Last week was one of those medical appointments I had to have. I knew it was coming. I knew I had to do it. But I didn’t want to.
The appointment wasn’t for me. It was for my daughter.
At this moment she is sitting beside me on the couch. I have her feet elevated, with an ice pack on them. Her toes are hot and red and swollen. She says they don’t hurt too badly, but she limps when she walks. And she doesn’t want to walk much right now.
I’m betting you all have a pretty good idea where this post is going.
This scenario is not common…but it is occurring more and more lately. She often has little aches here and there. Sore ankles. Sore elbows. Sore knees. Usually both at the same time. Symmetrical…
But it’s very, very mild. The kind of ache that she mentions, but is easily distracted from. If something fun is going on, she forgets all about it. So I know it’s not bad pain.
Then three weeks ago her right elbow hurt so much she couldn’t straighten her arm. She didn’t remember injuring it. She was in tears. She told me it felt like it was broken. An hour later she told me the other elbow was hurting too, but not as badly. I gave her ibuprofen and that eased the pain enough so that she could sleep.
In the morning, her elbow was completely fine.
This is all sounding horribly familiar, right?
Its winter here, and I have noticed that she gets Raynaud’s Syndrome from time to time. Again, it’s mild. Her fingers go yellow and bloodless. They don’t progress to purple and painful. She finds it annoying, but says it doesn’t hurt. I bought her some gloves or she puts her hands in her pockets. No big deal.
Also for the last few months she has been waking up with red, raw, inflamed eyes. I gave her antihistamines in case it was an allergy. No help. I took her to the doctor, who despite my telling her that I’d already tried antihistamine drops and antihistamine tablets with no relief, prescribed antihistamine drops. Very frustrating. Typical. The doctor didn’t listen to me at all. Waste of time. Not surprisingly the drops didn’t help.
Her eyes look so much like my eyes when they are flaring, I was pretty sure I knew what was going on. Every morning and evening they become red and bloodshot and light sensitive. They improve as the morning goes on, and the redness and soreness returns in the evening. I gave her some of my moisturizing drops that I use daily, and she said they helped.
So I know you can all add all of this up. Several autoimmune signs, with joint pain suspicious of arthritis.
It’s all very mild. I’m not panicking – I’m just watching and waiting. It is certainly not bad enough for her to be put on a dmard. But I am keeping a diary of her possible flares and the severity of them. Only twice in the last few months has it been painful enough to stop her doing something that she wanted to do. It’s also quite possible that these were injuries, and completely unrelated.
But the red, hot swollen feet meant that it was time to take her to the doctor. My doctor.
He gave her a brief exam, but nothing was sore on that day. I told him that she has growing pains, Raynaud’s and now inflamed eyes.
He knows me well, and he knows I don’t make a fuss, unless a fuss is required. He asked me how aggressive I would like him to be.
I told him that I fully understand that early diagnosis is key. But I don’t believe she is diagnosable. She does has several suggestive signs, but the only really concerning aspect is her eyes. They are most certainly dry and light sensitive, but if there is any sign of inflammation or uveitis or similar, then I would like bloodwork.
He agreed and referred us to an optometrist, as a referral to an ophthalmologist would take 4 to 6 months.
The optometrist examined her yes, and diagnosed dry eye syndrome. She prescribed eye drops and eye gel at night to moisturize her eyes. She recommended a referral to an ophthalmologist if she needs to use the drops more than five times per day.
So I am watchful, but not truly worried yet. I had Raynaud’s at her age. I can see that her ‘growing pains’ are mostly mild. She can usually keep playing regardless. Only twice have they been ‘bad’ and even then, ibuprofen relieved the pain.
In the last week, however she has had painful knees, painful Achilles tendons and now, today, next to me, red, swollen hot feet.
If she continues to have three or four episodes of joint pain each week, even if mild, I will ask for bloodwork and a referral to a rheumatologist. My rheumatologist, in fact.
Just to be sure.
If she is anything like me (and let’s face it, it’s likely) then her bloodwork will be clear. If her pain becomes severe I will have her joints examined under ultrasound. If there is inflammation, it will be visible and unequivocal.
I know many of you will be thinking I need to get her to a rheumatologist STAT, because early diagnosis is so important. And I know this, and understand this. I am keeping a diary, and I am seeing my rheumatologist tomorrow. I will mention my daughter to her. Get her opinion as to whether a referral is necessary yet.
My reading says that Rheumatoid Arthritis is not considered hereditary. That family members only have a very slightly elevated risk of developing the disease as opposed to the general population. My rheumatologist has told me the same thing.
So I am not feeling any misplaced guilt or responsibility. This disease just happens. It may happen to my daughter. It may not. She is prone to anxiety so I am not putting her through a battery of tests unless absolutely necessary.
In fact I think if she is destined to develop a form of inflammatory arthritis, she is quite lucky. I know what these symptoms could mean. I know the treatment options and will be able to make informed decisions on her behalf. A ‘normal’ mother wouldn’t put these symptoms together. Most GPs wouldn’t either.
And they could mean nothing at all. Or they could mean that she develops an autoimmune disease later in life. I had Raynaud’s at her age. I remember being teased about it at school. It took twenty five years and a lot of other factors to become Rheumatoid Arthritis and Lupus and Sjogren’s and all the rest of it.
Whatever happens, I know that because I am educated and aware, she will have the best possible treatment, and the best possible care.
And if you think I fight hard for my health, just wait until you see what I will do for my child.