Thursday, January 14, 2010

So long seizures

Ok, I'll start with what you really want to hear.....the answer to the question: How are Luke's seizures? Short answer: A LOT better!! Before I go any further, I have to tell you we are, ELATED and very, very grateful. Luke's neurologist told us today (and by the way, Dr. T is the smartest of the in pediatric neurology), "well, we don't really know how this diet even works...why or how it controls seizures." :) Smart people get uncomfortable when they can't explain things. It's cute.

Of the past 15 days, 12 have been seizure-free!!! "Normal" for Luke was about 2 clusters a day. (Infantile Spasms come in "clusters" seizure after another, 3-10 seconds apart). Each cluster consisted of 30-40 seizures. You do the math and that's 60 seizures a day, up to 2,000 seizures a month. YIKES. In the last 15 days, he's had 3...that's right THREE clusters total. That means we've seen about a 90% reduction in the last two weeks.

Luke has officially been on the Ketogenic Diet for a month now. We've made some adjustments, changed formulas, tweaked something here and another something there...... This will continue. After all, when it comes to seizures, 90% is fantastic, but 100% seizure control is the ultimate goal. Even one seizure every now and then can wreak havoc on a 1 yr. old's brain so we're working to get them gone....ALL gone. We are increasing both his daily caloric intake and his total fat intake.

That's it in a nutshell. For more information and continued prayer concerns, keep reading. :)

**The doctors didn't order an EEG yesterday. Since Luke is still having some seizures, the thought is that probably things won't look much differently in his brain right now. Once we have a long period of time without any seizures, we can call St. Louis Children's and arrange for an EEG to be done. THAT TEST WILL TELL THE REAL RESULTS. The reality of Infantile Spasms and really seizures in general is that sometimes you see them and well, sometimes you don't. And by not seeing them, I mean simply they are happening in the brain without any demonstrative display on the outside. So, while we aren't seeing the big clusters of startle jerks, it doesn't mean Luke isn't still seizing. (I know, bummer, right?) So, we wait......and hopefully we can get an EEG within the next 2 or 3 months and know for sure what is going on in his brain.

**The doctor and dietician were very celebratory with us yesterday. Any improvement is a reason to celebrate. That said, they wanted to make sure we keep our feet on the ground. There are cases when the Ketogenic Diet works wonders and just stops working. Like I said before, there's a lot of tweaking that can be done and we can attempt to get it working again, but it's not always possible. Some children will end up having to try anti-convulsant drugs again.

**So, if we get these seizures gone once and for all, Luke will start developing normally right? Eh, I wish. Dr. Neuro explained to us yesterday that we really don't know what is causing Luke's developmental delay. Is is the seizures or is it the brain injury? We can't forget that at birth Luke suffered a massive brain bleed, on both sides of his brain. Nothing short of a supernatural miracle can heal the brain from that kind of injury. Again, we have to wait and see (there's so much waiting in life, isn't there?). Our deepest desire is that we'll begin to see Luke start developing more and more.

**Luke has lost a significant amount of weight. This is somewhat normal for Keto kids, however he has lost even more than normal. So, we've increased his daily caloric intake to 1,050 cal per day. His sweet baby rolls are gone. When it comes to seizures, you find yourself living to the tune of "What is the lesser of two evils here?" And, well, seizures are almost always, by far, the greater evil.

**Luke underwent a series of genetic testing back in October, in an effort to find a cause for the epilepsy. The results have all come back normal (which we expected since his identical twin shows no signs of this disease). So, we're back to what we suspected all along....the epilepsy is a result of the brain bleed at birth and other abnormalities in his brain as a result of that injury.

**Luke will soon start more (LOTS more) therapy. It's time now to bump up our efforts and get him moving, exercising, and working to gain strength, endurance and mobility.

*******WAYS TO PRAY*********
Here are seven specific ways you can pray:

1) Pray that we see continued success on the Ketogenic Diet and that 100% seizure freedom comes quickly!!

2)Pray for healing and complete restoration in Luke's injured brain.

3)Pray Luke gains weight.

4) Soon we will start adding solid foods to Luke's menu (right now he's just on the formula version on the diet). Pray Luke eats well and learns to chew/swallow. (he likes to spit it all out and gag instead)

5) A recent MRI showed Luke still has A LOT of fluid on his brain (I'll blog more about his later). Keep praying this fluid drains. The doctor doesn't feel a shunt is needed at this time, but it's still definitely a possibility if the fluid level increases.

6) Pray for Luke's vision. We still don't think Luke can see a whole lot of anything. His eyes are perfectly healthy....the connection between his eyes and his brain is not. This can sometimes improve with age. Pray it improves!

7) Pray for Luke as he starts more therapy. It's a lot of work for a little guy and he tires easily. Pray we get in touch with GREAT therapists (I'll be calling next week to set all of this up!) and that Luke begins to soar developmentally!!


  1. Awesome news, Kristi!!! Praise God!!!!!!!

    I loved your line about how smart people getting uncomfortable when they can't figure things out...

  2. We love you we love you we love you!!! Thanks for the update, get some rest, and we will be praying these specific prayer requests. Oh, and, we love you.

  3. Thanks for taking the time to write all the details and updates. This is GREAT news for the month that he has been on the new diet! Praying for continued peace for you guys, strength and weight gain for Luke, along with the eye, therapy, etc. requests you listed. Praying you and Andrew have the energy you need for both boys, and the encouragement you need for all that's going on!! Much love and many blessings!!

  4. Kristi,

    We think of all that God has done up to this point and pray He will continue to work His miracles in Luke's life and brain.

  5. YAY! So much good to report!! I am hopefuly with tweaking you can get rid of the last few seizures. And that an EEG will be hypps free. That is the ultimate goal. Yes the seizures are bad, but the hypps is way worse!

    Re: 6- Luke probably has CVI (cortical vision impairment) as a result of the seizures. Ask about vision therapy. A lot of places don't offer it, but it has been shown to help. And getting SF will help also!

    Can't wait for the next (better) update!!

  6. Thanks everyone!! We are very excited!

    Jen---YES!! The normal EEG will really be the day to celebrate! I truly hope we get there sooner and not later. Luke does have CVI. I don't always put all the terms cause it's Greek to a lot of people. (It sure was to me before we started this whole journey!) Vision therapy is hard to come by here (Springfield,MO) I'm sure we could do some in St. Louis or KC. Missouri School of the Blind will start sending someone twice a month. It's not really therapy, but they will teach us how to help Luke engage and will do a Functional Visual Assessment. Working on getting a VEP (?) also, but Dr. Neuro doesn't really think we'll gain much info from that. We'll see.....

  7. We are praying daily as a family for Luke and Caleb and you and Andrew. We know that you are by far not out of the woods and yet we are praying for a moment or two of peace here and there. God is in control. He really is and He loves Luke even more than you do. With all of our love, the Lockwoods

  8. So glad that so many are praying!

    He is our Hope!!

    Love you ... all 4 of you!!


  9. This is Awesome news!!! We The Jonssons, Mats, Sarah and Linus" In Sweden, Pastor Terry's friends, are praying everyday for all of 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...