Wow! What a week it’s been! I told you guys in my last post that I wasn’t sure if I could hold off getting Cannon checked out until the 2 motility tests got done. Well, I couldn’t. Only one test is scheduled and on Wednesday, we had reached our breaking point. Cannon was so incredibly emotional and erratic. He cried and screamed most of the time and had no vocal control. He was crashing into everything possible; doors, walls, furniture, appliances. He was stimming (vocal self-stimulation) and scripting nonstop and at a feverish pace. He was starting to not eat or drink very much, either. Even his Preschool Aide and Swim Teacher agreed he was acting similarly. So, I packed our bags just in case and hit the road for the E.R. Cannon has never re-impacted this quickly. In a month…..yes. But, not 2 weeks. We have x-rayed him a week afterwards a couple times before… …because his behavior was consistent with this problem and we wanted to head it off. It was always…..well…… really bad gas. Sorry guys, I know this may be TMI. But because of Cannon’s severe sensory issues, having a lot of gas is almost as bad as an impaction. Very excruciating and he can’t express it vocally or tell us how to help him! Well, the short version is that after an x-ray, it was confirmed………no impaction but a horrific amount of gas. My poor baby! So, on one hand…..it was great! No hospital stay and cleanout! But, on the other hand….there was nothing they can do for him. We can try Mylicon drops (don’t work for him) and Ibuprofen (same result) but that’s it. And the other thing is…..it makes us gun shy to bring him in the next time.
On the way to the hospital, I was grasping at straws. I was trying to think of anything possible to avoid the partial colon removal surgery that has been proposed. I called our Allergist. She has done extensive testing before but I wanted to hear her say that she had done all she can do one more time. She confirmed this. I also called our Neurologist. Our Pharmacist had informed me that there is a 5% chance that Cannon’s seizure medication can cause constipation. He first began this medication about 2 months after his tummy trouble began a year and a half ago so it is not the cause. But I wondered if it could be making it worse. She thinks that it is worth a try to take him completely off of it and see if that helps. She has never been sold on the idea that Cannon has seizures, even though his EEG’s were abnormal. As I mentioned in “Our Story,” there are 2 causes for an abnormal EEG. One is seizure activity and the other is just that there are funky charges in the brain caused by the Autism. So, I guess now we will find out if he does or he doesn’t. I have always believed that he must have had a seizure at one point, probably in his sleep, that caused his dramatic and almost instantaneous loss of fine motor skills. That is just my opinion but I believe it in my heart. So, this idea scares me very very much but I am willing to try anything to avoid this undoable surgery! The plan is that we will spend the next 5 weeks slowly tapering him off his seizure meds and see if the constipation gets better. We will also do the 2 motility studies in the meantime. Our pediatrician thinks we should set a goal of making a decision about surgery by mid July. She also prescribed a SMALL amount of Prozac to take the edge off of his anxiety and maybe help him sleep. That was a very pleasant side effect of the seizure medication. Cannon used to wake up screaming 3-6 times a night for at least 20 minutes at a time prior to starting it and this stopped the very week we began it.
So, friends, we could use your prayers! Please pray that this will work so that Cannon will not require this major abdominal surgery! And pray that he does not really have seizures. I am so frightened of what the sight of my baby seizing would be like. I just don’t ever want to know! I am not the best under pressure and not sure how I would react. Thank ya’ll so much!
I was watching this movie last night called “Faith Like Potatoes.” It was a true story about a farmer in South Africa who chased material wealth until he realized the hole he was trying to fill could only be filled by God. He then became a preacher as well….sharing with anyone who would listen the freeing power of Christ. God did amazing things in and through this man’s life. And one year in the midst of a drought, he did a crazy thing. He decided to go on faith and plant potatoes. These require a lot of water to grow and you have no idea until harvest time whether they have grown at all. Because they grow underground and cannot be disturbed. Well, like any good movie, it had a happy ending. The potatoes not only grew but they were huge. What a witness to the entire community who came out to see what would happen! He later talked to the people about how you have to have faith like potatoes. Faith in a God that you can’t see but you believe and trust with all your heart….is there. He spoke of faith so strong that you can feel it and hold onto it. I was inspired to strive even harder in my own life to have unshakeable faith and also reminded of Hebrews 11:1 …. “Now faith is being sure of what we hope for and certain of what we do not see.” God bless ya’ll!