Monday, November 2, 2009


Well, as expected Luke's new med, Vigabatrin came in the mail this week. We started him on his first dose on Sunday. He has to gradually work up to a full dose. Right now he's taking 25% of a full dose. The medicine is very easy to give....just powder that we add to his bottle. We are still seeing the spasms. We'll know it's working when the spasms stop and then the EEG reads normal. If the med is going to work, they say it'll work soon. And by "soon", I think they mean within a month or two. This med is only for the purpose of stopping the spasms (which look like small startles). From what I understand, that is just the first step. And then we'll fight more/different battles from there.
Heard from our wonderful doctors in St. Louis. Dr. Guilliams called at 9 pm one evening, "just to check in on Luke". That makes a heart get a call from a doctor 3 hours away who cares enough just to check in with you! We will go back to St. Louis on Nov. 13th. They'll be doing a spinal tap to run more test, taking blood for lab tests and doing another EEG. We'll make another trip there the day before Thanksgiving for another check up.

Andrew and I are doing ok. When I talk to people about the whole thing, inevitably the conversation turns to all of the obstacles Luke has already come through. Everyone can see God's hand on his life....not only in the fact that he's come through multiple surgeries, been healed of illnesses and miraculously developed skills some thought he never would, but also just in the ways God has directed our steps and led us to the right diagnosis and the right treatment. Looking back on what God has done brings a lot peace. It makes it easier to trust that God is still the same God and he won't leave us now. Still, at certain moments, and sometimes unexpectedly, we are gripped by fear....fear of the unknown, fear of the seizures returning, fear of what life will look like for Luke, fear of not being strong enough to walk this road.
We do know this--We'll never be able to see tomorrow until it gets here and tomorrow may bring something completely unexpected. I mean...that's hardly a new revelation. If you've lived longer than a day, you know that sometimes what you think will happen, doesn't and what you never imagined would happen, does. And I guess when it comes down to it, what would faith be anyway if we had all the faith at all!
A friend of ours, Becky Rhoades, recently sent a note to our inbox and all it said was "I prayed for you this morning and clearly felt impressed to tell you, 'God is with you'. That's it...just remember and remind yourselves often, 'God is with us'".
So simple....but what more could you ask for really? Yes, I'm afraid, yes, I feel weak, yes, I don't know what tomorrow will bring. But whatever it brings, God will be with me.


  1. Glad you got the vigabatrin. I hope it helps. How high are they willing to take the med? Some doctors are conservative and won't go above 125 mg/kg, other neuros will press close to 200 mg/kg. Make sure Luke is drinking the entire bottle so he's getting the full dose!

    For us, the biggest side effect was restlessness. Especially during the night. Austin never slept through the night while on Vigabatrin. It's not a pleasant side effect, but it's manageable.

    If you need anything, let me know. Also, if you hop over to my blog, you will see links to many other IS family blogs.

    My thoughts are with you.

    P.S. If you find the laundry fairy.... send her to NY!

  2. Hey Jen!!!
    I cannot tell you how thankful I am to have made contact with you!! Really helps to know someone who has been down this road. I've already made contact with two other families here in this area who have walked the IS road, but both of them used ACTH only. Support means EVERYHING!!!

    Ok, good to know about the side effects. Luke is on a loading dose of 250 mg for three days and then will gradually get up to 1000 mg per day. I'm trying to think how many kg he weighs. 22 10 kg? Right? That would be....I'm gonna have to pull out the calculator. Ha!
    Well, it's not even 125 mg per kg. hhhmmmm? Ok, we'll have to ask about that next time we head to St. Louis.
    Yea, we only mix the meds with a four ounces so he's SURE to take to it all and then can feed him more later. Oh yeah, we'll been caught many times struggling to get him to take the full bottle "cause it has meds in it". We've learned our lesson! :)

    So, when you say Austin responded in four days....but then he was on Vigab for 3.5 years. Did they come back? What other anti-seizure meds did he use? We're increasing his Topamax now too..

    The laundry fairy has abandoned me and probably won't return for another 18 years!! HA! You have 3 boys!!!! They are adorable by the way. :)

  3. Glad you connected with some local families. Sometimes it's nice to have someone right near by.

    Austin was SF by day 4 of Vig. he was also on a lowish dose of Topamax at the time. He stayed on the Vig for 8 months, SF the entire time. We weaned him off the Vig and left him on the Top. Within about 2 weeks I noticed Austin was "off". we did an EEG and saw some spiking. We decided to leave things be for a bit because he was finally starting to develop again. 4 months of the Vig and he started having what appeared to be clonic seizures (which are very rare to have by themselves). We already had a plan in place (and a stash of Vig) so we strated him back on it immediately. He remained on it for another 2.5 years or so. I never felt brave enough to remove it, though I did finally wean the Top because it was a tiny dose and I felt it wasn't doing anything other than to affect his eating and cause him to overheat.

    We finally removed the Vig also. He's had an occasional complex partial and some possible absence, both nothing consistent enough to warrant re-starting medications. We kind of take things month by month right now and still see the neuro every 6 months. Right now is probably the most stable he's ever been.

    Feel free to ask a million questions.

    As for the dosing, I think the FDA warnings have many neuros walking on eggshells with the Vig, unsure how high to go. You need to trust your neuro, but at the same time make sure you've literally pushed it as far as you can so you can truly know it's not THE med for Luke. You don't want to second guess yourself and wonder if it could have worked, ya know? And yes 10 kg is right. That is one conversion that will never leave my head :)

    So how young is too young to teach kids to do their own laundry??

  4. Jen seems like a real gift to you!!



You there? I may or may not have just Googled, "Is blogger still a thing?"  I guess it's still going.....but possibly not th...