This is just a support post, a place for me to get this out. My daughter has been sick for a while. She’s had chronic tummyaches for 5 years, sometimes with a bit of a temperature, occasionally with a roaring fever and a visit to emergency and an overnight admission. Lately the lethargy and chronic affects have been overwhelming.
I won’t go into details on how we got here as there have been a lot of dismissive doctors along the way (except to say that my daughter thought I sounded very angry when asking the doctor for the scan ), but I finally figured out what we needed was an MRI.
Sadly her MRI shows bone marrow oedema in the sacroiliac joints and bowel wall thickening at the terminal ileum. So likely SpA (spondyloarthritis) and Crohns. She is 11, and loves her dancing /acrobatics (and is really very talented at it too).
I am just so sad. Last week I was at hospital twice for the gastroenterologist and surgeon, this week was her MRI, next week will be my haematology appointment (where hopefully they tell me my pre-cancerous condition has not progressed further and I’ve still got a number of years before nasty treatment), the week after I expect will be her specialist appointment at a different hospital, then she will have a colonoscopy, then I’ll have pre-admission appointment all day, then surgery a week later. Somewhere I have to fit in the follow up to a different (cervical) pre-cancerous removal procedure I had last year. And it’s been going on like this for 18 months. I feel like all she’s ever known is chronic disease.
I see and am grateful for all the many amazingly good things about our situation (clean water is a good start, great medical care, no serious Covid outbreak), but I am getting really worn down trying to parent, work, and manage all this. And just for a day or two, or maybe even just this evening, I’m sad.
I am grateful to have somewhere to write this and feel heard. Thank you all.
I’m sorry. It’s tough enough to deal with either our own medical stuff or our child’s. Dealing with both at once is really hard. It does sound suspiciously like she’s taking after you. I’ve had to deal with health issues with my daughter as well, and I know that usually I wind up putting my own health needs aside while dealing with hers, but that’s not really an option right now.
The good news is that there are treatments out there that can help her live a normal life overall. Getting there is the challenge. Big hugs Jen
Oh Jen the hugest of hugs. You’ve been on my mind and I was hoping things were turning better. Life is challenging enough most of the time and significantly more challenging with chronic illnesses and even more challenging with your child’s suspected illnesses.
But @Stoney is right you know, the outlook for your daughter is even better than the outlook for us.
But of course it is just plain awfully sad. Awfully. So have more hugs. Lots of them as many as you need. xx
Thankyou both @Stoney and @Poo_therapy. I am feeling those warm hugs from here.
Still some sadness, and I’m sure plenty more to come - I’ve still got to have the first conversation with her that they found something.
But if they do diagnose then 4 years of battling what feels like a ghost, and having her feel like it’s in her head will come to an end and hopefully we’ll find an effective treatment quickly.
On a positive note, she really likes the first treatment they usually use for kids - exclusive enteral nutrition (like babies formula but in flavours like chocolate), frozen in icy poles. I was giving her mine when she was sick and she assured me she could live on them for two months
She’ll probably be sick of them after a week, but that’s okay. It’s a good start anyway.
You raised a good point. She clearly knows something is wrong. Putting a name on it and starting some sort of treatment will make a huge difference for her, same as it did for all of us.
Thank you so much Poo, you are really kind. The overwhelming sense of sadness has passed, and things are just bubbling along, appointments taking forever, both of us still sick, but looking forward to a change in that soon.
My daughter took the news really well, her first thought too was maybe if they found something, then they could finally find something to help. After so long she’s pretty cynical, as am I, but it was great that her first thought was that it might be positive.
), but I finally figured out what we needed was an MRI.