Friday, November 20, 2009

Decisions, decisions

We just talked to our docs in St. Louis this evening. They have scheduled Luke to be admitted to St. Louis Children's on Wednesday, Nov. 25th. Luke started a new med, Vigabatrin, about three weeks ago to control his infantile spasms. The seizures haven't stopped even though we have increased the dosage (in fact on most days, the seizures are worse than before), so it's time to look at a different option.
As we've stated in other posts, Luke's prognosis is very, very poor at this time. The prognosis can be "better" with QUICK and COMPLETE control of the seizures (that is 100% seizure free, not just a reduction in seizures). So, that is the goal right now.....getting the seizures stopped...and getting them stopped as soon as possible.

Luke's doctors are recommending that Luke be admitted on Wednesday and begin ACTH therapy.....an aggressive steroid treatment used to treat infantile spasms. The treatment will require a 3-4 day hospital stay. Afterwards, Luke would return home and we would be giving him steroid shots at home for another 4-6 weeks. Luke will have a suppressed immune system and will have to stay at home for the course of the treatment. He will be closely monitored by a home health nurse as the steroids can cause high blood pressure and other serious medical problems.

Over the past couple of weeks, Andrew and I have become increasingly interested in something called the ketogenic diet. It is a high fat diet sometimes effective in treating infantile spasms and other forms of epilepsy. The diet can be quite difficult to follow and hard to implement in toddlers/small children. But, because Luke is still mostly on formula, he would be able to switch to ketogenic baby formula and remain on this diet for a couple of months to see if it helps at all. Luke would be admitted for one week to begin the diet and achieve "ketosis" and then sent home with the formula. We can't start this diet until he is weaned off of one of his meds, Topamax. It will take two weeks to wean him off of this med.

Our doctors have been REALLY great. It's wonderful to hear them say over the phone, "We've met Luke twice. You're his parents, so we trust you completely. We want this to be a team approach". We really feel we will get their support either way. If left up to them, they would do the steroids first and then if that doesn't work, try the ketogenic diet. Their reasoning for this is simply that the steroids will work faster and since we're trying to preserve his brain, we want to get him seizure free as soon as possible. The steroids are just very intense and we (well I say "we"...mostly it's just me.. Kristi) are very scared of this treatment. Personally, I'm just not sure it's the answer for Luke. If the steroids do work, they'll work by Christmas, whereas the diet can take 2-5 months to work.

Of course, most of all, we want what is best for Luke. All we're looking at are stats....and the medical community's best guess of what will work. Every child is different, and so it's hard to know what to do next. Thank you for your constant prayers. We have a such a huge support system...it's amazing!! Please pray God will give us wisdom. We asked the doctors to give us until Monday and then we would call with our decision....




6 comments:

  1. Hi guys. We are praying for you and for little Luke. We pray that you will know God's peace, and comfort and sense the leading of the Holy Spirit. We love you and miss you!

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  2. No doubt about it, this is a horrible disease. Not only does it affect the children, but it affects the whole family. It really stinks they want to admit him the day before Thanskgiving. Why would they want to start something so critical, when families (and hospital staff) want to be elsewhere?

    Regardless, ACTH can work, despite the horrible side effects(and cost). I hope it will work for Luke. I can't offer much advice, we never used it, but I will be here to listen, every step of the way. Another family, that has been through it twice has a blog. Danielle is awesome. Check her family out at trevorshope.blogspot.com. Her son ended up needing brain surgery, but she knows a lot about ACTH.

    Good luck, I'll be thinking of you.

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  3. Our daughter is on the keto diet and has been for over 2 years. Has not eliminated the seizures but has helped with development, GI issues, and growth. Keto diet is strict but in the formula stage it's really not hard, make up the formula in the morning and you are good. If you have questions we are just north in Iowa kevincharris@gmail.com.

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  4. Hi Andrew & Kristi,

    Kristi, I am friends with your father. I pastor StarBridge Christian Center in Wildwood, Missouri. I am having our prayer team pray for Luke's protection and healing. I know you have a lot of friends in the St. Louis area, but if you ever need a place to stay, or a favor of any sort let me know. My wife Nancy can fix you some great Italian food. You can reach me at drbailey@starbridgechristiancenter.org. God bless you............David Bailey

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  5. praying intently and intentionally. let me know what I can do!

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  6. Kristi and Andrew,
    Letting you know ALL of you have been, and continue to be, in our thoughts and prayers - especially little Luke. He is on our prayer list at church, also.
    Love you guys,
    Lisa and Nick, Giovanni & Isabella

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