This particular post won’t be about cancer. I’ve mentioned a few times on this site that my youngest son Ashton has medical issues. In the past I’ve used Facebook to keep family and friends updated as to his status. Going forward I am going to share the updates here. To get everyone up to date I’ll do a not so brief summary of what has happened with Ashton over the last year.
Ashton’s story began a little over a year ago when the wife and I were moving our family to a new house on the lake. All three boys were helping me clean out the basement in our old house. Somehow he fell into a plastic bin while carrying a picture. Ashton then began to cry and said something was wrong with his shoulder. I took a look at him and it appeared his left shoulder had kinda come out of its joint. I say ‘kinda’ because I’ve seen dislocated shoulders before, and this didn’t quite look like that. His arm was just hanging as if there was no shoulder. This is a condition we called “dropped” in our household now…
I gave my wife, Mindy, a call on the way to the Emergency Room and she met us there. The doctor at the ER seemed as confused as I was about the appearance of his shoulder. After an examination and x-ray the doctor said she couldn’t find a reason for the way Ashton’s shoulder was hanging. After conferring with another doctor on the phone, the ER doctor prescribed Ashton some muscle relaxant. It seems too long ago this, happened I can’t exactly recall the reason for the muscle relaxant. Ashton was in gymnastics during the summer, and we thought maybe he did something to his shoulder there.
For a couple of weeks things went fine. The muscle relaxer seemed to fix his shoulder issue. Then I received a call from Ashton’s school. He was in pain and his shoulder was “dropped” again. I still had some muscle relaxer and brought that to him. That seemed to fix the problem again, although it took a few hours. In the mean time we set up an appointment with an orthopedic doctor for Ashton. The referral for this doctor actually came from the ER doctor, although I had yet to set up the appointment because he seemed to be fixed. During the weekend prior to the orthopedic appointment his shoulder dropped more often. We realized by this time the muscle relaxer was doing nothing. Whether he had muscle relaxer or not, his shoulder would drop for a few hours and go back to normal as long as he didn’t overuse it.
When we finally had the orthopedic appointment Ashton’s should was dropping more often, at least once a day. He had a full exam. The orthopedic doctor put Ashton through a series of motions and tested his muscles and bones. The doctor noted Ashton had very strong muscles and there didn’t actually appear to be anything wrong with his bones. However (and isn’t there always a however), he said the problem is more widespread than just one shoulder dropping. With Ashton’s shirt off the doctor had us look at his back. To me his back looked normal. But the doctor noted his shoulder blades sticking out of his back. This is a condition called scapular winging. After the doctor pointed it out I was able to see just how bad it was. His shoulder blades stuck way out. Since Ashton had always been this way, we really never noticed the winging. The orthopedic doctor believed Ashton may be suffering from some sort of nerve or muscle disorder; both of which are out of his area of specialty. He said he would try to find a pediatric neurologist to refer Ashton to.
After a couple of weeks we finally got a call letting us know Ashton would have an appointment with a pediatric neurologist in Fargo. The only problem was the appointment wouldn’t be for about four months. Because of that the orthopedic specialist needed to fill out some sort of paperwork on their end and get Ashton’s case prioritized. After a couple weeks we had to meet the orthopedic doctor again. He informed us the pediatric neurologist he had originally referred us to was the wrong type of specialist and Ashton would not have an appointment in Fargo.
Once again the orthopedic specialist went about finding the right type of pediatric neurologist for Ashton. The doctor also noted this should be done by Ashton’s primary doctor. Since moving back to South Dakota some years ago our family has not had a primary physician. It never occurred to us this would be important. While the orthopedic doctor was working on getting a new referral I setup an appointment with a pediatrician I hoped would become the primary doctor for the two little boys. The doctor I met with ended up being a great doctor and as time went on became a great central point to make sure the medical records from various specialists all made it into Ashton’s file. He also helped us to understand what some specialists have said over the the last year. Oops. I’m getting off track… Back to Ashton’s story.
Finally in about November of 2017 Ashton had an appointment with a pediatric neurologist. We would have to bring Ashton to Gillette Children’s Hospital in St. Paul, MN. From November of 2017 to spring of 2018 we made many visits to St Paul for Ashton to be tested and meet with doctors. The neurologist believed Ashton may have some form of Muscular dystrophy or a neurological disorder. Ashton went through a series of genetic tests to rule out various neurological and muscular dystrophy related conditions. He also went through x-rays, CT scans, MRI’s and a host of other tests.
As time went on Ashton’s condition continued to deteriorate. By the end of the 2017 Ashton would miss a day of school every week or two. As we got into January and February of 2018 it became even worse. Ashton would be home from school one or two days a week. On these days Ashton would have extreme pain throughout his body. The worse of it would focus on his shoulders, knees, and sometimes his lower back. This would last for a day or two, and then suddenly he would be back to normal. It was during the middle of this time-period that Ashton first had to use a wheelchair, and it was for about a week. The poor kids knees hurt so bad he simply couldn’t walk. The doctors showed some exercises to help, and eventually he was walking again. Mentally Ashton was getting in rough condition at this time. He was tired of hurting for no apparent reason. And doctors appointments were weeks between each other to give time for various genetic tests to come back. The long periods of waiting for news from doctors really took its toll on Asthon.
When spring arrived we had our final appointment in St Paul. We actually met a different pediatric neurologist this time; our previous neurologist had unfortunately passed away earlier in the year. The current pediatric neurologist let us know all test results had come back and he said with full confidence that Ashton does not have muscular dystrophy. He believes Ashton is suffering from a type of hypermobility and that a referral to a closer hospital such as one in Sioux Falls would be possible. This was both great news and horrible news. On the one hand it was good to know Ashton doesn’t have MD or any of the other neurological conditions they tested for. But then we realized Ashton would be seemingly starting over with new doctors. The poor kid was not happy about starting over.
Time to pause this story for a short blurb about hypermobility. Here is part of what the Hypermobility Syndromes Association (HMSA) has to say abotu hypermobility:
What is hypermobility?
Hypermobility is the term used to describe the ability to move joints beyond the normal range of movement. Joint hypermobility is common in the general population. It may be present in just a few joints or it may be widespread. It is most common in childhood and adolescence, in females, and Asian and Afro-Caribbean races. It tends to lessen with age. In many people joint hypermobility is of no medical consequence and commonly does not give rise to symptoms. Hypermobility can even be considered an advantage, for example athletes, gymnasts, dancers and musicians might specifically be selected because of their extra range of movement.
For a small percentage of the population, instead of being advantageous, hypermobility may be associated with joint and ligament injuries, pain, fatigue and other symptoms. Hypermobility can also be a sign of a more serious underlying condition, which are often passed down through the generations. These conditions are known as Heritable Disorders of Connective Tissue (HDCT).
Ashton had always been flexible. That was part of why he enjoyed gymnastics so much. Actually during his diagnostic phase in St Paul his hypermobility had been noted. But at that time it was thought the hypermobility was a side-effect of muscular dystrophy.
At this point Ashton’s pediatrician was handling the referral. It took a while to find the right type of specialist for Ashton. Finally at the beginning of summer he had an appointment setup for September. We weren’t happy about waiting a few months. But we were told the Sanford Children’s Hospital in Sioux Falls was hiring a new genetic doctor specializing in cases such as Ashton. So we decided to wait it out and see how Ashton handled the summer.
The summer went pretty well for Ashton. He didn’t have to use the wheelchair at all. He still had one or two days each week he couldn’t move. But since we were home he would just hang out in his room. Ashton played midgets baseball. On the days he was having problems the coach would work with him and let him sit on the bench if he was too sore or his shoulder was dropped. There were a couple of game Ashton wasn’t happy with me or Mindy. When Ashton hurts really badly he doesn’t want to be around people at all, even if he can walk. One of the previous doctors said it was important to keep him social and make him go to school or sporting events, even if he couldn’t participate fully. So we did make him go to some games despite his protests. Overall though the summer went pretty well and we were almost thinking he was getting better. Then school began again.
Once school started again he was back to having one or two days a week where he had problems with his knees. Looking back, we don’t really think he was getting worse. It’s just that he didn’t have to move during the summer if he didn’t want to. School involves a lot of walking throughout the day. Instead of keeping him home every time, we were now sending him to school with a wheelchair on the really bad days. Since the beginning of this school year I would say he has had about five or six weeks where he went to school a day or two in a wheelchair.
Ashton’s appointment finally came in September. The only problem was it was set for the second day I would have my first round of chemo. At that time my breathing was so bad it was not possible for me to reschedule chemo; and we had waited so long for Ashton’s appointment we didn’t dare reschedule him. So Mindy took Ashton to Sioux Falls for his appointment while my brother-in-law sat through chemo with me. I really wish I could have gone to Ashton’s appointment. That is another thing cancer has taken from me…
The appointment with Ashton went well. Most of the time was spent by Mindy answering questions for the geneticist and going through his history. The doctors at the Sanford Children’s Castle believe they have a good idea of what type of hypermobility Ashton has. But just as the doctors at Gillette Children’s Hospital had noted, Ashton has some other symptoms that just don’t align with anything else. So he is also being tested for some other neurological condition which may or may not be related to hypermobility. His appointment with a neurologist at the Castle is actually coming up at the end of October.
Ashton also has an appointment with an occupational and physical therapist coming up. The doctors at the castle are covering multiple methods of diagnosing and helping Ashton with his pain. I really appreciate that.
I think two thousand words is enough for one post. In this post I shared a cliff note version of what has happened with Ashton over the last year (I could write a full book about everything that kid has gone through in such a short amount of time). Hopefully this post will help some family and friends of Ashton understand what he has been going through for the last year. I will post any major updates on this site to help keep people informed about his status.