After Button Boy’s last endoscope, the results were not as promising as we had hoped. The accumulation of white cells that were creating the discomfort in his throat had diminished, but not to the point that Dr. Saeed was ready to stop all medication. Button Boy began taking Prednisone about 2 1/2 weeks before Christmas. We began noticing that his cheeks were beginning to look like a chipmunk…cheeks filled with nuts! We were not experiencing what we had really hoped to see, which was a dramatic increase in appetite. He was still not eating very well. Then, all of a sudden, we began to lose our sweet little boy, and see that he was being taken over by a child who was having some pretty severe mood swings….he wasn’t dramatically violence, but when he was getting angry he was balling up his fists which is something we have never seen him do. He wasn’t becoming giddy or depressed, but what we did see was the inability to recover from sadness.
For example, Button Boy LOVES his school. He attends a Montessori method school in town (his sister also attended there) and loves his teachers and his classmates. The week before school was out we began to see Button Boy become clingy when I dropped him off in his classroom. His teacher commented to me that it took him over an hour to settle down and participate in line-time and lesson time….this is very unlike him…he has been very active in his line-time, singing and participating in lesson introductions…he has also been very active in lesson time with puzzles and math lessons, and is becoming more interested in reading and writing. The fact that he was not recovering from being left in the classroom was very disturbing for me. We also began noticing that he was becoming more clingy at church and at home.
We became concerned enough to call Dr. Saeed’soffice and speak with them about the trials we were experiencing and our concern that it could be the side effects from the Prednisone. We have been blessed beyond our understanding withthe medical professionals that have been taking care of Button Boy. As soon as I spoke with the nurse, she contacted Dr. Saeed and they made the decision to cut his dosage in half instead of taking him completely off. Taking him completely off the steroid would do several things….it would cause a need for the next endoscope to be moved to earlier to see if the minor amount did anything to effect the accumulation of white cells….it would mean the need to wean him off of the steroid because his little body has already absorbed enough to cause him to have withdrawal symptoms when he has missed only one dose…it would also increase the chance of the necessity of trying the six-step elimination diet that I am scared to death of!, I only have so much organization in my life, and I am unsure of the discipline I have to make it through so many months of eliminating Soy, Wheat, Egg, Dairy, Nuts, and Gluten, I mean, it hurts just to think about it!…I would do it, but oh! it would hurt!
So, we have now been almost 2 1/2 weeks on the lower dosage of Prednisone, and Button Boy went back to school. His ability to control his emotions is still a struggle…he seems to have a difficult time recovering from disciplining and getting upset at something. He is still having a little trouble with “clinginess” at church — school is another story, we’ll see how it continues to go. His appetite *has* finally increased. When we stopped at the Varsity on the way to and back home from NC, he ate 1 1/2 cheeseburgers…EACH TIME! That is HUGE for this young’un! He is also wanting to “nibble” all day long, which we expected, but it has finally kicked in!
We are looking forward to seeing Button Boy’s continued progress….until March 4th….and then we’ll be hopeful to see the Prednisone GO AWAY!!!!