Wednesday, February 23, 2011

February is already half way over ..

That means we are almost one month closer to summer! Which means I am almost one month closer to NOT being PTO president anymore! LOL I am soooo over this.

In more pertinent news, Emily is going to the neurologist on Monday for a follow-up. We haven't actually seen our neuro since she got the diagnosis of Lennox-Gastaut Syndrome back in November. We have been inpatient since then and seen his partner (who is fantastic), but we haven't been back to his office since then. I have quite a few questions and concerns for him, so I hope he's prepared for us!

Emily is having such insane rage episodes. She gets SO angry. She screeches and cries and pulls her hair or glasses or whelchair straps or whatever she can get her hands on. She scratches herself, or whoever's holding her, or whatever she can reach. She flings things if you try to give her a toy to distract her. And the worst is the biting. She bites constantly. If you try and soothe her during these episodes, you will get bitten. She has bitten my shoulder, my head, my ear, my hands, my arms, my thigh, even my boob. Ouch. :( The worst part is that she is biting herself now when she's in a rage. Both of her sweet little hands have tooth marks on them. :( I know that Keppra has rage as a known side affect, but she's been on Keppra for over a year. This problem has been getting worse and worse for the last few months, but the last two months have gotten unbearable. She's on Banzel also, and then Klonopin and Diastat as rescue meds for seizures. It's just out of control now, and I definitely am going to talk to the neurologist about it. She can't continue to bite us or herself!

Her seizures are about the same. The Banzel really has helped reduce the number of drop seizures she has, but she still has them daily. And her myoclonics and absense seizures are just as bad. This weekend was terrible, it was one seizure after another. There's no use going to the ER for this, as all they do is say "Well she is always going to have seizures". It's frustrating.

We are still waiting on authorization for her VNS placement. I know it's not a guarantee that it will help and I am not putting TOO much hope in it, so that we won't be too disappointed if it doesn't work. But I can't help but pray that it does slow the seizures down. They are slowly taking Emily from us.

In happier news, Emily got part of her Make a Wish already, and the rest is coming next week! She got her Sleep Safe Bed on Friday, and the EmFit monitor. It is SO nice to have a big, safe bed for her to be in at night. What a relief it is! We haven't playing with the EmFit monitor enough yet to know if it is awesome or not, but I'm excited about it. This weekend we will spend time figuring it out. The rest of her wish comes next Wednesday, with her formal presentation. They are bringing some storage solutions, decor, etc. It is SO fantastic! Thank you, Make a Wish!!

Emily has a lot of appointments coming up. The neuro is Monday, then metabolics on Thursday, and then next Friday she sees the geneticist. We haven't seen her in 4 years, and I am sure she will be no closer to getting us "the answer" to Emily's medical problems, but it's always good to see her ocassionally. Lastly, Jacob is finally getting into the neurologist for his facial tic/twitch. I am hopeful that the neuro will be able to help him.

It is a cold and rainy week here in So Cal, and I am ready for summer! (Then I will complain about the heat, and how it increases Emily's seizures, but at least we won't need to wear jackets every where we go!) I hope you all have a good weekend coming up. We are going to spend some time cleaning the house and organizing Emily's room with her new furniture!


Becca said...


Happy for her new bed, sad for the biting and acting out. I hope someone can give you answers soon.

Bugg's mama said...

That bed ROCKS! Wow!!!

We know the biting thing. Dreadful!

Alison said...

The bed looks great. I can't wait to see the rest of her room when it is finished.

Colleen said...

That's a great bed. We are due to check into that since mr. man is outgrowing his crib. I'm sorry to hear about the biting, poor girl and poor you!

Elizabeth said...

Hugs to you. I'm sorry that you're enduring all of this, that your little girl is suffering so. I have to believe that she's on too many drugs, the wrong drugs, etc. You know it's all a crap shoot at a certain point and for whatever it's worth, I'd think about cleaning her up with all the medication changes before doing anything else. I hope that VNS is the thing for her -- I know of several children who have really benefited from having it in. I am praying for you all --

Lacey said...

Ohh, whats the monitor? Me and Heather were just talking about visual monitors so we can see our kids!
I feel so bad for you because I was once in your place. Jax had seizures constantly. I was going through diastat like candy! He still has constant seizures, but since they are mostly brain and not visual, we don't see them to freak out. He has been having more seizures, and they are longer ones, so I'm getting worried that we are slowly building seizures back up again, and we can't go back into status again. There's no way he would survive that! The doctors always tell us that he will just have seizures, thats what he does. I so hate that phrase I could scream! I hope the people at UCLA don't say that, because I'm hopeful they can help Jax when we get down there as well!

Zoey's mom said...

I love that I am FB friends with you so I have seen the updates but I hate the updates.Does that make sense?Well,all except the big,beautiful bed.Now that,that I liked.

What I absolutely cannot stand,is that Emily has to endure these things.Constantly.So not fair.So really and truly,not fair.

Praying that Monday yields some answers.Or at least a plan.


I'm catching up on your blog finally. Been so far behind in my reading and missed you! Fantastic bedroom...Love the pink and the bed is simply awesome! I am so sorry about the rages. It's so hard to deal with especially when they hurt
themselves. The Teenager could not tolerate the Keppra. She was on for about two months and awful personality changes. Unfortunately she is having more seizures...and more. One this morning. It's awful.