Sickle Cell Society
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Both daughters have Crisis for the 1st time within 2 weeks

I am currently in the hospital for the first time with my 8yr old daughter after being here with my 3yr old daughter for the first time 2 wks ago. They both have SC and have never ever had a crisis. Apparently there has been a virus going around called 'slapped cheek'??? This has been the worst experience of my whole life, I have my own long term health issues and mobility problems. Can anyone advise on their experience in....

*children's hospitals

*pain relief options in hospital

*DLA Applications

*Pain relief at home

*Dealing with schools and nursery

*Support available

Feeling a bit desperate here, their father is not in the country (immigration) so doing this alone and am completely exhausted and in an incredible amount of pain myself.

Any advise and encouragement greatly appreciated.

5 Replies
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Hello which part of the country do you live in? Do you have a local SC centre close to you? I have an 8yr old with SS who is currently also in hospital. I will be more than happy to share my experience and advice on where best to get support.

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Hi there, I live in Bristol. We do have a Sickle Cell centre here actually I'm gonna call them. Can I ask if the paramedics if called gave oxygen or pain relief or only at A&E? I wasn't particularly pleased with how paramedics handled my daughter to be honest. Though the children's ward here in Bristol is very nice, our only challenge has been, being on a shared ward and requesting air conditioning to be turned off and having to explain why 😑

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Yes a good starting point would be to call the SC centre and they would be able to offer some support. With the experience I have had with my son the paramedics don't usually give oxygen unless he is struggling to breathe and with pain relief anything stronger is administered in a&e. Being in an area that doesn't have many admissions for crises would be a little challenging until the staff have had more incidents and training for patients with sickle cell. The SC centres are usually fantastic in offering support and coming to the hospital and even schools to help educate them with symptoms and care for children with sickle cell disease. Hope your local SC centre offers support. Let me know if you need any other advice. I could find out from the team here the best hospital local to you who treat patients with SCD. And I pray your daughter feels much better soon

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I forgot to add. I usually use regular analgesics at home i.e. Paracetamol and ibuprofen however when these are not working I take him into emergency and he is started off on oral morphine then PCA morphine if the oral morph doesn't keep him comfortable. I must say this last crises has been quite bad so we have had to use Fentanyl along with the morphine but I am sure the paediatricians would be able to offer some suggestions. My son has had quite a few painful crises so he had needed the stronger pain killers which may not necessarily be what your daughter will need. Good luck but please let me know how it goes.

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Thank you this was very helpful 😊

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