Been Awhile!

We're in the middle of another hospital stay for Jack. Tonight Nick is there and I am home with Emma, so I can take time to post the latest. After almost 8 weeks of the steroids, three of which were weaning and absolute hell on all of us, we were through with it. Then the most beautiful thing happened. Jack came back...what a smile! He even laughed a little. He started to lift his head and get some tummy-time exercise. We were making progress every day until the spasms came back. We'd had a great six weeks. We had known that they could come back. Maybe it returned because the steroids weren't at a high enough dose for long enough. Maybe it would always have come back. So we started all over again on the steroids about a week and a half ago. Besides two shots, it means going from 2 oral meds to 4, twice a day. He gains weight, but loses muscle control. My cranky 20# sack of potatoes has to be lugged from room to room. I'm so exhausted by the end of the day, a shower seems like too much effort. The saddest part is that I usually don't have free hands to play with Emma, and I'm just no fun anyway. But enough about me, Jack's blood pressure shot way up yesterday, and we headed off to the hospital. Admitted to PICU! That'll make you feel special! They've been trying to bring it down and it is very slowly coming down. Along with Jack's doctors, we have decided that we just can't risk doing the steroids again. Plus, if the spasms are going to come back and erase our progress every time, what's the point? So, we are weaning again, starting today.
We started looking into the ketogenic diet at Mom's suggestion. Johns-Hopkins hospital has had a lot of success with it, and for Jack it would be a matter of mixing formula to start, so it's a good time to see if it works for him. That would be a commitment of at least one year on an extremely strict diet. Ketogenic requires a ratio of fat:protein:carbs that is measured to the gram, and it's very time-consuming. If there were another drug option without the side effects, we would take it. So, Dr. Chacon, though supportive of the keto diet, suggested that we reconsider Sabril (vigabatrin). The concern with it is a 30% chance of permanent damage to peripheral vision. She says we can avoid that by giving it for three months at a time, instead of long-term. I don't remember if we were given that option before, but in light of our new harder choices, it seems silly to pick the difficult road before at least trying this. Jack will make progress, and be happy and healthy. There are no behavioral side effects. If stopped after three months, won't spasms come back and erase our progress? If the spasms are just intractable, then yes. But if we weren't giving enough ACTH or for long enough, then no. Jack's body didn't tolerate ACTH very well, so we stayed at the minimum dose to suppress the visible spasms, but that wasn't necessarily enough to normalize his brain patterns. Of course, Sabril may not actually work at all. It's best on cases of tuberous sclerosis, which isn't Jack's problem. We still don't know what caused the infantile spasms in Jack. The ketogenic diet may not work either. Unfortunately, steroids are the most effective treatment, in the broadest range of cases. Of course, statistics mean nothing, as all treatment options only have to work in one case: Jack!
Nick just called and said Jack's blood pressure is trending down, so I think he'll be let out tomorrow. He's out of PICU and "on the floor". (What an expression!) We have had genuinely compassionate and capable nurses through this, and that is a great help. I'm always proud when I think of the nurses our family has contributed. What would any of us do without you?
I'm going to fall asleep any minute now, so good-night. Tomorrow will be better!