Epilepsy Update…

Today we had an appointment with the neurologist to discuss weaning the Phenobarbital and seeing if the Keppra will keep Meggers seizures at bay as a solo med.  TOTAL DISAPPOINTMENT!!  Let me go back to yesterday for a moment.. I get a call from the neurologists office to confirm our appointment for today telling me the visit would be a $25 co pay and oh by the way you have a $300 balance that needs to be paid in full (bill was for an EEG study she had done).  So I call the doctors office to ask if they would refuse to see her if I didn’t pay the $300?  A nice young man answers and after putting me on hold a few times tells me I need to pay at least half as well as my co pay to be seen.  I say are you kidding me?  Your telling me that you’d refuse my daughter, who’s in the middle of a med change you put her on, treatment if I don’t give you this money today?  At this point I’m getting angry and after being put on hold a few more times a new person gets on the line who says that I need to make some sort of payment towards the bill, which is entirely different, I can do that.  However, this leaves me with a sour taste in my mouth, it makes me think this doctor cares about the money and not the patient which brings me back to the appointment… 

So we arrive at the doctors office and are ushered back to a little room to wait for the doctor.  A lady walks in the room (whom I believe is a nurse practitioner that we’ve never seen before) and asks us how we’re doing?  We say fine, she sits down with a little computer and starts to ask us questions.  Meggers who’s excited to be at the doctors shoves her stuffed Cheeky Monkey webkin in the air and says “I brought Cheeky Monkey” looking at this doctor with wide happy eyes, excited, and desperate for a response.  This lady completely ignores Meg and talks over her asking us questions about her meds.  My husband gives me a look like is this woman for real.  She was sooo disconnected, after talking with us she decides because of Meggers medical history we should meet with the real doctor before we started the weaning process.  She gives Meggers a quick once over and sends us up to the front where they tell us we can’t get in to see the real doctor  for approx. three months.  Ummm… this appointment was supposed to discuss starting the weaning process, we were supposed to start during the summer so that she would be home if there were any problems.  So now we’re looking at weaning during the school year as if weaning isn’t scary enough, now we have to worry about breakthrough seizures happening at school.

I am soo disappointed!  This appointment was a complete waste of time, not to mention that we have to drive a little over an hour to get there and with gas prices these days… need I say more.  Why wasn’t this appointment with the real doctor?  Why is it that doctors offices have become so cold?  There is no familiarity or personal touch with doctors anymore, it more like they’re herding cattle and each steer has a dollar sign stamped on them.

On a positive note…. The neurologist whom we used to see is possibly coming back July 1st this year.  Dr. Winesett was the first neurologist that Meggers saw after her seizures began and he was an amazing doctor.  He cared, he listened, he was so easy to get a hold of, I don’t think I ever had to wait more than fifteen minutes for him to call me back, not an answering service.. him, he never made us feel as though we were a burden to him, he knew our file without opening it, and never refused us treatment due to an unpaid hospital bill.   When we received a letter that he was joining an Epilepsy Program affiliated with All Children’s Hospital and would be going to Cleavland Ohio to train for 6 moths to a year we were devastated!  He may not know it but we felt as though we’d lost not only an amazing doctor but a friend, someone who’d been there during some of the worst times in our lives.  He made living with epilepsy a lot easier because he was so caring and we had complete faith in him.  So you can understand why  when recently I happened across a newsletter that said Dr. Winesett would be joining the Epilepsy Program July 1st as the pediatric epileptologist and would develop the pediatric side of the program I was elated. 

Please keep your fingers crossed for us that he’s either going to start taking private patients again or that we will be able to see one of the doctors that may be under his direction.  I can’t tell you how at ease that would make me.

3 thoughts on “Epilepsy Update…

  1. What a terrible experience! As a paying ‘customer’ you think you’d have first rate access to treatment, not a bit of it seems. Is there a governing body who you could complain to and voice your concerns? This system is a real puzzle to me, it just seems that it’s a cash grab, and your children are not the priority at all. Disgraceful. That nurse ought to have stopped whilst you’re daughter was speaking! What a cold hearted miserable bitch she was. Pfft!

    Fingers crossed you’ll get the neurologist of choice. Perhaps you could contact him somehow to put your mind at rest? Here’s hoping for you Kirsty, and my best wishes for Meggers. xx

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  2. Thanks for the kind words and for stopping by my blog. I don’t think anyone would care if I complained to be honest. That’s why we’re hoping and praying that our original doctor is back. My husband said the same thing about the nurse, he said the doctors first priority should be making sure the child is comfortable, how can they treat your child if there’s no connection there? Ach well, what can ya do.

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