Emma's Grace

Just a quick note.

I was able to bring Emma home tonite. She is sleeping soundly in her own bed.

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…another visit to the hospital.

Our Christmas day was going well, but Emma seemed pretty tired.  Everyone else in the house has been sick lately, so we thought she was coming down with the family cold.  She did have a small seizure during the day, but it didn’t last long, and wasn’t much more than her drooling.  She was also running a slight fever, so got some ibuprofen.

She was taking a nap in the evening.  At dinner time, we went to check on her.  She was sound asleep.  Andi and I discussed that if she was fighting off a cold it was probably best to let her keep sleeping.  After the rest of us finished dinner, Andi went to wake Emma up so that she could have dinner and get her meds.  Andi found Emma in the middle of a seizure, her eyes and forehead twitching.  The Diastat seemed to bring her out of the seizure, but she still seemed off.  Either she was having another seizure, or she was just so wasted from the aftereffects of the seizures and the meds that she was zoned out.  Not wanting to take any chances, Andi took her off to the ER.

Emma has been dehydrated or nearly so the last few days, but it has been difficult to get her to drink anything, except when nursing.  Even then, she hasn’t been drinking a lot (mostly playing, as Andi says).  So at the hospital they put her on an IV to give her some fluids.

As of lunchtime, Emma hadn’t been having anymore seizures, but Andi was still waiting to see what the doctors wanted to do.  Several options were presented (try a new med, Video EEG, etc), but we really don’t want to start anything new without discussing with Emma’s neuro.  So now Matthew and I are home waiting to hear from Andi, and see how long little Emma will be in the hospital this time.

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… I took Emma to the hospital.

It was the beginning of a horrible holiday season.

We are very thankful today that we are not in the same place.  And our holidays are looking to be quiet and snow-filled.

*knock on wood*

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We spent Saturday at my family’s house having Christmas. And Emma had a couple of those small seizures. In our completely non-medical opinion, we think that she was on the edge of what level of medicine she needed and there were lots of camera flashes. It’s possible they set her off.

So, I increased her dosage like Dr McCormick instructed. I was hoping to not have to do that, but I’ll do whatever it takes to make her better.

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Finally, the seizures seem to have stopped.

Thursday I talked to Dr McCormick again.  She was still not happy about Emma’s seizures.  She recommended increasing Emma’s evening Topamax level again, putting her at 75mg in the morning and 90mg in the evening.  If that didn’t work over the weekend, we’d have to put her on another medication.  She was thinking Tripleptal since it does a great job with partial seizures.  And we’ll do a Topamax level at the beginning of next week to see how she’s doing.

I asked about putting her back on the Vigabatrin.  Dr McCormic said that we could go that route, but it’s more for IS patients.  I asked if she thought that Emma was done with the IS and we were looking at another form of epilepsy now.  She said that she believes that Emma is done with IS since her seizures aren’t clustering like they were previously.  From what I understand, her last couple of EEGs did not show the IS pattern, either.

So there’s a huge weight lifted.  We’ve survived IS and kicked it’s butt.

When I talked to the doctor, Emma was taking a nap.  Emma woke up and I never saw her drool again.  I’m still watching her, but still haven’t seen any signs of a seizure.  I decided to not increase her Topamax dosage.  I’m supposed to call and give an update to Dr McCormick on Monday.  I’ll let her know then and see what she says.  I know the bloodwork script is in the mail.  I’ll go get that taken care of next week before Christmas.

We’re hoping the seizures are gone for now.  Let’s all get thru Christmas and New Years safe and sound.

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So, after the weekend, Emma’s seizures still haven’t stopped.

I called her neuro this morning to see what we should do. I mentioned that Emma had a tooth break through yesterday. And I took her temperature and it came out to 99.3. Dr. McCormick suggested giving her a dose of motrin to stop the inflamation and cover any fever issues. If the seizures didn’t stop after that, I was to give her a Klonopin wafer. We are all hoping that it’s the teeth that is causing the seizures, with the inflamation, fever, and pain bringing out the seizures.

A couple of hours after the motrin, the seizures still hadn’t stopped. We went to school and stayed for 30 minutes. She had about 5 seizures in that time. I am not sure if the constant activity increased the number or not. Even with the seizures, she was doing some nice things while we worked with her. It was the most active she had been all weekend. She was even standing, with both feet flat on the floor, and her OT giving her support. But her feet were flat and her legs were straight. That doesn’t happen often.

So, I’ve given her a Klonopin wafer and we’ll see how that goes.

If it doesn’t work, then tomorrow we’ll increase her Topamax again. If that doesn’t work after a couple of days, we’ll have to consider putting her back on the Vigabatrin.

Right now, she’s bouncing around in her exersaucer and squealing. You’d never know her brain was going crazy.

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The seizures are back.

They started Thursday morning.  At first I wasn’t sure if she was seizing or if she was just making chewing motions because her teeth are still coming in.

But the same face, over and over again, convinced me.  The puckering lips.  The extreme amount of drool.  Lip smacking or chewing motion.

Thursday I waited and watched.  Jon didn’t get to see it.

Friday I called Dr. McCormick.  She recommended increasing her evening Topamax dose by 15mg.  I could give Emma her extra capsule in the morning and then start the increased evening dose on Saturday.

They continued Friday.

And Saturday morning.

They didn’t seem to be stopping.  So I contacted the on-call neuro.  He reminded me that it would take time for the new dose  to increase her actual levels.  I could split up the evening dose, 2 capsules at lunch and 3 at night, to try and help her along.  Which we did.

So now we wait another couple of days to see if it works.  If it doesn’t, I’ll increase her dose again.

These seizures are presenting different than previous.  They are very short.  30 seconds or so.  A few times she has started off and had a delayed response.  However, she mostly responds to stimuli, which is mostly me clapping, tapping her nose, or touching her face.  She doesn’t seem to be as sleepy as in previous times.

Hopefully this ends soon.  They aren’t much, but when you know what’s happening, it’s heartbreaking.

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Does anyone else find it ironic that we have a dog who has seizures? A dog who developed them only a few months after we got her. And we have no idea why she has them.

Whatchu lookin at?

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