We have a tradition in our large extended family on Thanksgiving where we go around the room and each person says what they are thankful for. We don’t make our boys speak but this year Luke told us before it started that he wanted to say what he was thankful for. He has an incredibly sweet heart and he can pray like a Southern Baptist preacher, so I was prepared for something insightful and moving.
” I am thankful….that I’m hot”
This boy makes us laugh, makes us cry and makes us wonder how in the world we ever got so lucky to be his mom and dad. Over the last several years the boy has had so many challenges and he always faces them head on and with a smile on his sweet face.
As many of you know, we made the trip to St Louis about a month ago to see the neuromuscular specialists at the Neuromuscular Disease Center. Let me give you a little background first on how we got there.
Luke had a very normal early childhood, completely typical development and no major illnesses. Just two months short of his 3rd birthday, we got up one morning and he couldn’t walk. I would stand him up and he would fall right back down. He had lost complete muscle control in his legs and also had trouble sitting up on his own. Of course, we were completely freaked out and they admitted him to the hospital and began running tests, all of which came back normal. Within 24 hours he had regained the ability to stand and walk, although his gait was abnormal and he was still weak. A few weeks later he had an MRI and it showed there was a “spot” on his brain. It was explained as a thickening of the white matter in his brain and we then began the process of trying to figure out what was causing it.
Over the next year we would see a pediatric neurologist, rheumatologist, neurosurgeon and a few other specialists. Along each stop on the path, all the follow-up test that were run always came back normal. He was still having pain in his arms and legs but finally, it was decided that temporary paralysis and the MRI report were all due to a freak virus.
Over the years we still had concerns in the back of our minds but wanted to trust what the doctors had given us as an explanation. We still were seeing the lasting effects of the muscle weakness and then he was 5 he began complaining of headaches that started occurring once in a while and eventually became everyday. Along with the headaches, we began to notice that his eyes were dilating to the point where you couldn’t even see any of the blue part, just his HUGE pupil. That prompted a repeat MRI on Christmas Eve in 2010 and the MRI came back normal, the radiologists not seeing the previous spots that had been reported. We took this as great news, but we still had lots of concerns. Luke began a daily headache medicine and we did see great improvements in how often he was complaining about his head hurting.
As he got a little older and into school full-time, we became very concerned with his handwriting and how weak his hands always seemed to be. Again, the doctors ordered a bunch of blood work and everything came back normal and we were told again to just keep an eye on it. He has always been a very anxious kid and we noticed that often his hands would be very shaky, but we equated that with being nervous. As the school year ended and summer began, the shakiness wasn’t getting any better, in fact it was getting worse. Along with his almost constant hand tremors, he would get tired very quickly from any sort of physical activity. He began playing soccer and at the start of the game he was good to go but by about 10 minutes in, he could hardly run from one end of the field to the other and the whole time he was on the field, he was rubbing his legs like they were really hurting. Along with the headaches, the continuing crazy pupil dilations and shaky hands, he began to complain that his legs, feet and hands felt like they were “beeping” and then he began to complain that they actually hurt.
Back to the doctor we went and this time, our pediatrician ordered some more specialized blood work and a test that measures the levels of muscle enzymes in the blood came back very high. Our pediatrician called me at home on a Wednesday night and by Friday morning, we were in the pediatric neurologists office at Payton Manning Children’s Hospital. From there came more blood work and again the same thing we had heard all along, everything else was looking fine, so let’s just watch it and see.
In between that appointment and our follow-up appointment 3 months later, the hand shaking had become almost constant and his strength had significantly decreased from the physical exam just the few months prior. It was at that point that the neurologist suggested that we go to St Louis, as the doctors at Washington University were the top in the field and the clinic is funded and supported by the research of the MDA.
We made our first trip to St Louis expecting to get the answers we had been looking for, but instead really just came home with even more questions. Upon the physical exam, the doctors had several ideas as to what the underlying conditions might be. They ordered a bunch of lab work and later that afternoon he had an EEG, EMG and muscle ultrasound. The first of the two tests can be extremely painful and Luke laid on the table for both of them like he was laying on the beach. He had a repetitive nerve stimulation study done and the tech said most adults can’t withstand the pain and Luke barely batted an eye. Of course, for a parent, it’s a huge relief to know that he was not in pain, but at the same time, that is scary to see your boy laying on a table with needles stuck into his muscles and he doesn’t really seem to even notice.
As he had each of the tests done and as each one came back normal, nothing seemed to match up. By the time we had left to come back home, the doctors were just as frustrated and stumped as we were and we decided to wait until all of the lab work was back before we went any further, expecting that the lab work would hold the answers we were looking for as to why they would see all of the things on the physical exam and no correlation in the tests they had run up to that point.
Of course, all the lab work came back normal which is fantastic news, but it doesn’t give any answers as to why our boy is suffering so much. I had a great conversation over the phone with our St Louis doctor and it was then that he said this might fall into that 5% of cases where they aren’t able to diagnose because it is either just too rare or science isn’t advanced enough yet to test for it. By the way, those are not the words that you want to hear from the doctors that are the experts in the field.
We discussed where to go from here and along with some additional lab work, he suggested a muscle biopsy and a skin biopsy to test the fine nerve endings that might explain why he doesn’t feel much pain. While he was recommending that we go forward with the muscle biopsy, he was very clear about wanting us to understand that there is still a very good chance that we won’t know anymore after the surgery than we did before.
We were struggling to reach a decision because we didn’t want to put Luke through even more than he’s already had to deal with but at the same time, we felt like we would constantly be wondering if we didn’t. We ended up talking to Luke about it and trying to explain to him exactly what would be involved in the surgery and what he might feel as far as pain. We told him that we would do what ever he wanted, honestly expecting that he would say he didn’t want to do it. Instead, after talking about the procedure he said “I just wanna do it if it means there is any way they will be able to help me feel better.” How do you argue with that?
On Monday morning Luke and I will be leaving to head back to St Louis where he will be undergoing the muscle biopsy surgery early Tuesday morning. We have been waiting to get into see a new doctor for Isaak for almost 2 months and of course, it ended up that they were both during the same time, so Brett will be staying home to take Ike to the doctor.
We would love your prayers for the whole Patterson clan as we go into another stressful week. Our heartfelt prayer is that the test will show exactly what it is that is causing Luke to have muscle pain and to have all of these symptoms that are really interfering with his daily life. Our position has been along that we can handle anything, lets just figure out what it is and then we can make a plan on how to treat it.
As parents, we stood before our church and our family early in each of boy’s lives as we dedicated them to God and in those moments, we trusted Him completely but to be honest, it was easy to trust Him when everything was going well. The challenge has become trusting Him when it’s hard to see what His plan might be, but along each step of the way we are constantly being reminded that He is always and only good. We are thankful to have the support of such an amazing family and of great friends and we are most certainly thankful for the boy that continues to amaze us and inspire us.
And we are certainly thankful that he is hot.