Seizures, EEGs, Meds & Why I'm Not A Big Fan Of Neurologists…
July 8, 2012
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Now Reading: Seizures, EEGs, Meds & Why I'm Not A Big Fan Of Neurologists…
July 8, 2012
Many have asked how Kyle’s doing on his new anti-seizure med. Have we seen any more seizures.
So here’s the long story…
So, as many of you know Kyle had a bunch of seizures in mid-May. We spent a couple of days in the hospital. You can read more about that HERE.
While in the hospital they did some tests and an EEG and they saw some complex partial seizures (what I call the big seizures) and some silent / absence seizures (what I call the staring off into space / zoning out seizures).
They put us on an anti seizure medicine (Trileptal 300mg x twice a day) and sent us on our way.
And we were told to make a followup appointment with the neurologist we met at the hospital after 4 weeks on the new med to see how things are going.
So after 2 weeks we got Kyle’s blood drawn and made an appointment to see the neurologist at the 4 week mark.
This neurologist seemed fine and he was affiliated with the hospital we went to and we had a GREAT experience at the hospital with the staff and with the EEG technicians.
So we get to our 4 week appointment with our neurologist, let’s call him Dr P.
He takes us in about 40 minutes late, ok no problem I’m used to that. And he starts asking us questions as if he’s never met us before “why are you here today?” we explain. “what med did I put him on?” “did you get a blood test?”
Then he stops himself and says “let me grab his chart to refresh my memory and I’ll be right back”.
GREAT IDEA! JEEZ!
10 minutes later he comes back and it finally feels like a regular appointment. “Blood looks fine.” “Have you seen any more seizures?” “What med side effects have you seen?”
After 10 minutes of chatting like this he recommends that we have another EEG in the next few days to compare this new one to the one last month to see if the med is working.
We tell him about our great experience with a certain EEG technician at the hospital. He said her name was Karen and that we should ask for her when making the appointment. He also says that this should be a sleep deprived EEG.
My wife calls to make the appointment. We make it for Tuesday June 26. Karen doesn’t get in til 10am so we get a 10:30am appointment. They explain that we should keep him up til about midnight Monday night. Let him sleep from midnight – 5am. Then wake him up at 5am. Give him his normal meds at their normal time (7am) and then give him 50mg of benadryl and 3mg melatonin just as we are entering the hospital for the appointment.
So Monday night June 25th we invite my mom & my inlaws over for dinner so they can help keep him awake. He’s having a great time, but around 9pm he’s looking sleepy and probably thinking “what the heck is going on here. Why isn’t dad taking me to bed?”
Our folks leave around 10pm and Kyle just can’t stay awake past 10:45pm. Mommy’s singing to him, blasting his fav shows on the tv, but he curled up on the couch and went to sleep.
I carried him upstairs, put him in bed and set our alarm clock for 4am.
At 4am I wake up and take the graveyards shift with Kyle. I wake him up and he’s like WTF? I drag him downstairs, make a bag of popcorn and force him to stay awake. The first 45 minutes were tough. But once Elmo’s World came on, he started jumping on his big green ball and he was up as a pup.
Me? I was tired, so at 6am I woke up the wife and she took the 6-8am shift while I went back to sleep.
At 8 I got up and we all went out to IHOP for pancakes and bacon. Kyle ate A LOT of bacon! 🙂
We made it to the hospital at 10am, gave him the benadryl and melatonin while waiting in admitting, got whisked right to the EEG place where Karen is waiting for us.
By 10:30am he’s fast asleep, but not asleep enough that he’s not going to flinch or grab when someone tries to glue and attach 20+ leads to his head.
So with Karens help we basically swaddled / pappoosed / wrapped him up like a mummy with packing tape and all!
Once wrapped she got the leads on uneventfully and started the EEG. It was basically 20 minutes of data of him sleeping, 20 minutes of data as we tried to rouse him awake, and 10 minutes of data with a strobe light flashing in his face.
During the strobe light portion he really looked like he had a seizure. He zoned out for a good 15-20 seconds.
And the technician Karen was dropping hints that she saw something on the EEG by saying things like “you better get him used to this process cuz you might be back here soon…”
Anyway, test over. We were home by about 12:30pm. I had taken the whole day off from work so me and the wife traded naps again for a few hours. Mr Kyle, all drugged up on benadryl? He was a little loopy, but no he didn’t nap.
At around 5pm I say to the wife “you should call the neurologist, Dr P, just to let him know that Kyle had the EEG today so he can know to check it out soon.
Before she can call Dr P calls the wife to say that he’s “at the hospital, looking at Kyle’s EEG. I see some spikes. We will probably need to tweak his meds, but let me get back to my office and compare it to the previous EEG and I’ll call you back.”
That was Tuesday June 26. And we didn’t hear from Dr. P again for the rest of that week. We couldn’t reach him. Couldn’t get ahold of that MFer. My wife and I left messages at all his offices, at the hospital, with his service, ask for him to be paged, etc.
We don’t know what spikes mean? We don’t know if that’s serious. Just call us back man!
Friday 7pm he calls the wife’s cell. They must have paged him again to call her He starts asking her questions to refresh his memory. “When was his EEG? What did I say? Oh yeah
I still need to compare the two. I’ll call you back…”
And of course we don’t hear from this guy again the whole weekend.
Meanwhile on Sunday we go out to dinner at an outdoor restaurant with Kyle and my mom. And I don’t know if it was the heat or he was extra tired or what but he seemed to zone out a lot at that restaraunt. Were those absence seizures?
Finally on Monday at 8:30am Dr P called my cell phone (probably returning one of the 6 msgs I left).
And he finally gives me the details. He saw some spikes on the EEG, not seizures but spikes and he wants us to go up to 450mg of Trileptal x twice a day. We should check his blood again after one week at the new dose.
That’s it. I guess it wasn’t all that scary after all but the dude left us hanging for 6 fking days! WTF? I tried to get angry and make him feel guilty but because he’s from another country and he has a thick accent I don’t think he was getting or comprehending my anger.
So that’s my story. I don’t think Kyle’s been having any seizures but who knows. But he has been in an awesome mood and has been sleeping great. I think the combo of the Klonopin and the Trileptal are working nicely for Kyle.
That’s it. That’s my long followup story about his seizures.
And one more thing about neurologists.
We really have no use for them. Unless Kyle is getting brain surgery (godforbid) a neurologist gives us nothing with regards to autism and now with regards to seizures and epilepsy.
We used a world renowned NYC neurologist years ago to get a formal autism diagnosis. We knew Kyle was autistic already but someone suggested having a neurologist officially diagnose him so we’d have it in his records in case a school district ever gave us any problems.
After filling out a huge patient history form in advance we get interviewed by this world renowned dr’s intern who asks us all the same questions that were on the patient history form. She looks at Kyle for 5 minutes and leaves the room to speak to the big guy.
The big neurologist comes in looks at Kyle for 5 minutes asks what kind of services is he getting and then pretty much says “he had a big head, he walks on his toes and he doesn’t point. He’s autistic.”
But here’s the kicker. He then says. “come back and make a followup appointment to see me in 6 months”.
For what?! We got what we need from you. Write up that report saying he’s autistic and hopefully we’ll never ever see you again cuz neurologists have nothing to do with autism. There’s nothing more we can get out of then.
Our parents always ask “what did the neurologist say?” like he’s gonna have some amazing new approach or road to send us on but no they are there to confirm that your kid is autistic and tell you that you seem like you’re getting all the right services for him so good job mom and dad.
And now with the seizures and epilepsy I thought the neurologist would play a more crucial role, but so far, nope. Just like autism, epilepsy seems to be a crapshoot. The neurologists are there to read the EEGs, confirm that yes he’s having seizures, and to recommend and tweak meds. That’s about it.
I was hoping for a thorough indoctrination into the world of epilepsy. Some talk about the things that trigger seizures. Nope. Nothing. “it’s different for each person. Just try to watch him closely.”
Needless to say we will be changing neurologists. Dr P is getting the boot. But I’m not expecting much more from whoever we replace him with. Neurologists don’t seem to have much to offer us.
I’m done. I’m rambling as usual. This is really 2 posts in one. I should probably pull out my theories on neurologists and make a separate post about it, but maybe later. I’m tired.
The main takeaways from this post are (1) that Kyle is doing great and is adjusting well to the anti seizure meds and (2) I’m not a big fan of neurologists.
The end. Over and out.
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).