Billy Ray came through the colonoscopy fine yesterday. Dr. Bochner said that everything looked normal. Biopsies were done so we will have to wait from the results but he didn't expect them to show anything.
That is, of course, good news. At the same time the frustration on not being able to explain his pain. Dr. Bochner seems to feel it has something to do with diet but none of the tests done to this point have identified anything as the culprit.
My mind is racing over the past year. The doctors said that pain for a few weeks after his appendice and exploratory surgery was normal. It has continued for over a year now. However, we have made significant changes in this diet, etc. because we have dealt with what appeared to be diabetes (but has now stabilized and may have been only because of problems with the pancreas) and the acute episode of pancreatitis.
While some swear by "diet" everything, my personal experience has been that I can't use those products because they make me ill. Of course, Billy Ray does not have my chemistry being adopted but I have been wondering if the change to products like that to deal with his blood sugar and pancreatitis issues could be having some impact on his abdominal pain.
I called Brice Stanley, his primary medical provider, this morning. I wanted to maybe test going back to his regular diet without some of the artificial sweetners. He thought that was worth a try until he sees Dr. Masterangelo (gastric surgeon) again on the 14th. So for at least a couple of weeks BR can enjoy some of his favorite foods and see how it goes.
In the back of our minds has been the Nissen Fundoplication surgery which Dr. Masterangelo has recommended doing if the acid reflex (GERD) didn't improve with medications. However, he wanted BR to be as stable physically as possible before doing it. I haven't not been anxious to do that because idea of wrapping his stomach around the base of his esophagus is scarey. However, we do seem to have come down to few options or answers to his pain. If returning him to a more normal diet (for him) doesn't improve the situation
by the appointment time we will likely look at doing the surgery.
It is my understanding that this procedure has been frequently done of complex children. If any of you have experience with it, I'd love to hear from you.
He got up about 6:15 a.m. and wanted to be rocked for a little while and is back to sleep. I assume he is tired from the events of the last two days including the "cleansing" and the need for sedation for his procedure. At nearly 9 a.m. he is still sleeping.
That's where Billy Ray is today. I will keep you posted.
Until next time,
Peggy Lou Morgan
Club Mom Special Needs Children Expert
Websites: www.parentingyourcomplexchild.com and www.lighthouseparents.com
Lighthouse Parents Blog