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Newly diagnosed with C.R.M.O

Posted By T-turtle

"Newly diagnosed with C.R.M.O"

About: Forth Valley Royal Hospital / Children's Ward Royal Hospital for Children (Glasgow) / Paediatrics

(as the patient),

I started to feel unwell with a sore back, pain and could barely walk , and kept going to the doctors who then sent me to our local hospital FVRH , and they said my results were ok. 

after my 3rd  and 5 months later, a consultant said she thought she knew what was wrong with me and gave me an MRI scan . 

I was then sent to Glasgow sick kids and they told me I had C.R.M.O ( chronic recurrent multifocal osteomyelitis ) a disease where the immune system attacks the bones and causes pain and swelling . I was given lots of x-rays , another MRI scan and a mid line in, and a bone biopsy in my knee.

I was given treatment for this and was in hospital for 20 days .

I was sent home  after treatment, and have been fine for 6 months , but I've had a little bump at school and got a micro fracture in a vertebrae in my spine , then the pain started again, got an MRI scan and  have a new lesion on my spine , so I'm heading back soon for more treatment.   

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Responses

Response from Gail Bell, Deputy Head of Midwifery, Women and Children, NHS Forth Valley 2 years ago
Gail Bell
Deputy Head of Midwifery, Women and Children,
NHS Forth Valley

Submitted on 27/10/2021 at 10:36
Published on Care Opinion at 10:36

Dear T-turtle

Thank you for sharing your journey with us.
Being in hospital is quite frightening for anyone never mind a child but it sounds as if you have been very strong and brave despite your diagnosis.

What a difficult time you have been through and just when things seemed better you have hit another set-back. I hope your treatment works quickly and that you don’t miss too much school and your friends.

With best wishes

Gail

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Response from Coral McGowan, Patient Services Manager, Women & Children's Services, NHS Greater Glasgow and Clyde 2 years ago
Coral McGowan
Patient Services Manager, Women & Children's Services,
NHS Greater Glasgow and Clyde

Submitted on 27/10/2021 at 22:58
Published on Care Opinion at 22:58

picture of Coral McGowan

Hi T-turtle

That's some journey you've been on over the past year and as Gail has said, a really frightening experience. I hope the 20 days you spent with us 6 months ago were okay, and I'm glad you were well enough to return to school.

I was so sorry to learnt your minor bump has caused a fracture which in turn seems to have identified a new lesion so you will be back with us soon. Please do let us know directly if there's anything we can do to make your stay with us as comfortable as possible. Since you were last in, we now have access to Disney Plus via. IPADs, our MediCinema has re-opened and we've got quite a few activities planned around various event days and then Christmas. I'm guessing your Play Assistant is going to be Lauren - whoever it is, make sure and say hi - she will help you whilst you're here getting your essential treatment.

You must be sore, so sending best wishes whilst you're waiting to arrive and I hope we can help you feel better very soon.

Coral

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