WE ARE WINNING !!!!! This is huge!

Cully's original EEG on November 6th turned into a near week long stay at Children's Hospital when his health took a turn for the worse.  After his discharge Cully had another bout of the muscle spasms in his arm which was linked to the low electrolyte levels so he returned to the hospital for a day stay and an IV.

NOW THE GOOD NEWS !!

We returned again for another EEG yesterday as a follow up after the increase in ACTH. the results were GREAT !  Not a single sign of any seizure activity in his brain. Nor had we seen a visible seizure all week. The ACTH has done it... And now we start to wein him off the ACTH which will take 5 weeks.  We were informed that there are some children that may need a second round of the ACTH and we will see how this goes over the next couple months.  BUT IT WORKED !!

We knew something was up. Cully has been doing so good. The last few days he has been putting words together to make a full sentence. His speech is a little clearer too. His attitude has improved too. Without all that erratic activity in his brain he has been able to focus and stay on task.


ANOTHER BUMP THOUGH....

Today Cully had to return to the hospital once again due to the muscle spasms. They were much worse than we had ever seen. This time not in his arm but in his legs. Starting in the left and working to the right. He came yelling OWE..STOP IT...HELP..... The legs were twitching and cramping and it hurt him a lot. I think it could be described as the feeling of a charley horse that goes on for a while then to stop for a moment and return again. He was crying and begging for help but there was nothing we could do but panic, which we did. He would walk for a moment and then both legs would give out and he would fall to the floor and grab his legs screaming. This happened a few times while we ran around getting things for the  trip to the hospital. To see it was really frightening as you could not miss the legs shaking so fast and when I would hold his legs you could feel the muscles inside pull and release like cables under his skin. Imagine being a 2 year old trying to understand this.

Blood drawn and tests came back and showed that Cully's levels are all normal or better.  So now the issue is to determine what is causing his muscles to do this and how can we get him immediate relief? Is this due to the ACTH treatment or something else?

Cully has gained 11 pounds from the ACTH in less than two weeks. I think half of it is in his cheeks...