First Dose- Sabril

"I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living." Psalm 27:13

Welcome to another edition of "The Roller Coaster Known as TSC"...

This morning we gave Oliver his first dose of Sabril. It felt weird to watch him take the medicine and wonder if we were starting a process of causing him to be blind. It feels tremendously heavy to make this important of a decision for another person. It is painful to realize we don't know exactly what we have set in motion. Regardless of what happens with his vision, we are happy to say we waited as long as the doctors would let us- we tried everything else available. We'll be starting the Low Glycemic Index Treatment when we go to Boston and hopefully, Lord willing, it will work and Oliver can (slowly) go back off of Sabril. If he is on Sabril for less than 3 months it greatly reduces his risk, which is really great; on the other hand we know the moment it goes into his body it could cause damage. Many of you have asked if the vision damage is reversible and it is not. The damage can also continue once you stop the medication, hence our apprehension to start it. We started it because we don't want Oliver to have further cognitive/developmental delays. We decided it would be better to (possibly) have serious vision problems than to be mentally challenged.

Then tonight, the roller coaster took off again. We were emotionally worn down from this morning when we got a call from the SHARE program. SHARE controls the distribution of Sabril in the US and wanted to discuss co-pays, rx benefits, etc. We know the first prescription/month supply is complimentary; that is really nice. It didn't seem very drug-company-esque but, we are grateful. Tonight we were told that, if we don't qualify for a charity plan from Macessan (sp?), we could owe as much as $500-$1000 a month (OUT OF POCKET) for this drug! WOW! I was stunned. I put the lady on speaker phone and said "could you please repeat that?" "My husband will need to hear you explain that!" That is one of those things you need to hear a second time anyway, just to make sure you comprehend it!

They've asked us to send in our tax records and then they'll get back to us about the program. If we qualify we could receive up to 10 months worth of help (a $13,000 value). That would be awesome! After the 10 months, there is another program you can apply with but, their income limits are even lower. We are seriously hoping he will only be on it for a few weeks and then the diet will start working.

We do have health insurance but, there is a cap on our prescription benefits. There is most likely a way to work it all out. Our insurance agent is a best bud of Andrew and has already got some great ideas of what we could do- thank you God for him! I feel confident it will all work out, either with the SHARE program or an insurance change of some sort. The bottom line is this is another, rather harsh, reminder of the cost of taking care of a kid with rare genetic disorder. The crazy thing is we haven't even dealt with many of the other TSC complications that will likely affect Oliver (skin, kidney, eye). I'm glad to know I have a virtual community of other TSC parents that are dealing with similar issues and they have figured out how to make it work! I've already started a discussion to get their advice. Thank the Lord for the internet, 20 years ago, if you had a rare genetic disorder it would have been very lonely!

In all this we trust God will provide. We don't know how it will happen but, we are trying to enjoy the surprise of figuring it all out. I mean, if we really trust, we should be able to enjoy watching it unfold. Don't get me wrong; I don't think it is going to be easy. I am certain we'll have to continue to make hard choices but, we really want to be able to see this with eternal eyes.

Psalm 84:6-7

As they pass through the Valley of Baca,

they make it a place of springs;

the autumn rains cover it with pools.

They go from strength to strength,

till each appears before God in Zion.