Before I had Jackson I was one of those people who believed that medication was a good thing. If I was sick I would take some kind of medicine to feel better or antibiotics to heal whatever ailment I had. I was never one of those people who practiced or really fell for the holistic medicine approach. Now that I have a little boy who, unfortunately, is going to have a life long relationship with medication, I find my attitude toward medication changing. When Jackson was first diagnosed we went to see the neurologist and he prescribed medication for the seizures. I just figured the medication would stop the seizures and Jackson would be ok. When that didn’t happen it was kind of shocking to me. It was the first time I really had to face a situation where there was a chance medication wasn’t going to work. I soon realized that something that has always been so simple for me wasn’t going to necessarily work for Jackson. Now that Jackson is on his 3rd seizure medication, I find myself having mixed feelings about medicine. Lately I’ve been looking into alternatives to medication to help with the seizures. At this point I’m willing to try anything reasonable to help Jackson. If we can find a concoction of medicine that would stop these stupid seizures I am all for it. However, what we’ve seen in the past is an alteration in Jackson’s behavior and personality with certain medications. The medicine he is on now, Topomax, hasn’t had an effect on his personality (that we’ve noticed), and it is also helping a little with the seizures. But last week when we were in Seattle, the doctor told us we need to get more aggressive in treating Jackson’s seizures. Part of the desperation is that the seizures are causing more damage to Jackson’s brain and his ability to develop. While I agree with the doctor, I’m fearful of what all these medications will do to Jackson. I hate to think of the “cocktails” that are in his future. I also wonder what kind of long term effects these medications could have on Jackson’s body. We meet with the neurologist this week and will hopefully come up with a good plan to battle the seizures. I just hope we won’t have to make a decision between medicine that could potentially stop the seizures or medication that may not stop the seizures but would give Jackson the ability to function regularly in day to day life.
In all of this, I’m finding my role as a mother changing. No longer do I feel that I should just listen and trust the doctors. That old sayings “mother knows best” and “mother’s intuition” really kick in when you have to watch your child have a seizure or vomit all day. Your role as mother turns into one of an advocate. I think all mothers are advocates for their children, but when your child has health issues you can find yourself spending more time as an advocate than as a mom. In the past month I have decided to stop giving Jackson medications that the doctors prescribed because (1) I didn’t think it was helping and (2) it was causing adverse affects. I did this without consulting the doctors. Maybe that isn’t the best way to go about it, but I live with my son and see what he is like every day and because of that I have a better perspective than any doctor out there.
Jackson’s other main issue aside from the seizures is his spitting/throwing up. Some days he hardly does it, other days it is a constant thing and he will go through 3-4 shirts, 5 bibs and 7 towels a day. He has had a few tests done at the hospital – 2 gastric emptying, upper GI, lung aspiration and a scope of the GI tract. Both of his gastric emptying tests showed that he is having prolonged digestion but everything looked normal during the scope so we don’t know why he is throwing up so much. After the first gastric emptying and upper GI tests the GI doctor put him on the medicine called Reglan. This was a medicine the doctor had tried to put him on once before but couldn’t because it interacted with his seizure medication at the time. But then we switched seizure medication so we put him on the Reglan. Jackson went through two bottles of the Reglan and we were on our 3rd bottle when I finally admitted to myself that this medicine just wasn’t working, and while he was on it, Jackson’s seizures had gotten worse. All of the sudden it hit me that just because the doctor told us to give the medicine to him didn’t mean we had to. I was his mother and I should be protecting him, not following doctor’s orders. So one day I just stopped giving it to him. Since then I really feel that his seizures have gotten better and his spitting up hasn’t really changed. A couple of weeks ago we did the second gastric emptying and this time the doctor prescribed Erythromycin. It seemed like it was working for a couple of days then Jackson starting puking again. I still gave it to him for a few days but this weekend Jackson got a diaper rash, which the pharmacist told me might be a side effect. Jackson’s never had a diaper rash before so I was surprised. Needless to say I stopped giving him the medicine right away. The diaper rash is way more uncomfortable and painful for him then the throwing up. I’m done giving him medicines for the throwing up. I am tired of putting him through additional medical issues. Jackson isn’t able to care for himself and he needs someone to stand up for him and say “enough is enough”. That’s my job as Jackson’s mom and advocate.