Rachel just had a spell. We were in the middle of making plans for the day. I was going to take the kids to a park and be back so Dave could go pick up a play structure we found on kijiji....and then suddenly everything was put on hold. The kids got thrown in front of the TV again while we took care of Rachel...oh what is our life?
ok...change of plans...picnic in the back yard.. Dave is going to watch Rachel inside. She's sleeping now. I can hear Ethan asking (in tears) why we can't go to the park. Ethan has such a hard time already with any change in plans. And Dave is telling him that we can't go to the park because Rachel is having a hard time..oh this is hard...please pray for our family, for our kids. This is so hard for them to understand.
to answer your question Amanda - the spells don't have anything to do with medication. We give her fentanyl after her spell begins and she was having spells long before we gave her this drug. We do believe that it is helping her - she visible relaxes not long after we give it to her. (her body is still in distress but she doesn't seem conscious of it) And it works so much faster than the morphene did. One doctor told us that she was quite certain that Rachel would not survive these spells either, if it were not for the fentanyl. We think that the fentanyl even works to open up her arteries. I'm so sorry to hear about your Mom. I have never heard of that happening before.