Treat the Symptoms.

It took me a while to decide if I was going to post an update after the neurologist or not. I hate posting something and not actually having anything new to say.

We went to the neurologist Wednesday. I was hoping after this appointment I would be able to say I liked him more than last time. I can't. I honestly don't know what it is about him. I'm sure he's a good doctor. And I'm sure he knows what he's talking about but there's just something about him that bugs me. Maybe I've been spoiled by Coop's pediatrician and physical therapist and just expect every doctor to treat us how they do. But he walked into the room and immediately started rambling stuff off. He didn't ask how we'd been or aything like that. Just jumped right in.

The first question he asks? "Is he crawling now?" Nope. He's not. I told him he really doesn't do anything more than what he did in December. In fact, he's doing less.. I explained to him that Cooper doesn't roll all over like he used to. And he no longer lifts his head when he's on his belly. I made sure to note that I don't know if this is because he's actually regressing or if it's because his body is getting bigger but his muscles aren't.

I also told him about our visit with the neurosurgeon and how we were referred to U of M. He agreed and said that's definitely our next step. He also agreed that we should get an MRI of the rest of his spine just to be sure there's nothing else going on. Maybe that should've happened the first time?? He started rattling off notes and different tests he wants done to his assistant. I started to ask him about a few things and he started talking to the assistant while I was talking. I just stopped what I was saying and let him finish his thoughts to her first. That's when I decided this guy annoys the crap out of me and I don't like him.

I mentioned the arachnoid cyst and he corrected me to tell me that it's a filar cyst. Well, yeah, there's one of those too. I explained that there's also an arachnoid cyst, to which he replied "well an arachnoid cyst is just space." Ummmm, technically isn't everything just space? I think he could tell how annoyed I was because he changed his tone and asked what the neurosurgeon thought about it.

One thing I've been very suspicious of for a while that nobody has mentioned to me is Spinal Muscular Atrophy (SMA). I found this explanation of it on a website called Together in SMA In spinal muscular atrophy, there is a loss of important cells in the spinal cord called motor neurons, which are essential for muscle strength and movement. These motor neurons regulate muscle activity by sending signals from the central nervous system (CNS), which is the part of the body’s nervous system that includes the brain and spinal cord.

The loss of functioning motor neurons leads to progressive muscle weakness and atrophy (the gradual decrease in the mass and strength of muscles), as muscles stop receiving signals from the CNS.Unlike many other rare neuromuscular diseases, there is a clear understanding of the specific genetic cause of spinal muscular atrophy.

I've read a lot about this recently and many of the symptoms sound like Coop. There is no cure for SMA but research has come a long way in the last few years and there are a few treatments that can help. From what I've read though, the sooner the child begins treatment, the better their chances are at living a fairly normal life. 2 years old seems to be the magic number.

Because of this I asked his neurologist what we needed to do to test for SMA. He looked at me like I was crazy and said that children with SMA are much sicker and he would be extremely surprised if that's what is happening with Cooper. That made me feel better but not as good as ruling it out would. I told him I needed to be sure this wasn't something he had and he assured me that once we get in to see neuromuscular they would test for that. So again, still waiting on that dang neuromuscular call.

I was surprised that he wasn't really doing much to assess Cooper other than talk with me. He felt his feet and wiggled them a bit but that was it. At one point he checked for reflexes again and he still didn't find any. Towards the end of our appointment he walked over and moved Coop's arm. Then said, "hmm that's pretty low tone too." Yeah bud. It is. That's what I've been trying to tell you! So he asked if we've had an EEG. Next thing I know we're walking down the hall to a small little room where wires start being hooked up to my baby's little head. Luckily Grandma Shelly was with us so I was able to stay calm and not freak out too much. And Sissy was with us too so she kept Coopy entertained while the tech put close to 20 wires all over his head.

I honestly don't know why we did the EEG. Obviously I'm happy to be testing for anything and everything at this point so I was definitely not going to protest it. But I never got a clear explanation of why he thought that was something we should do. I've already got a call back with the results and everything came back normal so I guess that's another thing to check off the list.

Throughout this journey I've talked a lot about "when we figure out what's going on", "when we get it fixed", "how can we make him better". I've known that there's a possibility that he will always be undiagnosed. And I'm aware that we may never be able to "fix" his issues. But the neurologist said something on Wednesday that I just can't stop thinking about. He said, "99.9% of the time, cases like this don't have a cure. We just treat the symptoms." Talk about a punch in the gut.