I know that many of you have been waiting patiently for more formal updates to our trip to Minneapolis last week, and so I apologize. I wanted to get all the information together that I could, and process it all.
First and foremost, the best way I can describe our trip is that the only way we could have gotten better news is if the doctors somehow discovered a cure at some point during our flight over and were able to give him an injection and everything would be okay. Obviously that didn’t happen, but pretty much any other hope or wish we had, we got.
The purpose of the trip was for him to undergo a series of tests, including an MRI, a spinal tap, some blood and urine drawn, and a neuro-psych evaluation. These tests would set a baseline to work from, to see if the treatment he will be getting is working. Then, starting this past Monday, Armand would begin the treatment with a staggered introduction of four medications, beginning with Ibuprofen. Then, over the course of a few weeks, we will begin introducing three other medications, including the miglustat which is the keystone for this treatment — it will (theoretically) “turn of the faucet” of lipids his body produces, helping him cope with breaking them down. For more on why that should be effective, please see the FAQ on his condition here. The other three medications are used mainly to attack the disorder from an inflammation standpoint.
The tests showed that he probably has a milder version of GM1 than we thought — many of his levels were at or near normal. His MRI showed that his hypomyelination is not getting worse, or at least hasn’t over the past 6 months. His neuro-psych evaluation showed that his skills, while not progressing, haven’t regressed either. He’s in a holding pattern — but this is good news in that he’s not losing skills either, and if the medication works like we hope it will, he may be able to catch back up to where he needs to be.
The surgical procedures happened on Tuesday, and he pulled through like a champ, woke up in a bit of a daze, but not completely out of sorts, and was back to his old self before we left. He had a rough time over the next few days, probably still feeling the effects, but nothing too outlandish.
We head back to Minneapolis in October, for a repeat of tests, to see how he is progressing.
We left Minneapolis much more optimistic about his future than when we left. He’s getting help, and that “little more time”we’ve been looking for: we might just get it. Armand is not by any means out of the woods yet, but we can see some sunlight through the canopy, and I think a few of the trees are blooming.