Friday, November 12, 2010

Home from the hospital with some answers

We were inpatient for 4 days of continuous VEEG testing, and a PET scan. They end result is that Emily is having myoclonic and atonic seizures all day, every day. She has them so often that the neuro said "There's one. There's one. There's one" in between sentences while talking to us. Ugh.

There is no focal point for these seizures, they come from all over her brain. We didn't manage to capture any tonic/clonic seizures, so we don't know if the big ones have a focal point or not, but it doesn't really matter. We wouldn't put her through a resection or any other epilepsy brain surgery to try and control some of them, when she has so many others. The thought is that with so many small seizures, she is bound to have break-through big ones. So ... that's it. I am relieved she doesn't need brain surgery, but not so happy with the thought of her having seizures forever.

The biggest thing we got accomplished during this hospital stay was the actual diagnosis of Lennox-Gastaut Syndrome. It was mentioned to us in her last hospital stay, but wasn't verified. It was thought to be a casual thing thrown at her with no proof. Now it is official. Her EEG shows the classic slow spike-wave pattern of LGS.
We are weaning her off Trileptal, because it can INCREASE myoclonic and atonic seizures in LGS patients. Hello - we thought we were dealing with LGS a while ago, why did we get put on this med? We never had atonic seizures until we started it. So there is a possibility that some of her small seizures may actually decrease, as we wean this med.

If she continues to have seizures or has more when we wean the Trileptal, then we are going to try her on Felbatol. If that doesn't help, there was another med mentioned but I can't remember the name of it. The problem is that it is not FDA approved. You have to get it from a pharmacy in New York that imports it to the US, and pay cash for it. Insurance won't cover it. I don't even remember what it's called, but financially this is not an option for us. So if we need a new med, I pray that the Felbatol helps.

As I am typing this, she had four atonic seizures. She literally just fell over while sitting up and watching TV. It's heart breaking. I hate seizures.

At least we have an answer to this portion of the Emily Puzzle. We are still waiting on lab work that was sent out testing for Tuberous Sclerosis, Cornelia deLange Syndrome, and the SCN1 gene.


Lacey said...

So they got lots of info, but no real drugs that will be the saving grace. That stinks! Its so nice to have answers though, and hopefully weaning the trileptal will help!

Colleen said...

Wow, I'm glad you are getting some answers and that you might be able to get her on the right seizure meds. Hugs!

Emma said...

Glad you got some answers! Even more glad Miss Em doesn't need surgery!! Did you get the results to the testing for that EE thing you looked into a few months ago? (I have no idea how you spell it, not gonna even try)

Sarah said...

poor Emily. it breaks my heart that she is having so many seizures. What about the VNS? <--- I think Vagus Nerve Stimulartor? right? Works kind of like a pacemaker for the brain. Have you guys talked about that?

I really hope that the new seizure medications work. Q is on Trileptal! but i'm pretty certain that she does not have LGS.

Thinking of you i'm so glad you guys got some answers.

Zoey's mom said...

Been waiting on an update.Have thought of you often and was praying that Emily was weathering the days okay.And so hoping your stay was going as best as it could be,in a hospital.

Some answers.I think that is a good thing.Makes it easier to go to a game plan and it sounds as if you have one or the beginning makings of one.

We went through a pharmacy in New York for one of Zoey's seizure meds.Expensive and in the end,didn't work.Really praying that a reduction will yield better results.

So sorry Emily has to go through this daily.Beyond hard to watch,as a mother.Praying,praying,praying that these things can be brought under control.

Alison said...

I'm glad you got an answer, but sorry to hear that there is no easy solution. I really hope the change of meds works well for her and that you don't have to consider the really expensive drug.

Bethany said...

I am so glad that you were able to receive some answers, but I am sorry that they are ones that come with so much heartache. I will pray that weaning her from the Trileptal will stop the atonic seixures and give her some relief. She is a puzzle, but such a beautiful and joyful little puzzle.

Rebecca Jackson said...

So glad you got some sorry you have so many more questions with regards to medications. Love her curly hair flopping over the bandages on her head. Too cute!

Bronx Cataldo's said...

What a beautiful little girl you have. Sorry about the LGS diagnoses my son has LGS too. Has anyone suggested the Keto Diet? THat was the one thing that stopped the drop seizures for our Finnian.

connie said...

Oh, man, I hated reading "there's another one, there's another one." And that you were told it's all the time. Answers, but ones that hurt. I am praying, believe me, that you find something that works well. They say it's just trial and error sometimes (most times). I hate that. I really, really wanted to do the keto diet using blended foods, because formula wasn't an option (intolerace to milk & soy formulas), but we never got to that point, because no one would agree to oversee it. I have heard sometimes it's really helpful; Emily's mostly (or solely?) tube-fed, right? I think that could be easier than doing it with a child who's orally fed. But if she can't take formulas, it's supposed to be lots of work (and I think you still do blended?).

Ha - lost of work. As if that ever stopped us, right?


Sometimes just having an answer is valuable even if there is no quick fix. I'm glad you have more information and can now steer in the correct medication direction. The Teenager was put on a medication for her night terrors that makes night terrors worse. Found out from another MD. Grrrrrr! I hate seizures too! Praying for sweet Emily and mommy, too.

Lori Osero said...

Stopping by to say HI Emily. I'm so sorry that you are having so many seizures. My heart breaks knowing that. I am grateful that your awesome mom is getting some answers (even as difficult as they can be) to help care for you. (HUGS) n kisses heading your way from your us. Take Care!

The VW's said...

Sorry you didn't get better news, but I'm glad she doesn't need brain surgery too! I hope with this new info they will be able to control her seizures somehow, because seizures seriously STINK!!! Love and Big Hugs!!!

Annie Sullivan said...

My daughter, Annie, has LGS as a result of a hypoxic brain injury secondary to undiagnosed Addison's Disease. Funny how all that rolls off the tongue now. Anyway--we've tried Keto, and now Annie has a VNS. She also takes Banzel, which is also known as Rufinimide, for atonic seizures. It has worked well...although we do get breakthrough seizures--about one every other day.
Re: metabolic issues--has your doctor ever investigated Mitochondrial disease? I guess if you have 3 systems affected, that mitochondrial disease should be suspected.
Anyway--you've got a beautiful daughter--even with all the extra challenges, these complicated kids are so darn cute!


HollyDoll said...

I have been thinking about Emily and you. I hadn't had a chance to really get on and check blogs to see how her testing went. I am so sorry to hear about the results of the testing but it is a relief to have answers! I will continue to keep y'all in my prayers!

Love - Holly