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!

I hate when the roller coaster goes downhill

I think that most (if not all) parents of special needs kids will tell you that raising them is like a roller coaster ride. Sometimes the ups and downs are back to back and you want to get off the ride. Other times the ride is just cruising along like a train, and then suddenly you are dropped a million feet and you can't wait for it to even out.

Before anyone gets worried, no - we didn't get the results back yet.

I don't know what the deal is, but I have had a really emotional week concerning Emily. Nothing has happened, but I just am unsettled. I have had quite a few dreams that I won't even describe, but were horrible. And I keep having random thoughts that make me want to throw up. This morning as I was brushing my teeth this thought popped into my head - "After Emily passes away I will only have one kid to get up and ready for school. I can't imagine ever waking up and not thinking of her smile first thing. Those days will suck".

Her life is not a given. Her prognosis is unknown, as she is undiagnosed. Everyone is pretty confident that she has some sort of mitochondrial disorder besides her SCAD Deficiency. She has epilepsy and microcephaly and on and on. I have no reason to think she's going anywhere any time soon .... but for some reason these thoughts have popped up all week. Maybe it's related to a new school year? She's a second grader, and still going into the kindergarten class. And in that kindergarten class, she is smaller than a lot of them physically and behind every single one of them developmentally. Hell, she's behind any 9-12 month old developmentally. While she is awesome and I love everything about her, this is so hard sometimes. She has not made any developmental growth in the last two years. She seems stuck where she is, and it frustrates the hell out of me. I want so much for her ...

Then there's this new thing she's doing in the mornings. Her head wobbles around and shakes and she looks like a bobble head. I emailed our neurologist about it but he said he isn't concerned. I think because he referred us to UCLA Epilepsy Center, he is just waiting now for them to take over her care. I wish someone could get to the bottom of Emily! I am uploading video of her head this morning. I hope you can see what I'm talking about. It's really obvious in person. This lasts for about an hour every morning after she wakes up.




I just wish the damn results were back. If it's Ethylmalonic Encephalopathy ... I don't even know. I don't have words.

Interupting all this tonsil talk to rant about seizures

I know, can we get a post of happiness? I will have one soon, whether I have to pull the happiness out of my assskkkkkmenomorequestions. ;)

So Peanut is still having seizures, even one the increased dosage of Keppra together with her Neurontin. I just shot of an email to the neurologist to let him know. He mentioned adding in Depakote, but our Metabolicist says no way. Evidently Depakote is NOT good with a metabolic disorder, as it affects the body's metabolism in general. So I emailed the neurologist that, and asked him what our next option is.

I hate seizures. I hate that she has them and we probably don't even notice most of them. When we see them, they are so short. Head drops that last seconds. The head drops down, her arms go up a bit, and then back to normal. Staring spells that last 5-10 seconds. So if we notice them and they're this quick, surely we miss some. When I'm driving, I can't see her. When she's sleeping, when she's on the school bus. The bus driver has seen a few of them, mostly bigger ones. I know these short ones aren't putting her in immediate danger, but it still breaks my heart.

I hope the neurologist has a good suggestion!