Trusting our instincts

My almost three-year-old son was diagnosed with juvenile arthritis about a year and a half ago. It is an auto-immune disease that causes inflammation in his joints and if not treated could damage them permanently.

When my son turned one, just when he started walking I noticed that whenever I tried to put on his left shoe he would cry. To be fair, my son cried a lot. He was a “colicky” baby and is still a “colicky” toddler. I pointed it out to my husband who said he hadn’t noticed it and that the baby cried a lot in general.

A few months after he started walking I noticed that he was still falling a lot. Also, his walk was not as stable as other kids his age. I pointed it out to his paediatrician who said he seemed fine and that a lot of kids take longer to “stabilise”. I also contacted his physical therapist who treated him for torticollis when he was a baby. She too said some kids are just clumsy and it takes them longer to walk without falling.

I was reassured, but still something didn’t feel right.

Not long after we started noticing that he was walking on his left heel occasionally but not consistently. We could stretch his ankle and there were times that he would walk “normally” but the heel walking was hard to miss. In addition we started noticing that his ankle was now swollen.

Because his heel walking wasn’t consistent we took a video of him so we could show the doctor and went back to the paediatrician. This time they sent us for blood tests right away because the Dr suspected arthritis. He also went for X-rays. Both came back normal.

Next, we were referred to an Orthopaedic surgeon who also suspected arthritis and asked that we try to make an appointment with a paediatric rheumatologist. There are not many of them and the waiting period was going to be three to four months.

Within two weeks of seeing the Orthopaedic surgeon my son’s knee started getting stuck. He was 18 months old at this point and he could not bend his right knee. We went for an MRI, which for a child that small means general anaesthetic. It was a scary experience for all of us. The MRI showed that he had inflammation in his two joints they looked at.

We finally made it to see the rheumatologist. By then my son’s knee was “stuck” and would not straighten and he was almost exclusively walking on his left heel.

The rheumatologist said he had inflammation in both knees, both ankles, his wrists and some of his toes. We were devastated. She ordered a battery of blood tests. Watching my little toddler cry as they are trying to get eight vials of blood out of his little tiny arm was heart-breaking.

The rheumatologist prescribed a strong anti-inflammatory for the next month. It didn’t work. We saw her once a month. It was during one of the early visits that she said that he would need a steroid injection in his knee to try to manage some of the inflammation and help it get “un-stuck”. This meant more general anaesthetic for my little man.

After about two months on the anti-inflammatory, it was clear it wasn’t working. It was time to move on to a “biologic” drug she said. She prescribed ‘Humira’, which is a shot that we have to give him every other week. The concern with this drug was that it could suppress his immune system making it more difficult for his body to fight infections.

It has now been over a year. He still takes the shots but we have seen a huge improvement. He can run, climb stairs and jump, and he is a happy little boy. We also haven’t noticed him getting sick more often than other kids his age, though we have to remain vigilant of infections. Our hope is that in a few months we can start weaning him off the medication.

I am relieved to see him happy and healthy. I feel lucky to live near a major city with a good children’s hospital. We are also very lucky because we can give him ‘ Humira’, an expensive medication that a lot of insurance companies won’t cover.

As mothers we notice things before anyone else does. We know our children better than we know ourselves yet somehow we are willing to let other “consultants” tell us we are wrong, overreacting or overthinking things. I know that I was more confident to defend my instincts when I worked in communications than I am now that I am a mother 24/7. Though I will often say that I “do this for a living” so I know a thing or two.

If this experience with my son has taught me anything it’s that we should trust our instincts. If we think there’s something wrong with our babies we need to be pushy and demanding until we figure out what is happening. And if we’re wrong, and they’re fine, then no-one will be happier than us.

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