 |
| Miss T left foot swollen (shown here on right of photo) - This is miles better with medication than original swelling |
In 2015 we started the year with a little girl with a broken foot (or so we thought). Yes it was a pain. She couldn't be bathed, couldn't go swimming, missed lots of her favourite toddler groups and activities. It was a huge strain on my back given my problems with arthritis. But we all kept our chins up and kept smiling knowing it would all be over in a few weeks. Even Miss T did not once complain about being in plaster even though we could see it wasn't much fun for her having to be stuck in her buggy when out and about and be carried around the house unable to walk.
 |
| Swollen Right knee (shown her in left of photo) |
 |
| Swollen Right toe (shown here on left of photo) |
This week we saw the orthopaedic consultant to hear the MRI results. And finally a diagnosis. They had suspected juvenile arthritis given my history of arthritis, but the results of pretty much everything else weren't matching up with their suspicions. Finally the MRI showed synovial thickening in the right knee and left mid-foot and ankle.
 |
| under sedation for MRI |
So finally a diagnosis.
In many ways a relief that it is nothing worse, but at the same time a feeling of sadness that she is only 2 and she's having to go through this.
Without the strong anti-inflammatories and pain relief medication she is currently unable to walk. So I find myself thankful that the meds are working and enabling her to walk (and even run around sometimes!) but I hate the fact that she is taking stuff so strong that I get third degree questioning each time I pick up her medicine from the pharmacy with them reminding me that it is unlicensed for children and asking what exactly is wrong with her to be taking such strong medication. I hate that she is having to take additional medication to protect her stomach because her meds are so strong. I hate that I have to give her sweets for breakfast to help her take her medicine because it tastes so yucky.
And I know this is just the tip of the iceberg. The treatment options are worse. The side-effects can be horrendous. She's in for a tough few years.
I wrote most of this up a couple of days ago but couldn't bring myself to hit publish. The blog is my happy place, where I escape to, where we store happy memories to look back on.
But then yesterday I heard of another little girl. Like me, it was a year to diagnosis for her. She'd been told it was 'growing pains' and then it turned out to be arthritis. If it's left too late, the damage to the joints will be done. Another reason that I'm glad that at least Miss T has had early diagnosis and early referral to Great Ormond street for treatment.
And I decided that it is about time for parents, doctors, nurses, health visitors, schools, in fact everyone, needs to realise that people can get arthritis at any age. Children can get arthritis. Even 2 year olds can get arthritis. So I hit publish.
----------------------------
A few more notes on arthritis:
In Miss T's case, she has had swollen joints, with multiple joints affected and affected joints feeling hot to the touch. but this is not always the case. When my arthritis started at age 10, there was no swelling and nothing visible to see.
Although blood tests can be done to look for inflammatory markers etc. sometimes these blood tests come back negative and still the person can have arthritis.
The incidence of arthritis in children is 1 in 10,000 so a lot of people (including medics) think it is so rare that it is unlikely to be arthritis. PLEASE PLEASE consider whether a child could have arthritis as early diagnosis and early treatment is key to preventing irreparable joint damage.
These are just our experiences of Juvenile Arthritis and this is not medical advice so please consult your doctor if you have any concerns.
Information about Arthritis and JIA (Juvenile Idiopathic Arthritis) can be found at Juvenile Arthritis Research and for clinicians and medics at http://www.pmmonline.org/
-----------------------
I have switched off comments for this post - I know lots of people wanted to wish Miss T well after my last post about her foot where I switched comments off but I don't want sympathy - I just want people to know that arthritis is not an old people's disease. Thanks for understanding.
In many ways a relief that it is nothing worse, but at the same time a feeling of sadness that she is only 2 and she's having to go through this.
Without the strong anti-inflammatories and pain relief medication she is currently unable to walk. So I find myself thankful that the meds are working and enabling her to walk (and even run around sometimes!) but I hate the fact that she is taking stuff so strong that I get third degree questioning each time I pick up her medicine from the pharmacy with them reminding me that it is unlicensed for children and asking what exactly is wrong with her to be taking such strong medication. I hate that she is having to take additional medication to protect her stomach because her meds are so strong. I hate that I have to give her sweets for breakfast to help her take her medicine because it tastes so yucky.
And I know this is just the tip of the iceberg. The treatment options are worse. The side-effects can be horrendous. She's in for a tough few years.
I wrote most of this up a couple of days ago but couldn't bring myself to hit publish. The blog is my happy place, where I escape to, where we store happy memories to look back on.
But then yesterday I heard of another little girl. Like me, it was a year to diagnosis for her. She'd been told it was 'growing pains' and then it turned out to be arthritis. If it's left too late, the damage to the joints will be done. Another reason that I'm glad that at least Miss T has had early diagnosis and early referral to Great Ormond street for treatment.
And I decided that it is about time for parents, doctors, nurses, health visitors, schools, in fact everyone, needs to realise that people can get arthritis at any age. Children can get arthritis. Even 2 year olds can get arthritis. So I hit publish.
 |
| A happy photo of Miss T - although arthritis will affect her life, we are determined not to let her life to be defined by it |
----------------------------
A few more notes on arthritis:
In Miss T's case, she has had swollen joints, with multiple joints affected and affected joints feeling hot to the touch. but this is not always the case. When my arthritis started at age 10, there was no swelling and nothing visible to see.
Although blood tests can be done to look for inflammatory markers etc. sometimes these blood tests come back negative and still the person can have arthritis.
The incidence of arthritis in children is 1 in 10,000 so a lot of people (including medics) think it is so rare that it is unlikely to be arthritis. PLEASE PLEASE consider whether a child could have arthritis as early diagnosis and early treatment is key to preventing irreparable joint damage.
These are just our experiences of Juvenile Arthritis and this is not medical advice so please consult your doctor if you have any concerns.
Information about Arthritis and JIA (Juvenile Idiopathic Arthritis) can be found at Juvenile Arthritis Research and for clinicians and medics at http://www.pmmonline.org/
-----------------------
I have switched off comments for this post - I know lots of people wanted to wish Miss T well after my last post about her foot where I switched comments off but I don't want sympathy - I just want people to know that arthritis is not an old people's disease. Thanks for understanding.
No comments:
New comments are not allowed.