, the most scary, Generalized, Tonic and Absence seizures.

And yet?  Life goes on.

Life is not filled with doubt, worry, or anxiety about someone having a seizure, as I know some other parents, and, epileptics are.

Epilepsy does not rule our household in any way, shape or form.

I could say that Autism tries to rule, but we believe we are the parents, even though sometimes, I want to go sit and cry in a corner.

When I became a foster parent, I did not want to foster anyone with anything like this, but, just as your own biological kids, sometimes they come with hidden stuff that shows up later.

Epilepsy showed up with my first biological when she was about twelve or thirteen hitting puberty.  Looking back it may have been what they now call “The Alice In Wonderland Syndrome.”

Alice in Wonderland syndrome is a disorienting neuropsychological condition that affects perception. People experience size distortion such as micropsia, macropsia, pelopsia, or teleopsia. Size distortion may occur of other sensory modalities.”

That is the technical description but what my eldest daughter experienced, was distortion in my size and closeness to her, along with how loud I was speaking.  She would go from thinking I was a giant to a dwarf in these episodes, and always thought I was yelling, when, as frightened as I was, that certainly was not the case.  She seemed to outgrow it, but at forty-four says when she is tired sometimes she has a mild version of this.  Now SHE WAS SCARY!

So, after having my younger sets of twins (related by birth mom) for seventeen and fifteen years, the diagnosis of each twin helped diagnose the others.

The grand mals’ were not as we are led to believe.  Each child has different Grand Mal seizures.

The last diagnosis of absence seizures was only found because of my then sixteen year old having an “out of the blue” seizure described in my former post.

I researched, well googled, cause google knows everything, about having seizures while sleeping.   Suddenly my child who could not stop bedwetting became obvious, which led to me demanding an EEG which proved he was having absence seizures.

All this to say, you are never alone and there is always help.

I am always here to talk, help in anyway.

Your child may not have epilepsy, but, dang I can tell you that is the least of what I have overcome with fostering and adopting children.

More of that to come.

Do you have something that you are seeing or “feeling in your gut” about your foster child?

Go here.

If you would like to read my first book about how we became foster/adoptive parents go here

 

 

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