Wednesday, October 29, 2014

Seiz(ure) The Day!

My wife and I have an 8 year-old boy with Autism. We have been through the wringer, experienced the highs and lows, and triumphed regarding services for the boy. State Regional Center, Insurance Company, School District, physicians, psychiatrists, and aide workers... we've seen them all. Our journey with my son is not a tale of woe of lack of services (yet), but rather a careful weaving and negotiating of which services are the most appropriate. Through it all, and looking forward, we are confident that we have the tools and Los Angeles has the resources, and we have the patience, and my boy has both the steadfast determination and endearing nature to make this journey the best it can be.

We are, at long last, and confidently, hopeful.

***

My wife was the first to say something. She came to me and said "have you ever noticed the baby girl rolling her eyes? There's something I don't like about it."

I started noticing it, too.

***

Absence seizures (formerly called petit mal seizures) affect about 1 in 500 people and are most common in children aged 5 to 15. Sudden increased electrical activity in the brain neurons, result in what is commonly seen as a staring spell of unconsciousness, usually lasting 3-10 seconds (more or less in some cases). They are usually harmless and mistaken for "daydreaming" in school aged children. About 70% of the time, the child simply "outgrows" them. There are very successful medications to eliminate them entirely with few side-effects.

About 25% of the time, however, they can develop into tonic-clonic (grand mal) seizures. Tonic-clonic seizures present more the way that most of us think epilepsy looks (brain activity accompanied with movement, convulsions, impaired speech, etc.). Untreated, they can, in rare cases, lead to permanent brain damage.

***

All of that information was from WebMD. I found pretty much the same information on Hopkins Medicine, Mayo Clinic, NIH, and even Wikipedia.

Where I didn't find any of that information was from my daughter's neurologist.

***

My wife refuses to take our daughter to the dentist. Not because she has any issues with dentistry, but rather she can't take her baby crying or scared, and, let's face it, the dentist can be a scary place. She has no problem taking the boy, however. So, somewhere in the parenting responsibility negotiations I drew the "taking the baby girl to the dentist" straw.

I could talk about that forever, but I need to speed this up.

So, we took Jade to her pediatrician and told him we were seeing what we thought were seizures. He agreed. He asked us to try to catch it on video and put in a referral to a neurologist to our health insurance company. There are no pediatric neurologists in our HMO network, so they would find one that accepted our insurance. It was approved. An appointment was made.

And we took our baby girl, our precious pride and joy, our perfect angel, here:


No. We did not. This "doctor" was not even licensed to treat children. An angry phone call was made and we were sent to another neurologist.

The office was a little nicer, yet still filthy. The doctor was friendly. He was sweet to Jade, and she was an awesome patient. He did a simple EEG and it confirmed the seizure activity. He told us this goes away 100% of the time and take these meds (wrote a prescription).

"What about side effects?" "What are seizures?" "If they are harmless, and go away 100% of the time, why do we medicate?" "Can you tell me more?" Were just a few of the questions we were asking... that went unanswered. He told us to start giving her the meds and come back in three weeks and he can answer all of our questions then...

"But, how do we dose up the meds"?

I was handed a piece of paper.

"I have a lot of patients to see today. Google this"


So, we will not be going back there either.

We called the insurance company again. We (with our pediatrician) have requested a "real" neurologist... in the neighborhood, not the cheapest quack on their payroll. We will have a "professional" EEG done at Children's hospital Los Angeles and do our on-going care with a new neurologist.

That has not been approved as of this blog.

Meanwhile... The seizures continue for this little angel.



***

As is the case with most of my blogs, I fully intended to write about how fucked up and wrong access to health care is in our country... But I'll save that because I want to end this about something else...

***

Jade, I promise you that your mother and I will get to the bottom of this. You are our precious baby girl and you deserve better. I am neither scared, nor intimidated, by this impending health care battle. You will thank your mother and I...

But thank your brother first.


That's right. The same one you jump for joy to see.

He is the one that has taught us all how to fight.


5 comments:

  1. What the freak? I am so not happy to hear this. Kisses to my precious children.

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  3. God I thought the Irish health care system was frightening til I read this. My autistic son also helped me to grow claws and a backbone...by nature I'm more a lover than a fighter but those claws come in handy now and again. Your daughter is beautiful and you will get there because you want to get there. Lots of love to your gorgeous family XXX

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  4. Ooooh, Jordan, this makes me want to cry. And scream. I'll be talking to you soon...this is Nancy, by the way, since I can't figure out that Select Profile thing. Not really anonymous.

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