Wednesday, April 6, 2011

The one about EPGP

I love these photos of my boys cruisin' around the house in their new car. :) The last one is extra special to me. I was shooting the pictures and realized Dawson was having a little seizure. Knowing he was in a safe place, I watched as his big brother put his arm around him, pulled him close for support, saying "It's ok. I gotcha Daws. I'm here." So glad I have that picture. So glad they have each other.

EPGP is short for "Epilepsy Phenome Genome Project." It is the largest ever research project done for epilepsy that is going on RIGHT NOW. We are so excited it is being done and that we can be a part of it!!!

They are studying the genes and symptoms of siblings that have Idiopathic Epilepsy- or seizures without a cause. There aren't any immediate results for us, but long term this has awesome potential for anyone with epilepsy and their families.

We've done the paperwork to release our hospital records/MRI's and EEG, the kids have to have some blood drawn, and now I'm getting through the phone interview portion of it. It's supposed to take aprox 2-4 hours, but I've got 3 kids . . . so it's kinda long. Yesterday morning I was on the phone for a couple hours, mostly talking about the specific symptoms of Halle's seizures. I wasn't prepared for the sudden emotion that kicked me in the gut. Maybe I should have expected it but I felt totally drained and depressed the rest of the day. However, I am not complaining. I just am SO GRATEFUL they are actively working on figuring things out.

While I'm on the topic, here's some updates for all you sweet friends who've asked how the kids are doing:

DAWSON still has 5-10 seizures every day. They are short, only 10-30 seconds, and the head dropping is a lot better (mostly). This is a HUGE Deal for us. With him crawling around, up/down stairs, etc it's so nice that I don't hear that familiar *crack* of his head whacking the floor, table, or whatever. It also has been great for him to be able to sleep in his own bed (mostly) since I know he won't get hurt on the crib's railing. We both are getting a lot better sleep which makes a huge difference in every other part of our lives.

For a couple weeks the head drop was totally gone, but the last maybe 2 weeks it has been coming back. It is slowly getting worse but as of right now it's more like smalls nods as opposed to complete loss of muscle control.

So far he has not done well on the medication. 3 times we have started it and he's got a high fever within 24 hours. For now, where the seizures are so mild, Kevin and I feel more comfortable with the seizures than adding medication to the situation. These meds are not for under age 2 anyway, since they have no idea how it could affect the quickly developing brain of an infant. This makes us extremely uneasy. So if they start getting more severe we'll have to decide where to go from there, but that's where we are now.

DREW still hasn't had a for-sure seizure since we got it under control. I can't tell you how nice it is to not be c.o.n.s.t.a.n.t.l.y. scared of what he's going to fall off of and where he is. Of course, especially when he laughs, I have that habit-like-reminder and fear that it's back- but so far (except for twice) they've all been him just laughing. (About a month ago, it happened twice where both Halle and I weren't sure. Out of the blue he burst out laughing about nothing for 3o seconds or so. Afterward he said nothing was funny and didn't want to talk about it. No other symptoms. Made me nervous for a few days but nothing else happened)

Also he has had a tic-like-jerk thing going on for about 3-4 weeks now which has me on edge a little. Sometimes during the day it's pretty obvious, other times it's gone. We don't know if this is related to the epilepsy or what. I know sometimes at this age it can be a normal thing. It is frustrating, the not knowing. I hate being paranoid, but I don't know how not to be anymore.

HALLE is still seizure free since our ward fast in 2007. She does have tics which come and go but we try to down play them as much as possible. I've noticed that when it's pointed out to her, she gets worried and then it gets severe and takes longer for it to go away. Sounds like an easy solution but sometimes it's REALLY hard to not let it get to me. A *sniff-grunt* tic for example, came back in December. It really grated on my nerves- especially with the boys' seizures going on around the clock- to have her repetitively make a similar type of sound that she'd made in her seizures- it was just extremely hard. It played on my fears over and over and over all day, every couple seconds. . . sometimes I just had to shut myself in my room for a minute to just breathe. Lame. She's doing well now though and I'm grateful. I wish I knew how to handle it better when it comes. bleh.

She hasn't had a migraine for probably two months now. (yay) She does get headaches if she's stressed or doesn't get enough sleep. We stick pretty tight to her bedtime, and giving her ibuprofen at the start of the headache has been effective in keeping them under control. Just like in Drew's situation, it's frustrating to know that it CAN be related to epilepsy but it might not be too. Feeling dumb for being so paranoid.


Anyway, that's kind of a summary of all the negative stuff. I have to add that OVERALL we are VERY HAPPY with how well they are doing. We are very, very grateful. It's such a good feeling to be back to the everyday stuff. I do not take any "normal" day for granted. I've learned a LOT about priorities- things that matter, things that don't. Just like any trial, I wouldn't CHOOSE it, but I'm glad for the lessons learned. I'm so glad that Kev is so supportive and by my side- even when he's rarely home. I couldn't have survived the last 5 months without him. I have to say, we make a pretty good team.

And REALLY great kids. :)


Haley Hatch Freeman said...

I'm so glad you posted this update. I've been thinking about you guys and wondering how things were going with the boy's condition.
I'm so sorry you guys have had to go through these scary times. Love, prayers , and hugs go your way!!

Keri Crossley said...

I love reading your blog, Mari! These scary things seem to have made you stronger and your family stronger together. You are a fabulous and inspirational mommy!!

The Shelton Family said...

Mari, I am so sad you have to go through this:( I really do think all your kids are so stinkin' cute and they are so lucky to have you for a mom.

kate said...

i pushed "next blog" at the top of my blog and yours popped up. i read the part about your older son comforting the younger as he had a small seizure...i'm still tearing up. what an incredible older brother. you must be an incredible mother to instill such kindness and gentleness in your children. I wish you seizure free day and more wonderful opportunities for great pictures!

Jewels said...

Mari, this was such a great update! I have been thinking of you guys so much lately and wondered how all your sweet kids have been doing. I'm thrilled to hear about the research, it sounds like you're doing everything right! Love you so much, lets get our boys together soon!

JLB said...

Just had to say your photos are great

HeadLine said...

Really nice car :) great photos

Britt Bernatchez said...

Hay girl. Thanks for this wonderful post. I just started writing a blog so I decided to browse other blogs and I am so glad I stumbbled upon yours. It is really refreshing to read posts that talk about real life. Too often I find people living in a suspension of reality and trying to act like everything is peachy. So I admire you embracing life as it is and facing the set backs head on. I can see how strong you are and how much you care about your family and as your children get older they will see that too. You and your wonderful family are in my thoughts and prayers. Britt :)