It’s been over a year since we started trying to figure out what is ailing Devin. I went back to read the first post I wrote about what’s been happening, just to refresh my memory. We’re definitely not in the same place, but we haven’t made a huge amount of progress yet, either. We seem to be more in the ruling things out part of the process, though we had some new possibilities suggested to us. The hard part has been finding a doctor who is open-minded and imaginative enough to want to try to figure things out.
The things that we know now are that there is something autoimmune going on, and there are definite problems in the knee and spine that show up on an MRI and (for the spine) a CT scan, but what exactly they are still isn’t clear (seronegative spondyloarthropathy is a possibility, but follow-up tests weren’t done correctly to rule it out or confirm it). The autoimmune condition was diagnosed based on blood tests done in the US over the summer, plus some additional tests of a remaining blood sample that were completed earlier this month. The doctor in San Diego is continuing to help us and seems to be the only one who is at this point, though I tried a few other options here in Ulaanbaatar as well.
When we got back to UB in August, we had a little more insight into some of the problems Devin was having. They started on a gluten-free diet and have been nearly gluten-free for over two months now (there was one slip-up when they were on a week-long school trip looking at archaeological sites in central Mongolia, and the cook made fried rice with soy sauce, which Devin reacted to pretty quickly). The doctor had thought a lot of Devin’s symptoms (joint pain and weakness, headaches, back pain, fatigue, light-headedness, brain fog, abdominal pain, etc.) could be caused by gluten sensitivity, so we had high hopes things would get better. Some symptoms have improved a little, though none have disappeared, and there are new symptoms as well (eye pain, for instance). We ordered the additional tests to see what else might be going on and came back with several positive results which coincide with the areas where Devin is experiencing problems (bone, connective tissues, and neurological tissues, especially). We’re doing several things to try to mitigate all of that, and we’ll see what happens.
The most disappointing episode was at SOS Medica Mongolia, which is supposed to be one of the best places to get care here. It’s not really close to where we live (we can take a bus part way and then walk about 20 minutes), but I’d been wanting to try it for a while, so I made an appointment with a Mongolian doctor there for one of Devin’s days off. When we got there, the appointment was switched to an expat doctor (they are way more expensive but believed to be better), and since I didn’t realize she wasn’t just an orthopedist (which is what I had made an appointment for), we mainly focused on Devin’s joint and back pain. I had the knee and spine MRI results from the other hospital with me, and she said they could be reinterpreted by radiologists in the Netherlands, but for some reason she only wanted to have the spine MRI reinterpreted and didn’t think what was going on with Devin’s knees was significant. She did a cursory physical exam, ordered some blood tests (mainly a CBC and rheumatoid factor, as well as a couple of other things), muttered something about growth spurts and “growing pains” (Devin has been basically the same height since 8th grade and had growing pains when they were 8 or 10 years old) and sent us on our way.
Based on the results of her cursory exam and the blood tests, the doctor decided that Devin didn’t have anything systemic, which we thought was a pretty wild conclusion. I had also mentioned the pain in all the other joints which had had no imaging done (at this point, it was knees, ankles, hips, elbows, wrists, and knuckles on both sides of the body; the wrist and hand pain started during the summer, but the others had been going on over a year). When I realized she was a general practitioner, I also mentioned the other issues – abdominal pain, fatigue, brain fog, light-headedness, etc., but she was dismissive of those and just asked about Devin’s stress level. When the reinterpretation of the spine MRI came in with a diagnosis of seronegative spondyloarthropathy, she called us back in for a follow-up consultation and ordered a CT scan at another hospital, Songdo, which we hadn’t been to yet.
We were to meet a nurse from SOS at the Songdo hospital for the CT scan, and she would help us through the process, and then the scan would be sent to the same radiologist in the Netherlands. The whole thing ended up costing three times what the MRIs at Intermed had cost, and the scan turned out to be too low quality and too wide a field to refine the diagnosis. We didn’t want to redo the CT scan because of the radiation. So we were left still not being sure what exactly is the problem with the spine, though there is clearly something wrong. We went back to SOS to discuss the results with the doctor, and she said again that it was nothing systemic, but prescribed Celebrex for the inflammation and pain, and we made an appointment with their physical therapist.
That was when the fun really started. Devin went in for an initial consultation with the physical therapist, and she and her assistant did several tests which caused Devin excruciating pain, including whacking them with a metal hammer. They decided there was “nothing wrong with the knees,” which we just don’t accept, since that’s one of the earliest symptoms Devin experienced, and were focused completely on the scoliosis as the cause for everything. Devin had done three months of physical therapy for scoliosis last winter and spring at the Bubnovsky Center in downtown UB, which had helped tremendously with the scoliosis but made the lower back and knee pain much worse. What the physical therapist at SOS proposed was some initial TENS and microwave or ultrasound therapy (similar to the three weeks of therapy Devin had at Intermed in the spring to help with the knee pain, which had had little effect, probably because it wasn’t done correctly), along with acupuncture, followed by core-strengthening exercises Devin could do at home. This sounded OK to us.
But during the first of what was supposed to be 10 or so appointments (two times a week for five weeks), the physical therapist suddenly asked Devin about their other symptoms – do they sometimes feel fatigue, do they feel lightheadedness when going up stairs, do they have headaches, etc.). After that, I asked her if she had an idea of what the problem would be, based on Devin’s answers to those questions. She said, yes, she knew what it was, and pulled me into her office while her assistant continued to electrify Devin’s knees.
She then showed me a PowerPoint slide on her computer of Sigmund Freud and the id, ego, and superego, and told me that Devin’s ego was underdeveloped. She said she was working on her PhD in psychology, and she had a friend who had gotten a psychiatric degree in Europe and could hook us up with anti-depressants. She said exercise wouldn’t help Devin, so she didn’t recommend proceeding with that part of the program, because Devin had somatic symptom disorder (SSD) and there was “nothing physically wrong”. They needed to be treated for stress with anti-depressants, acupuncture, and yoga. She gave me the contact information of the friend, and then we went back to the other room. I told Devin I’d explain when we were walking home, but the rage was already building. The physical therapist said we should be sure to see the other doctor on our way out.
So, when we were on our way out, we ran into the other doctor, who had us wait for a while so she could have a telehealth meeting first, and then we went to her office. She said, “So, you want to try anti-depressants,” at which point Devin’s jaw dropped, and we both said, “What??” She said she thought the physical therapist had spoken with us, and I said no, she’d spoken with me, but I hadn’t had a chance to talk to Devin. The doctor apologized, at least, and then went on to say that the ultimate cause of everything seemed to be anxiety, so anti-depressants should do the trick. I asked about the recommendation from the radiologist in the Netherlands for physical therapy to help with the spine problem, and that the physical therapist here said exercise wouldn’t help. It seemed to be a contradiction. The doctor said, oh, no that was probably a language problem, and what the PT meant was running or playing football wouldn’t help, not physical therapy. Well, that’s not what she said to me, so I didn’t think it was a language issue, but at that point I just wanted to get out of there. I also pointed out that Devin had been pretty thoroughly assessed by a psychologist in the US and neither SSD nor depression had come up. The doctor then docsplained depression to me (“It’s not just sadness, it’s a mood disorder…”), and I wanted to ask if they thought it was depression or SSD or both, but I also didn’t want to find out, because neither was likely.
Devin and I walked home (it’s about an hour walk) and ranted the whole way. We both agreed never to go back there, or at least not to see those two doctors again.
In the meanwhile, we had our follow-up consultation about the bloods with the doctor in San Diego. He went through the autoimmune results with us, and they did seem to map onto the problems Devin has been experiencing. We went over things to try to mitigate the symptoms. Devin’s continuing to eliminate gluten, and the doctor also suggested going off dairy, which we may try after we’ve eaten all the cheese in the refrigerator. He agreed that SSD seemed way off the mark.
He also said that given the timing, it was likely triggered by our move to Mongolia, which is what I had been suspecting. Even more likely was the year Devin spent studying online at night while we were trying to get to Mongolian, when they were in 9th grade. He attributed it to the change in latitude, and as I was reading up on that, I realized that given that the onset of symptoms was during the summer, when there is lots of light in Mongolia, it was more likely the night owl schedule for the prior year, plus the stress of moving three times, which I know did a number on me, too. This is going to take me a long time to process, but after we talked it over, Devin said, “It would probably have been triggered by something else if we hadn’t done all that, anyway.” Which may be true. And we had no way of knowing how their body would react to all of that.
The thing about Devin’s array of symptoms is that they could be caused by any number of things. We’re also waiting on the result of a Lyme disease test from ХӨСҮТ, the public infectious disease hospital, which we were able to get after a brief consultation with the Lyme disease specialist there. He showed us two tick samples in little jars and asked us what kind of tick we’d seen, and Devin wasn’t sure (yes, there was a tick involved, too, back when we lived in Bermuda Dunes, during the six months before we moved to Mongolia in 2021, but it wasn’t clear if the tick had bitten Devin or was just crawling around, and neither of us remembers the bullseye rash of Lyme, though there was something I thought was a spider bite). No doctor had mentioned Lyme disease as a possibility, but given that many of the symptoms coincide with untreated Lyme, it seemed worthwhile to get them tested for it.
So, we have made some progress, but we still have a long way to go. We’re once again feeling “doctored out.” We’re going to give the dietary changes and other things the doctor in San Diego recommended a good six months to see if they make a difference. So far Devin is still able to go to school every day and do their work (they are also making a webcomic commissioned by the author of one of Devin’s favorite book series). They are experimenting with mobility aids, mainly crutches and a cane, which definitely help but will take some getting used to. And we are trying to start a Tai Chi routine, as well as some yoga, though we both have the same difficulty establishing a new routine, so this could take a while. Maybe in the spring we’ll have the energy to start a new round of medical visits. Several people have suggested going to South Korea, which is what a lot of people here do. We already have plans for spring break, but we might go in the early summer.
I keep reading about people who took five or ten years to get their diagnosis, as well as people who never get one. I hope we find out what it is, and it would be nice if it didn’t take too many years. Devin is at an equilibrium state where they are uncomfortable, but they can manage. If we make any genuine progress, I will post an update here.
In the meanwhile, I’ve been thinking about what my purpose is in writing this post, and it’s certainly not to get medical advice from strangers who don’t know me or my kid. It’s mainly, well, this is happening, and guess what? Having a chronically ill kid is a full-time job, even if the kid is still able-bodied enough to do a lot of things. Most of my free time is devoted to trying to figure out what’s going on and what we can do about it.
Scheduling the doctor appointments is especially hard, both because I feel less and less like they will lead to answers and because of our time constraints. This semester, I teach in the morning, so I have a little more time in the afternoon, but now that Devin is in the Diploma Programme at their IB school, they have class until 4:00 pm two or three times a week. They also have study blocks, and I used a couple of end-of-the-day study blocks for appointments, but they need the study blocks to get work done, so that’s not a good option. Their first day of fall break started out with the trip to the infectious disease hospital for the Lyme test. But now I have a bunch of work obligations coming up that require considerable time, so we’re going to take some time to just try some of the suggestions from the doctor in San Diego, and we’re going to start a low-impact exercise program and see what that does. I’m still reading what I can find about various autoimmune disorders and hoping something will click, as is Devin.
So yeah, this is happening, and it’s very time consuming, but I will try to post about other things, too.