Emily has had a rough week so far seizure wise. She hasn't had any big seizures thank goodness, but it seems like non-stop small ones. Yesterday after she left school in the afternoon she had a seizure on the bus. Her head dropped down and didn't come back up. The bus driver pulled over and checked on her. She was breathing fine, but was completely unresponsive. She called dispatch and they said since Emily was breathing okay to take her back to school. When they got there her health tech came out and checked on her. She said her breathing was normal and her pulse was fine, although she was still nonresponsive. They decided it was safe to take her home on the bus, so she came home.
The bus driver was freaked out, and I guess she had a seizure on the morning bus ride as well yesterday. So we have two freaked out bus drivers. I totally understand, they can't be worrying about Emily's seizures while driving. It's not safe for them to constantly be looking in their rear view mirrors at her to make sure she's okay.
Emily has never had an aide on the bus, and she's ridden since the day she turned 3 years old. I called the school district this morning and spoke with the head of special education. Getting an aide on the bus is a long process but she is going to try and rush it through as urgent. Hopefully it won't take too long.
In light of the increase in seizures, I called to check on our UCLA follow-up appointment. When we were discharged on Nov. 10th, we were told to see our neuro in 2 months. Our appointment is set for Feb. 28th! That is NOT 2 months, that's almost 4 months! I was pissed when the lady was talking to me on the phone today. I told her that Emily is having more seizures than normal, as we wean the Trileptal. She is on Keppra and a small dose of Trileptal, and that's it. The Mysoline was weaned off when we were inpatient. We are supposed to start Felbatol or something, but I have no orders. We were supposed to get them at the 2 month appt ... which is now a four month appointment.
Her response was "Well, I recommend you email the doctor directly then and see what he says. I can't get you in any sooner".
Ugh. Her last comment was that perhaps I need to just take Emily to the UCLA emergency room and that way she will be admitted and see immediately. That is NOT a fun idea!
She seems to have a lot more seizures in her sleep now too. Almost every night she wakes up after 3 hours or so having a seizure. She continues to twitch for another hour or two before she goes back to sleep. This is not a great pattern! We are all exhausted, and it makes me wonder how much she seizes all night long.
I wish we could get in to the neuro quicker! Wish me luck that my email to him gets us somewhere.
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
13 comments:
So sorry Miss Emily :(
As for UCLA ... Did you talk to the scheduling department?If you were,well,they can be a real treat,if you know what I mean.I would recommend you calling the neurology department directly,it is a crazy menu list but get to the one to leave a message for a nurse and make sure they know she is having more seizures and you are concerned.A fellow or even the doctor and if nothing else,a nurse,should get back to you within 24 hours.I did have an issue a few months back.Left 2 messages,the 3rd was less than "sparkly"and wouldn't you know it,Dr.Shields,the big man himself,called me back.Just be persistent.
Sending prayers your way.
Oh, I am so sorry to read this. Seizures are the worst.
I just can't imagine, Sara. I'm praying for Emily's seizures and that she gets an aide for the bus ASAP. Hugs...
I'm so sorry to read this. We'll be praying for Emily.
I'm glad they are rushing to get her an aid on the bus - that seems really smart. I hope you can have the same luck getting seen by the neuro. UGH!
Ugh, stupid people. I would have ripped her head off. I know that sounds horrible, and isn't the way to go, but I'm so sick of rude people. Don't work in a freaking doctors office! Walk a day in our shoes! prayers coming!
Sorry about the increased seizures! They are not fun, and getting a call about your child having one on the bus is not fun either! It makes a Momma feel so helpless....actually seizures all together make me feel this way!
Gavin has been having lots of weird and little ones too and, quite frankly, I'm sick and tired of it all! Praying you can get some relief for Emily soon! Love and Hugs!
I'm so sorry to hear about the increase in seizures and the difficulty in getting an earlier appointment (we have an appt. with a doctor today that we waited 7 months for a make-up appointment with, but thankfully not of an urgent nature!).
I do have to say that it sounds like the afternoon bus driver did a fantastic job making sure everything was okay, and taking her back to school where there was a nurse. I'm glad to hear that you've got conscientious people looking out for her. I hope the aide can be obtained soon!
Something in the water I tell ya! 2 big seizures for Madie over thanksgiving..and still taunted by small jerks and twitches thru day..Its heartbreaking..
And the poor school is just covering themselves..already had ambulence called twice for Madie. Lets hope for some better days for our girls!
I am so, so sorry we have this in common...
There isn't a day that goes by that we are not riddled with seizures, and somehow it becomes the norm...never, ever an easy thing tho...wish there was the magic pill out there for both of our kids...
I am so sorry that Miss Emily's seizures are increasing! That is so frustrating!! I am thankful that she has such caring and aware bus drivers and attendants who notice her seizures and take proper action. I will pray that they can get her an aide quickly and without the usual special education red tape!
As for UCLA, I hate the gate keepers at specialists offices!! Gettng around them is the key! I hope e-mailing the doctor works - if not, try calling the drs nurse and leaving a message...or two. :) YOU are the expert in Emily!!
Just getting caught up.
I'm sorry to hear that Emily is having more seizures. Its so annoying that they always want us to bring our kids through the emergency room to be admitted.
Praying that the neuro will email you with some answers soon!!
Ugh -- I'm so sorry that you're facing the UCLA administrative nightmare machine.
I hope that since you've written this post, you've gotten somewhere. And I'm terribly sorry about Emily's continued seizures. We're in the same boat over here and I'm just about sick unto death over it --
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