Juvenile idiopathic arthritis. That's what the doctors believe is the reason for Miss T's swollen and painful foot. Having myself received a diagnosis of juvenile arthritis at the age of 10, I've spent my life frustrated at the lack of awareness that arthritis can and does affect children.
And yet the news that my little girl, only 2 years old, could have arthritis came as a total shock.
8 year old D has been experiencing incidences of severe hip pain since last Easter. He has intense pain for a short period of a day or two where he can barely walk and then totally back to normal the next day able to run around and play as normal.
That is what my experience of childhood arthritis looked like, gradually increasing in frequency until the arthritis took over my left hip joint completely and I was left unable to walk.
So far the doctors believe D's condition is likely to be hyper mobility or growing pains. The 'growing pains' sounding like the familiar story I was told prior to diagnosis.
But Miss T's situation is different. Her foot went from fine to swollen so suddenly that we believed since the start of this year that she was suffering from an injury or possible break. Not pleasant but at least short-term and something that would soon be over.
The huge swelling, feeling hot to touch continous pain did not match up to my experience of childhood arthritis and so the thought did not even enter my mind. Yet apparently this is a common way of it presenting itself in younger children.
I know she is lucky that it has been picked up relatively early on. I know we are lucky that it is not anything worse. I realise that these days there are ways of stopping the disease progressing. But the thought of these drugs with such potentially nasty side effects terrifies me. Having to make decisions about her treatment worries me. And because she is so young, she will need to be sedated for the further scans she needs and that breaks my heart as I know she'll be brave but I just want to make this situation go away for her.
And yet I know God's hand is in this situation as coincidences like what happened only last week don't just happen otherwise. I was asked to speak at a conference about my own experiences of arthritis as a child. The others at the conference where some of the leading experts in juvenile arthritis presenting their research findings.
I was fascinated by the research and how even all these years on arthritis is still considered an old persons disease. A lot of GPs will not even consider it as a possibility in children and that can lead to delays in diagnosis. That makes it all the more incredible that Miss T's doctors are taking steps to consider arthritis as a likely explanation for the inflammation and swelling.
I am so grateful to those experts in that conference last week, as I would otherwise have a million and one questions about Miss T's condition but instead I feel I have some clarity about possible treatment options going forward. I am grateful for the team at GOPO for arranging the conference and for involving me. One of the amazing opportunities that came out of blogging was to take part in the GOPO trial and I found it to be beneficial to my own arthritis.
We are now hoping for Miss T's tests to happen in a timely manner and any onward referral to happen swiftly.
In the meantime, Miss T is continues to be extremely brave. Although her plaster cast was removed last week, the swelling is worse than ever and she is struggling to walk at all. Her foot is too swollen to wear shoes. Her knees are dry from crawling so much. And yet she smiles her gorgeous smile and hasn't once complained about the countless X-rays and blood tests she has had.
But Miss T's situation is different. Her foot went from fine to swollen so suddenly that we believed since the start of this year that she was suffering from an injury or possible break. Not pleasant but at least short-term and something that would soon be over.
The huge swelling, feeling hot to touch continous pain did not match up to my experience of childhood arthritis and so the thought did not even enter my mind. Yet apparently this is a common way of it presenting itself in younger children.
I know she is lucky that it has been picked up relatively early on. I know we are lucky that it is not anything worse. I realise that these days there are ways of stopping the disease progressing. But the thought of these drugs with such potentially nasty side effects terrifies me. Having to make decisions about her treatment worries me. And because she is so young, she will need to be sedated for the further scans she needs and that breaks my heart as I know she'll be brave but I just want to make this situation go away for her.
And yet I know God's hand is in this situation as coincidences like what happened only last week don't just happen otherwise. I was asked to speak at a conference about my own experiences of arthritis as a child. The others at the conference where some of the leading experts in juvenile arthritis presenting their research findings.
I was fascinated by the research and how even all these years on arthritis is still considered an old persons disease. A lot of GPs will not even consider it as a possibility in children and that can lead to delays in diagnosis. That makes it all the more incredible that Miss T's doctors are taking steps to consider arthritis as a likely explanation for the inflammation and swelling.
I am so grateful to those experts in that conference last week, as I would otherwise have a million and one questions about Miss T's condition but instead I feel I have some clarity about possible treatment options going forward. I am grateful for the team at GOPO for arranging the conference and for involving me. One of the amazing opportunities that came out of blogging was to take part in the GOPO trial and I found it to be beneficial to my own arthritis.
We are now hoping for Miss T's tests to happen in a timely manner and any onward referral to happen swiftly.
In the meantime, Miss T is continues to be extremely brave. Although her plaster cast was removed last week, the swelling is worse than ever and she is struggling to walk at all. Her foot is too swollen to wear shoes. Her knees are dry from crawling so much. And yet she smiles her gorgeous smile and hasn't once complained about the countless X-rays and blood tests she has had.
I just wish I was as brave as her.
No comments:
New comments are not allowed.