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....