Thursday, March 20, 2008

Status....Epilepticus

Yesterday was a great day. We only noticed about 3 minor seizures. Ava was in the best of moods, and the only problem was....it was raining outside (and Christian came home heartbroken about a snack sharing incident on the bus). Well, it was nothing a few silly comments from Mommy and a few laughs couldn't solve.

In fact, I even snuck in some much needed exercise time in, and the kids played at the YMCA for awhile. So I was trying to quietly sneak in the shower....and she caught me. The LaBonte shower/bath patrol.....banging on the door with her toys...."mommy..bath...me....".

When I opened the door and took one look at her hair and face I decided she must have looked in the mirror before asking to come in *LOL*. Anyway I was washing her hair and she was squirting water in my face and I noticed a jerk. Then her eyes deviated.....here we go again.... She was actually coherent and talking, so I was hoping it was a partial that would pass in a second or two.

In the matter of two minutes it turned into a full on tonic/clonic seizure. After 20mg's of Diazepam, we had to call the rescue. We're in status, so back to the hospital again.

Madison was circling Ava even though we asked her to go to her room, and she knows the drill. This time....she was very worried. So long story short...seizure broke right before we got to the hospital, 20 minutes total. O2 was great the whole time, no real fever (100.2); we were in and out in 2 hours and home by 11pm. , a good night for the Hasbro ER which was completely packed. I've come to the conclusion that there ARE some benefits to knowing everyone there!

No sooner we walked in the door, Madison threw up in her bed. Now mind you, this is not the first time this has happened. Madison has thrown up a few times on nights when Ava has seizures, and we actually have a pretty decent stock of Pepto for Madison! It's a pretty simple protocol, Ava has seizure, Madison needs Pepto.

So I let Madison take the day off from school today & spend it with me & Ava, and do some pukey laundry, but when I went to turn on the washer this morning....it was broken.

Am I still sleeping...or is this for real?????

So as soon as Ava woke up this morning I gave her the once over....hmmm...she looked a bit red, so I took her temp.....103.7. I was actually relieved, as sick as that sounds. There was a reason for the seizure, she's sick.....AGAIN. I did have them give her Tylenol in the ER, as anything over 100 deg. mixed with a seizure is preventative Tylenol time in our book. I also gave her some Motrin in the early a.m. just in case.

Now it's time to get out of my ratty robe, go pick up my scripts for Ava, wait for the repair man, make some keto meals and get on with the day.


We survived another status.

2 comments:

baby trevor's mommy said...

Hey Rebecca,

I've been meaning to leave a message or even call you...but somehow here I am still meaning to! Ugh!

How is Ava doing? I just can't believe another trip to the hospital!

It's weird too...I hope this makes sense...but it's like I can hear the growth (courage,bravery,whatevery) in the tone of your post. Even though our drama is no match for your's...or others...this is something I never thought I would have the courage to face.

Anyway...

I'm hoping your Easter was sweet & uneventful!

...danielle

JSmith5780 said...

I was so sorry to read this. I hope Ava is feeling better today. Austin peaked a high fever over the weekend and I sat there with bated breath waiting and hoping he'd be okay (can't blame Madison... this makes me sick to watch too!). Fortunately, he escaped unscathed.

Hope this is just a minor bump!
Jen

About Ava

Ava Simone LaBonte was born December 1, 2005, a healthy baby. She was a happy, healthy, normal baby until six months old, when we noticed some odd movements, which we thought were exagerated startles. Ava had her first EEG at 6 months, and it was normal. Six weeks following the EEG, Ava began having head drops....and we knew this time, something would show up.

At 8 months old, Ava was diagnosed with Infantile Spasms, a rare form of epilepsy. She was treated immediately with a 4 week course of ACTH. Ava spent 6 weeks "seizure free". All of Ava's MRI's, CT's, and blood tests have been "normal".

On November 20, 2006, Ava had a grand mal seizure which could not be stopped, and she was put in a drug induced coma. We left the hospital on antiepileptic medication, and have been on medication ever since. Ava is currently diagnosed with Generalized Epilepsy.


So far we've tried the following medications: ACTH, Trileptal, Keppra, B-6, Depakote, Carnitor, and currently on the Ketogenic Diet.