Epilepsy Part III

Through my own stupidity, I missed this morning's neuro appointment.  Not only did I get yelled at when I called to see if we could still make it in, I had to make 4 calls to make another appointment because the first lady wouldn't make one for me.  Then, I got yelled at AGAIN by the scheduling lady and was told that we now have to go to the end of the line and wait until October 19th.  When I asked if I could get on a list for any cancellations, she told me that was, "doubtful as the list is very long."  I was so mad when I got off the phone that I was shaking.

So, I did a little research and called KU Med.  They were EXTREMELY nice on the phone...already a bonus.  The earliest they could get us in was September 2, but that's still 1 1/2 months before the other guy.  AND they put us on the cancellation list.  She couldn't guarantee us anything but said they'd try. 

Now, I'm just waiting to call our pediatrician to get Daniel's records transferred over to KU. 

And we wait again...

Epilepsy Part II

Since I'm writing this after midnight, I guess I can say that Daniel has his second opinion with the neurologist later this morning.  I'm really nervous but kind of excited at the same time.  This has just been the longest process...waiting 6 months just for the second opinion...and I'm hoping we can get this done and over with.  We're at 10 months since this whole thing began at our pediatrician.

I'm just so confused at to why all this stuff isn't lining up.  Why has Daniel had one abnormal regular EEG and one abnormal 24 (48) hour EEG with the spikes lining up in the correct area of the brain for seizure activity but nothing is wrong with that?  Why are they dismissing family history of this particular kind of seizure (this is where I really wish Mike had gotten tested, too)?  Why, if it was no big deal, did they keep us for 48 hours when the test was only supossed to be 24?  We were told you cannot "turn off" seizures and therefore it's ADD...which you can't "turn off" either.  Why is my child so special that he's the "1 in 100 that can walk around with these misfireings in his brain and it's nothing when 99 other people would have Epilepsy?"  But we were never able to push that stupid plunger when they happened.  Because of that he's fine...go home and wait for a real seizure.

I'm so mad that we were dismissed like that.  "He doesn't have Epilepsy so go home."  Awesome.

We, kind of, know this new neuro.  His son was Hannah's kindergarten Sunday School teacher.  Rabbi Vered, our educational rabbi, put us in contact with him.  After having a long conversation with Vered in the middle of Wal-Mart on a random day in January around midnight, she made sure she hooked us up the following Sunday after Family Service. 

I'm hoping that, at this time tomorrow, we have some answers.  I'll keep you posted. 

Boo-Ya! I Told You So!

We got our answer today. The pediatrician told us that Daniel's EEG was "abnormal and indicative of epilepsy." I told you it wasn't ADD. So his teacher can freaking bite me.

After school, I talked with the school counselor who wants me to let her know what the neurologist says so that if we need to start any kind of IEP proceedings, we can get that going. Also, so that we can start making modifications for him in the classroom. She's the one who, surprisingly, has been incredibly supportive and told me months ago that this diagnosis makes perfect sense. She wanted to know if I wanted her to tell his teacher to "take one thing off my plate." I told her no that I'd do it.

I ran down to find her in the classroom. When I told her the test was positive for epilepsy, she looked as though I'd hit her and her jaw hit the floor. She told me that she'd never seen Daniel have seizures and I told her that she had. When he goes blank, that's a seizure. I don't know if she's yet a believer but she'd better get her butt on the bandwagon.

Mike is livid with the school psychologist. He wants a sit-down with the principal, teacher, counselor and psychologist. He also wants an apology since the psychologist diagnosed Daniel with ADD, clinical depression and anxiety disorder. Of course, it's always behavioral, it can never be anything medical. Mike wants there to be more education on their part. I have to agree. It's far too easy to say that your kid doesn't pay attention so he has ADD. We could have gone that route and medicated him but I just knew that he wasn't.

And I'm not in denial. And I have an EEG to prove it.

So, we have an appointment with the pediatric neurologist at Children's Mercy on December 2. I thought that was pretty fast. We'll have more specifics then.