Uncharted Waters

Recently, we have noticed that Oliver has regressed in his development. Being with cousins (close to Ollie's age) and family this week has reminded us of things Oliver used to do. Dr. Theile warned this might happen (b/c the Infantile Spasms) and if it did we should intervene ASAP. Infantile Spasms are so bad mainly because they can severely affect development, hence intervention needs to be aggressive and timely. Of course we feel really emotional about this...what parent wants to see their child going backwards in their development at this crucial time? This is one of those big bad things about TSC we had realized might happen but, thought surely Oliver had escaped. (Sigh) Thankfully, he did get through 23 months of development on track and we thank God for that!

We've been in touch with Boston tonight and our dr. is out until Monday on vacation. There is a chance she will call us but, most likely we'll have to wait to talk to her. We will hear from the doctor covering for our doctor tomorrow afternoon sometime. So here are our options moving forward- none are great- but I think this is the order we'll try (based on our conversation with the nurse tonight):

1- Clobazam, an anti-seizure med from Canada. This drug will be approved in the US this calendar year but, for now you have to get it from there. In Boston they have a supply that they can overnight to us or otherwise you wait 4 days to get it from Vancouver. We think this will be our next step because its side effects aren't as extreme as option #3 (see below) and it has been really effective for folks with TSC.

2- Go on the Low Glycemic Index Diet (not the trendy one you've heard about) but a medical one, pioneered at Mass General, for TSC. The food becomes the medicine. Oliver wouldn't need to be hospitalized but, we would need to travel to get all his blood work/prep work done and for us to be properly trained. It would be a huge lifestyle adjustment for all of us but, we are willing to do it at this point. I have no idea about the ramifications for play dates, preschool, restaurants, etc. We'll cross that bridge when we get there but, I think it will be hard :(

3. Start taking Sabril, a very effective IS drug that unfortunately causes permanent vision damage. The extent of the damage varies by patient and it is irreversible. The vision loss can continue even after the drug is stopped. It is a black box drug, meaning you have to go to a special pharmacy to get it and sign waivers to take it. Oliver's eyes would have to be checked regularly and we would pray he wouldn't have permanently blurred or tunnel vision. It is possible it could create a real disability that he currently doesn't have. Obviously, ISs are bad enough, in some children, that the risk is worth the benefit. I have read many parents on the TS Alliance message boards say Sabril changed their lives and got their kids back on track developmentally. This is our last choice right now but, it is a real possibility.

These are hard decisions. They will affect the rest of his life in ways we don't fully understand. If he has vision impairment when he is older we want to say we tried everything first to avoid it. We'll explain that we couldn't sacrifice his cognitive development any longer. It is also possible he could be one of the rare folks who has no vision problems with the drug...

As you might have guessed, it has been an unsettling day for us as we sail into uncharted waters. It is weird to be living through some of our worst TSC fears. We feel a bit discouraged but, know that God is with us and He is in control. As a good friend pointed out, God can, and often does, allow people to rise above their limitations to be more than they would have been without them. Perhaps this will be part of Oliver's story. As the challenges intensify we ask for your prayers particularly for peace and contentment.

Psalm 112:7 "He will have no fear of bad news; his heart is steadfast, trusting in the Lord."