At this point in time, pain management is the focus of treatment while they work on finding the cause and can do more targeted treatment. Kreed's pain management is compounded by the vast allergies he has and adverse reactions to many. We have trialed activist for two days and both days he raged in pain. Last night in particular, we let him go around on a scooter and take a walk downstairs. Within 30 minutes of our adventure, he was in horrific pain for the next hour and a half until he got a rescue medication. He finally fell asleep in the early hours of the morning exhausted from pain and activity.
Most of all, I told the doctors, we have to save his hands. He cannot lose feelings in his hands because that is how he talks. I will move heaven and earth at that point to make sure he doesn't lose his ability to use his hands to talk. Our life has become a nightmare of hospitals, doctors and pain. Our sweet boy suffers so much and it's not fair. I envisioned an active life with Kreed with many hours of hiking in Colorado and so many other activities.