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!
Hi Kimberly, Happy Mother’s Day. You are an incredible mom and have so much strength and courage in the road you’re walking now. What a blessing for Cannon to have you as a mom. I’ve been reading your blog and am amazed by how you’re handling these difficult challenges. I wish I could be there to give you hugs! I’ll be thinking of you as they taper Cannon off the anticonvulsants. One thing to keep in mind is that people are most familiar with what’s called “tonic clonic seizures” (or convulsions or grand mal seizures) but not all people with abnormal EEG activity or epilepsy have this type of seizure. There are many different forms of seizures. And in a way this is a very good thing. I completely understand what you’re saying about it being frightening thinking about Cannon having a seizure and hopefully he will not. But if he does, it doesn’t mean he’ll necessarily have a tonic clonic seizure particularly if they’re tapering him off slowly and if he hasn’t had one before. There are many different forms of seizures that do not involve convulsions, ask your doctor about it for more info -petit mal, simple partial seizures, complex partial seizures, etc (check out http://www.epilepsyfoundation.org). Things you can pay attention to are whether you see new behaviors during this the tapering off period, such as you notice he pauses in activity and has an absent minded look for a few seconds or he pauses and his speech becomes nonsensical or slurred, or you notice he’s swallowing and smacking his lips, or a side of his body goes weak. These behaviors may indicate seizure activity, but they are not convulsions. I know you already keep an incredible log of his meds, behaviors etc, so possible changes like this you can jot down too. Just from personal experience, please know not all seizures are convulsions, although I understand any seizure activity may be upsetting for you as a mom. I’ll be thinking of you during this time and sending prayers your way. Lots of love to you and your family! xoxo Becca
Oh Becca! Your support means so very much to me! I miss you girl! And thanks for the advice about this transition period for us. I am nervous but trying not to be. Cannon has always had glazed over moments that the therapists who work with him regularly have always told me could be seizures. In fact, when we went back to the hospital to have all the leads removed from his 24 hour EEG… he had an episode. They removed all of them and we were sitting waiting for the tech to confirm that all the info had downloaded and we could go home. He had such an intense staring spell that the tech came over and squatted down next to him. She asked me if he had done that while hooked up to the machine and I said I hadn’t seen it but I couldn’t be sure. She said that was unfortunate. And then the EEG showed abnormality but no seizure activity. I guess I just assumed that if he was already having these kinds of episodes with the meds…..that the without could be scary. And yes….any seizure activity is upsetting for a mom. Well, I guess we will see. Thanks again for the kindness and vote of confidence! Your friendship means so much to me! 🙂
Saying a prayer for you guys tonight!
Thank you so much! We really appreciate it and can always use them! Take good care! 🙂