The happiest day in my life. I didn't know then that it would lead to some of the saddest days in my life.
At 3:30PM yesterday, Bertrand began a course of ACTH gel injections. He has received three injections so far. He has had lot of seizures today--more than all of last week's seizures combined. It is a bit discouraging. We know that because he is still producing large ketones and his glucose still reads as low (consistent with a 4:1 ketogenic diet), perhaps we are not seeing the full effect of the 90 units of daily ACTHar gel. I can only hope that over the next few weeks (preferably days) we'll see the improvements that ACTH is famous for and not so much of the side effects that it is infamous for. Fingers crossed.
ACTH is tough. It necessitates so many big adjustments with the shots, the change in temperament, and the monitoring for side effects. But, just like all of the other crazy stuff we have to do, you'll get used to it faster than you think and it will become the new normal. Any kind of big change can bring out seizures, as you know. It doesn't necessarily mean that it is *causing* them - the transition could just be lowering his threshold temporarily. If it helps to know, Collin didn't have any of the major side effects. He was definitely agitated and got seriously puffy, but that was the extent of it. Hang in there.
ReplyDeleteI don't know much about ACTH, but I do know you. Breathe. Today is over. Tomorrow is a new day, hopefully one day closer to answers and less seizures. {{hugs}}
ReplyDeleteYou hang in there, Cristina. I'm so sorry it's been a heartbreaking few days. Cry all you need to, but know that better days are ahead. We've been praying for you.
ReplyDeleteLove,
Ashley
I've been thinking about you a lot. You've got so much going on right now. I've got all my fingers and toes crossed for all of you.
ReplyDelete