This week has been intense. We have been visiting specialists almost every day in an effort to figure out what is going on with our sweet Matthew. We finally have some answers...but I don't like them. I'm trying to decide whether what I feel is more an issue of me not wanting to accept the truth or my Mamma Gut (note the capitalization--I give it the respect it deserves) screaming at me.
Matthew has been having a rough time as I explained in my last post. We have been completely lost and unsure as to how to proceed with him--what else we could possibly be doing to help him progress, decrease his dysfunctional behaviors, and help our family life to improve. It has been ROUGH and we feel helpless. The week after I wrote that post, we fasted as a family for direction and help. After that 24 hour period and some pretty intense, prayerful pleas, we started to just feel peace. I can't explain it exactly, but Todd kind of led the charge of "it's going to be ok" and that overarching feeling of peace was obvious in his mood, actions, and kind of gradually brought mamma bear down from the ceiling of anxiety where I had been residing for the past few weeks. Thankfully, we both knew that whatever came next, we were going to be just fine. In fact, we started to feel like we needed to listen to Matthew more--let him lead this charge. That feeling made no sense to me because Matthew is non-verbal and, as described before, pretty much just screams and scratches right now. But I have learned over the years that sometimes those feelings that make no sense in the moment come to make a lot of sense later, so I should just accept, embrace, and move on. So I did.
We met with the ENT and found out that nothing at all was wrong with his ears (inner, middle) and that his throat looked fine, but that all of the screaming might be doing damage to his vocal chords. Since Matthew isn't aspiring to be a famous opera singer (that I know of), this did not stress me out. I kind of said "darn" since I was hoping there was fluid or something in his ear that was causing him to scream. What horrible Mother wants something to be wrong with her kid? Sorry people...it would have been an easy answer and, given that we haven't had many of those lately, I was kind of excited about the possibility. He did suggest that there might be something neurological. I knew that in my heart, so I told him I'd already called the pediatrician for a referral to neurology.
Matthew's appetite continued to wane and his tremors and shaking along with waking up at night all continued and actually seemed to be getting worse. We also started to notice that, in addition to looking sleepy, it was almost like he was losing consciousness periodically and would just stare off and be "lost" to us for 5-10 seconds at a time. We took him to the pediatrician and there was nothing simple they could identify, so we kept plugging away with hope that this was simply a cold and would go away. He still didn't perk up though.
Thursday morning of last week, I was getting Matthew ready for school and looked over at him. He started to stare up and to the right and I had the distinct impression he was having a seizure. I just felt it...knew it in my sacred Mamma Gut. I sent him to school and, within an hour (I was mid-workout at the gym) got a call from the school describing "seizure-like activities" and expressing concern. So here I am in the corner of the gym trying to keep my composure as Mamma Gut kicked in again and I knew there was something going on. I got a call a little while later that day from the pediatrician ordering an EEG prior to our neurology visit. OK....here we go.
Later that afternoon/evening, Todd called our pediatrician and described all that had been going on that day. She suggested that we take Matthew to Randall Children's Hospital ER to rule out acute neurological degeneration and, if nothing else, expedite some of the tests that we knew we were going to need to do with him. She was SO WISE--the ER visit was a total bust, but everything was put on fast forward at that point.
The following Monday, our EEG got scheduled and Tuesday I got a call from neurology offering us an appointment two days later. Wednesday was the EEG, Thursday we would get answers. That never happens! To this impatient soul, that felt like a beautiful gift! I started to be excited for these tests (again, who is excited for crap like this?). I even started talking about what I expected from these visits: "hopefully we'll do the EEG and then she'll order an MRI or brain scan. Matthew needs an MRI on his knee, so maybe I can coordinate the two." I talked about it as though these tests were easy, normal, and logistics I just needed to plow through. And I had very little anxiety about it. In my head, I had already worked it all out.
Wednesday came and, shockingly, the EEG went great (relative to what I expected). Matthew did try to rip off the wires, but only chucked the phone and actually hit me in the head once, did not scream and cry more than about 10 times (all short lived) and held somewhat still during most of the test. He hated the strobe lights and I think that was when my noggin took a phone to it, but he managed! I was sooo amazed, grateful, impressed. I'm telling you, that idea of Matthew helping us to figure out what is wrong....started to realize that might actually be true. Check! EEG done.
Thursday arrives and Todd meets me at the hospital in Portland for the visit. History--back in 2011, they suspected Matthew might be having absence seizures and had done an MRI and EEG, but the EEG was inconclusive (he wouldn't hold still) and they weren't sure whether the abnormal patterns they saw were actually significant. Honestly, they had invited us to do further tests, but I did not feel the need and the spells we had been seeing all but disappeared (or I stopped noticing them). So we are there with the same doctor and she has the new EEG. We had a very logical and candid conversation with her about the results. This is what she told us (and I'll have you know that I was able to repeat back to her exactly what I heard with total composure)--Matthew has epilepsy. He is having a type of seizures called complex partial seizures that are starting from a specific place in his frontal left lobe. She is concerned about the seizures and treating them, but also really wants to try to understand what is causing them--the why. She told us that can be like searching for a needle in a haystack, but that she wants to try a few things...an MRI, genetic testing, etc. We looked at the EEG with her and she showed us the abnormal patterns she was observing, saying this is not the worst EEG she has ever seen, but is about a 6 out of a 10.
In the MRI, we are going to look at a small cyst they discovered during his first MRI that is located on his left frontal lobe. If it has grown and that is putting pressure on his brain, they might have to put a shunt in. If it is the same size, we can rule that out as a cause.
We left the office. I made it about three steps out of her office and the tears started to come. Matthew just walked beside me, holding my hand, and I held all the paperwork up in front of my face so that no one would see me. I got to the car and the flood came...I called Todd and just sobbed and sobbed. What I had been talking about--the tasks, the logic--all disappeared and all I heard in my brain is that my boy has epilepsy and something else to deal with. Yes, it is treatable, but with meds that I don't like. Yes, we have rescue meds if it gets bad. RESCUE MEDS?!?! He might need to be rescued?! And if we don't treat these, they could get worse and hurt his little brain. So I can't just go on pretending that it is OK and giggle as he stares off into space...and then say "OH! You're back!" to which he responds, "AWAKE!" and we go on with life. Now they are scary episodes of electricity in his brain that are hurting him.
I left that appointment scared and unsettled....big time unsettled. I couldn't call my closest friends or even my Mom. I couldn't talk about it. I just thought and thought about it all the way home. I cried and though and stewed and tried to make sense of why this was so hard--she told us things that we already expected and yet, somehow, it was worse than I expected. And I DO NOT feel settled. I don't think she got it right.
The next day we were at Shriners hospital with an orthopedic surgeon talking about Matthew's chronically subluxing knee cap. And, as expected, we might need to do surgery and are going to get an MRI (yay! My logistics will still work out and we can get two MRI's while he is unconscious only once). We also got a new brace. It was a very successful, non-emotional visit. The kind I like.
That afternoon, I knew I needed to talk to the neurologist because, no matter how much I tried to reconcile what she told me with my Mamma Gut, I was still getting chewed out by my insides. So I called....and told them exactly what I felt. They said to hold off on everything until Monday when I could talk to the doctor and I immediately felt this intense relief. And then this weekend, I have spent quite a bit of time researching seizures and starting to realize why I feel so anxious. What she has diagnosed him with is MUCH more serious than what I thought was going on. Todd keeps making fun of me...reminding me that the 101 course I can get in epilepsy from the Web is a little remedial compared to the years of professional training and experience this very competent doctor has, though he totally supports me expressing my concerns and opinions. Mamma Gut isn't claiming to have a PhD...I'm just convinced that we don't have it right yet.
If I find out that I am just in denial, so be it. But I believe in the power of the Mamma Gut. If I found out that we did NOT, in fact, get it right and I save Matthew from unnecessary medication trial/error and possible set backs, it is totally worth it. So the waiting game starts again. We are hoping to talk to her tomorrow and I will post an update at that point, but today, I'm grateful for the Gut and am just going to hang out and wait....at least I'm not in my anxious stuck-to-the-ceiling space anymore. Just a bit of a sad, slightly emotional, tender space as I grieve for the things that my Matthew is going through. Autism is hard. Poop problems are stinky and horrible. And epilepsy in any form sucks. BUT....he is still Matthew. And he isn't suffering (we might be a little, but he isn't) and for that I am grateful.