This is Natalie at 21 months, about four months before her JRA started. She had always been a chubby baby, and that is how I remembered her body. Her chubbiness is the only way I can explain not noticing the swelling when I doing her diapers. The chub on those legs closely mirrors the swelling that emerged as she thinned out over the winter.
Natalie's symptoms started the first Friday night in November 2011. She had been fine all day, but then that evening she cried off and on for two hours, for no apparent reason. I was hosting my first book club meeting the next day; I worried Natalie was sick and I would have to cancel. But then, in the morning, she was fine. She went with Mike to the mall during my book club (where they purchased second Baby Kitty), and ran around having a wonderful time. But over the next few days, she continued to have periods of time when she was upset for no discernible reason. Monday morning, we went to our play group at the community center. The group facilitator, secretary, and our home visitor all noticed the odd way Natalie moved. I hadn't distanced myself to see it, but Natalie was holding herself stiffly, particularly her neck. These women insisted that I bring her to the doctor; I called and made the appointment right then and there.
|For me, this picture says a lot. I can tell from Natalie's whole body language that something is seriously wrong. This is Natalie at the library some time later, but it is an example of the odd body language she adopted.|
Our first doctor's appointment was about as unsatisfying as you can get, but, in retrospect, I learned a lot about bringing my child to the doctor from the experience.
Lesson #1: If it is not an emergency, wait until you can get an appointment with a real doctor. This first appointment, we saw medical assistant of some sort. It was a young woman I had never met before and don't believe we've ever seen since. Now, I understand the need for such personnel at a large practice. The head of practice can't see every patient to check for ear infections and diagnosis colds. But, the woman we saw offered no help. She spent a few minutes checking Natalie's neck and a few other basic areas, and that was it.
Lesson #2: Don't say what you think the problem might be until the doctor has given an opinion. Natalie's symptoms baffled me; the only reason I could come up with for why she acted like she was stiff and in pain was teething her three of her two-year molars. Well, guess what? We left with the doctor agreeing with me and nothing more. She did however comment about a canker sore or two in Natalie's mouth, which, again in retrospect, is significant. (Often JRA presents along side a virus, of which canker sores are a sign).
Lesson #3: Don't walk out of the office with a wishy-washy answer, even if it means making a fuss. Looking back at this appointment, I should not have left without a more satisfying answer or at least other possibilities and information about what to do if it turned out teething was not the answer. I should have pushed it. Instead, I was frustrated and Natalie continued to be be miserable. I gave her Tylenol as they directed, which was a huge battle with next to no results.
By mid-November, I had noticed much more, but didn't understand the symptoms. Looking back at my blog post from November 17th, these comments are now striking:
- She just wanted to sit on my lap and suck her thumb, or have me read to her, but not kiss or hug or touch her. She'd push both of us away while sitting on us.
- After those first nights of whining, she is sleeping like a rock once asleep, including falling asleep earlier in the car on the way home, and sometimes to, activities.
- She has trouble getting up and down on the furniture. This happens two different ways. Sometimes she says she can't get down. Other times you'll watch her trying to get up and down and she just can't seem to do it right. She keeps trying, visibly getting more and more upset. Her body movements just aren't right. But then there are other times when she says she can't do it and you just don't help her and she does it fine.
- Today at nap time, she kept crying out every few minutes. So I went in and she's sitting up. She tells me she can't lay down.
- [When I woke her up] she started crying immediately. She didn't want to get up at all. I wound up letting her stay on the bed curled up with her kitty for at least ten more minutes. Then I said she could come watch TV. She sounded happy about that and got up out of bed fast, but then stood there crying next to bed.
I often felt like I was a piece of furniture. All Natalie wanted to do was sit in my lap; when she wasn't there, I was nursing infant William or letting him sleep in my lap. Natalie's fun, outgoing personality disappeared. She lost weight. She gained no height for almost a year, and she wore the same pair of shoes for over a year.
After a couple weeks, we determined that teething could not cause the issues we were seeing, and made a second appointment, this time requesting one of the heads of practice on November 18th. We met with Linda Glass, who actually was the same doctor who sat down and talked us through Natalie's jaundice back when she was just days old. We liked and trusted her. She checked Natalie over fully, asked us a bunch of questions, and watched Natalie walk around. The diagnosis was torticollis, which is a stiff neck. We were told to use ibuprofen because it helps inflamed muscles and to use heat in the form of a rice sock. Natalie was better after the first dose of Motrin. Back to her old self running, smiling, laughing, talking up a storm, climbing on the couch, and playing with her toys. We were beyond delighted to see her happy again. She had a few rough patches over the weekend, but she is back to normal.
Or so we thought. The Thanksgiving holiday at my parents', November 23rd and 24th, was a nightmare. The days were back to a lot of quite thumb sucking sitting on our laps. But the night was horrendous. She woke up crying and disorientated. It was her first time sleeping in my old bedroom, but how upset she was didn't seem to fit the situation. There was no reasoning with her, and it was next to impossible to calm her down. I thought she was having night terrors. We dealt with this for two nights before heading home. She slept much better once we got home. Looking back, the trouble at my parents' must have been just too much pressure. She was still in pain and in different surrounds for the first time since the symptoms had started. Also, her potty training, which she had initiated a few weeks before, completely deteriorated.
Before Christmas, we went back to see the doctor. Since Natalie was not back to normal, the pediatrician wanted us to get a CT scan to rule out a brain tumor. Because Natalie was barely two, the doctors recommended anesthesia to help make the scan less scary and ensure she would hold still. I talked to my parents about it, and my father offered to talk to my pediatrician uncle. He called me a couple days later and we talked about everything. He recommended seeing a neurologist before exposing her to radiation. Mike and I were now conflicted. Natalie caught a stomach bug, and we scheduled a new appointment at the pediatrician's. Ordinarily, we don't go to the doctor over such ailments, but our doctor had told us to call if a variety of symptoms presented (as did my uncle) and one was vomiting. While at this visit, she made us feel much better about getting the CT scan to rule out a tumor, and we came to understand we could attempt the CT without the anesthesia first if we liked.
The CT was scheduled a couple days after Christmas. While Natalie did better than at Thanksgiving, it is an infamous Christmas now as we all got the stomach flu. (I mean ALL. It started with me on Christmas day, then moved to Mike and his mom who was visiting from Florida; and my parents, pregnant sister and her husband, and brother all got it, as well as two of Mike's cousins. Even four month old William actually vomited, versus just spitting up, at least once). For the day of the scan, Mike was out of commission from the stomach flu, but luckily his mother was in town and she didn't come down sick until the next day. So, Mike's mother accompanied Natalie, William, and I to the hospital. Luckily for us, William slept pretty much the whole time. Natalie wasn't allowed to eat before the scan, which was okay for a while. But then things started to run late. Natalie knew we were waiting for the doctors, so she got upset when she saw doctors and it wasn't our turn. Finally, we find out that we are waiting on the anesthesiology to have an open bed. We've opted to not use the anesthesia, so we have been waiting for our actual scheduled scan time. Very frustrating for a two year old. Finally, I bring Natalie into the room for her scan. It takes a few tries, but she does the scan awake. In the end, it was singing to her and telling her to close her eyes that did the trick. We then go to Wendy's for lunch, which makes Natalie very excited.
I don't remember how long we had to wait to find out the scan was clear, but it was. This meant we moved forward on a referral to physical therapy to work on her neck. We went to the PT before the holidays season was over. The woman was very nice and mostly just played with Natalie for a bit. At the end, she said there wasn't really anything she could do for her, and she referred us to a chiropractor. For the next eight weeks or so, I took Natalie to the chiropractor about once a week. He agreed that there was tightness in her neck, and adjusted it each time. Natalie's neck got better, but as her neck was taken out of the equation, we were left with a variety of other symptoms. She had pain that was not constant. We began to notice it was worst after sleeping. When I'd do her diapers, she couldn't easily get down on the floor. She squat half way, and then just fall on her butt. Getting up from the floor was also difficult.
And then, one day in late February, I noticed her knees. Did they look normal? I looked at them again and again. I looked at my knees, and William's knees. Everyone's knees started to look strange. Natalie never actually complained that her knees hurt ... or her hands, or wrists, or ankles or that matter. She did complain about the cold, especially when held her hand and asked to her move more quickly as we tried to get from our car into the library. We decide to schedule another appointment with the pediatrician to discuss the pattern of symptoms that has emerged.
Below are pictures from three play dates that were pivotal for me. A year later, these three days are clear in my memory. Each one corresponds with a step in accepting Natalie's JRA.
The first picture is from one of the first group play dates on March 2nd, just a few days after discovering JRA as a possible explaination. Going up the stairs into my neighbor's house was very shocking. Natalie could barely go up the stairs at all. Over the course of the winter, we rarely did stairs. Everywhere we went, I had William in the car seat in the stroller, and we had to take the elevator at play group and the library. I knew stairs gave her trouble, but did not know she had basically lost the skill. I am stressed during this play date because we are bringing Natalie to the doctor that afternoon. I share with other moms what had been happening, and even showed them her knees. They agreed that her knees didn't look right.
We meet with the pediatrician. She checks Natalie over and hears about what has happened over the last few months. We make sure her knees are looked at, and describe her morning stiffness. I don't believe we mention JRA. Dr Glass agrees that her knees don't look right. She makes no statements about what the problem could be, but she makes a referral to a orthopedist. It is a month away. So, we continue to wait.
This next picture is March 4th when we invited our neighbor and her daughter to our house. Almost all of our play dates occur during the week, so it had been a very long time since Mike had seen Natalie interact with other kids. Our little neighbor could do so many things that Natalie could not. We saw her hand strength compared to Natalie, as well as her ease and fluidity at running and crouching. It was a hard day for both Mike and I, but with no answer, we couldn't do much besides wait.
March 9th, we were at the play date pictured above. We were getting used to the idea that Natalie had JRA. Yet, I was very conflicted. I didn't want Natalie to have a serious disease, yet I liked that JRA is a clear answer and treatable. We were now going to see a specialist, but she started to have more and more good days. In retrospect, I personally believe that Natalie's symptoms were overwhelming for her at first, but as time went on, the pain decreased and she learned to deal with it. She was left with swelling and stiffness, which limited her mobility, but didn't hurt her like it had at the onset. As the spring set in, Natalie's spirits were higher. She plays much more, but still didn't move like other kids her age. Case in point: As the other kids played Ring-around-the-Rosie, Natalie came running to me. She tells me that she can't "fall down" because it hurts. My heart breaks. It is the first time that Natalie seems to notice that she is different from the other kids.
March 11th, we make this video in preparation for our specialist appointment.
April 1st finally arrives. The night before, Natalie is sick, but we are determined not to break the appointment for fear of another month long wait. The appointment lasts only a few minutes. The doctor passes no verdict, but refers us to a rhuematologist. We hear him tell is secretary to insist that the rhuematologist sees us as soon as possible and to not take no for an answer. I get a call that afternoon saying we can see the rhuematologist the next day. I only met him once, but I am forever grateful to this orthopedist.
April 2nd is a long day. We schedule the appointment late in the day to accommodate Natalie's afternoon nap and the hour drive to Portland. Dr Fels checks Natalie over thoroughly. It is the first time that her whole body is checked by any of the doctors. (I can't help but wonder how much sooner we would have had an answer if someone had just asked Natalie to undress for a physical). Natalie cries the whole time, even though she talked a brave game before the doctor came into the exam room. Dr Fels is sure, even before he runs tests, that she has JRA. Her knees, ankles, wrists, and some of her fingers are swollen and have a highly reduced range of motion. He says her wrists are "impressively swollen." Next, is at least a half an hour of information he shares with us. Its a bit of a blur. Some of it we knew from research. Some of the time I am distracted by caring for William, including nursing him on the sitting on the office floor. I am emotional and overwhelmed and can only imagine what a parent would feel if she had not been preparing for this information for a month.
Before we can leave Dr Fels, Natalie gets x-rays and blood work done; we are lucky they have the facilities right at the office. The x-rays mainly are to look for any permanent deformity. This immediately calls to mind my grandmother's arthritic hands. I am worried because its been five months, but Dr Fels is not, and he is proved right when the x-rays come back normal. Natalie does well with the x-rays, especially when Mike plays a game about who can hold their hands still the longest. The blood work is much harder for her, but she gets through it. The blood work checks a variety of things including ANA (antinuclear antibodies) and rhuematiod factor. While rhuematiod factor is necessary for an adult RA diagonis, it is usually not present in children. Long story short, Natalie's blood work all comes back fine, excepting being a little anemic, and that clears up on its own in a few months, which makes total sense to me as her body regains normalcy and she eats and sleeps well again.
Our last stop before leaving: I also must be taught how to give her injection of her medicine, methotrexate. I am amazed at my ability to accept giving an injection to my child. We finally head home about two hours after the appointment started. We both call our parents to tell them the news. My mother says that she was reminded of her mothers knees when she saw my photo of Natalie's. Mike's mother is upset at all Natalie's had to go through and wishes she could have been there for her. Mike gets a bit emotional hearing his mother on the phone. Natalie says from the backseat, "Its okay, guys. Its just wind." She comforts us, unknowning of why we are upset.
|Natalie sleeps in the car on the way home from our first appointment with the rhuematologist.|
|Natalie's hands at the time of her first appointment with Dr Fels|
|Natalie's "impressively" swollen wrist.|
Dr Fels prescribed Natalie the once weekly injection of methotrexate. He planned steroid injections directly into her joints to provide immediate relief while the methotrexate builds up to its peak effectiveness. He also wants physical therapy, but tells us to wait until after the joint injections provide some relief. JRA also puts her at risk for uvitis, so we need to see an ophthalmologist every three to four months. (So far, we've been three or four times and each time her eyes have been clear, though Dr E has said she might need glasses around age 5, which is when I got glasses). We find a different PT associated with the hospital our insurance covers, and our current eye doctor's office takes Natalie on. We wait again for the injections, three weeks away.
a separate blog all about that day, so I won't repeat it all here. But, it goes very smoothly. Natalie might have done the CT scan with no anesthesia, but she is put under for the eight injections she gets this day.
We see results from the injections that afternoon! She is more active than we've seen in months. Below you can see side by side pictures of before and less than a week after.
|Side by side of before and after her joint injections. Those are her knees only four days after the injections.|
|Side by side before and after of joint injections for her wrists. This is only a four days later. You can still see the bruise from the injection. The doctor still says her wrists were "impressively" swollen every time we see him.|
|Natalie doing leg stretches to her doll.|
|Not really a big deal for a 2 1/2 year old to squat, unless she's been unable to do so for five months. We took this picture April 27th, shortly after the injections when we realized she could bend her knees all the way again.|
|July. First visit back to this park since therapy. Natalie conquers everything!|
This afternoon, my neighbor asked for a play date for her daughter while she went to the grocery store. Having just posted everything above, I was delighted to see Natalie and her friend jumping, hugging, and playing catch together. Natalie can easily now keep up.