8 old year diagnosed with type 1 on Saturday at UCLH, now because he is not from the local area he is being discharged tomorrow. His control is still bad and has no long term care. I have refused the local hospital because they are under special measures with no funding for pumps. I am really stuck and panicking. Can someone help!
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HELP! Newly diagnosed 8 year old type 1
- Thread starter Ibz
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Thebearcametoo
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- Relationship to Diabetes
- Parent
Call your GP first thing tomorrow and talk through what options there are for a diabetes team. If the local one is in special measures then maybe a neighbouring one will be better.
When you say his control is still bad what do you mean? It’s very common to not bring levels down quickly as that can actually make people feel really ill. Presumably he will only be discharged if he is being treated with insulin and you should have discharge instructions for his immediate care.
A pump is likely to take a bit of time (probably months) whichever trust you go with so it may be easier in the short term to go with the local trust and switch care in a couple of weeks so you’re not without support.
When you say his control is still bad what do you mean? It’s very common to not bring levels down quickly as that can actually make people feel really ill. Presumably he will only be discharged if he is being treated with insulin and you should have discharge instructions for his immediate care.
A pump is likely to take a bit of time (probably months) whichever trust you go with so it may be easier in the short term to go with the local trust and switch care in a couple of weeks so you’re not without support.
Pumper_Sue
Well-Known Member
- Relationship to Diabetes
- Type 1
Hello and welcome to the forum.
You are allowed to ask for a referral to any hospital you want, so pick a hospital and get your GP to refer you.
There is funding for pumps, so take no notice of who ever told you that. It might be a case there are no staff to do the training, which is obviously a different matter.
Just because a hospital is in special measures doesn't mean the children's dept is. So give it a go until you or your GP sorts something else out.
A pump is not just given out either, there's a lot of work involved in setting it up, learning to carb count etc,. It can take many months before one is given and that's only if needed.
What are my options for tomorrow? It seems like 5 days for a newly diagnosed diabetic seems rather short. He still looks very poorly.
Sally71
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- Relationship to Diabetes
- Parent
My daughter was only in hospital 3 days. They only need to keep them in long enough to get them stabilised on insulin and make sure you know how to do finger pricking and injections. It will take a while for his body to rebuild itself after the assault of impending diabetes, he doesn’t need to be in hospital for that though. He’ll probably be starving for a few weeks while his body rebuilds itself, it may also take time for insulin doses to be adjusted correctly and blood sugars to come right down. Dropping them down too quickly would make him feel awful and potentially cause other problems.
For tomorrow presumably you have been given some basic information on finger pricking and injections, just do that but get in touch with your GP quickly for a referral to a diabetes team for ongoing support. You may not be able to be too choosy at the moment, just get him some help from somewhere and if it doesn’t seem to be working out after a while then you can think about possibly transferring somewhere else.
For tomorrow presumably you have been given some basic information on finger pricking and injections, just do that but get in touch with your GP quickly for a referral to a diabetes team for ongoing support. You may not be able to be too choosy at the moment, just get him some help from somewhere and if it doesn’t seem to be working out after a while then you can think about possibly transferring somewhere else.
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
Phone your GP as soon as you can so that you can get a local consultant-led team. You’ll also need to get his insulin and strips, etc, on prescription.
You can also phone the Diabetes U.K. Careline on the number at the top of this page. I also recommend getting this great book for Type 1s:
Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas
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gll
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- Type 2
- Pronouns
- She/Her
I'm glad you have your boy home and now I understand that all you want to do is protect him and make sure he is safe.
We have different medical drama going on (not D related) and I found I had to stop and remind myself to give myself a second to appreciate that in all the fighting to advocate for my child, sometimes she just needed mumma and mumma hugs for a minute (which was exactly what I needed too without realising it).
Did it stop me having to keep fighting to get anywhere? nope. Did it help me and my child? absolutely
Shes 21 now and I'm still fighting for her. Doesn't end when they grow up either.
Sounds like you have some calls to make this afternoon to arrange some bits but in it all don't forget to stop and take a minute.
Folks here have your back and support isn't just for questions about him and his diabetes care. Support can be for you too as his parent. If you need to yell how unfair it all is too and how you are stressed out, go for it. Lets face it, a D diagnosis rarely only affects the one family member who has it.
Good luck this afternoon x
We have different medical drama going on (not D related) and I found I had to stop and remind myself to give myself a second to appreciate that in all the fighting to advocate for my child, sometimes she just needed mumma and mumma hugs for a minute (which was exactly what I needed too without realising it).
Did it stop me having to keep fighting to get anywhere? nope. Did it help me and my child? absolutely
Shes 21 now and I'm still fighting for her. Doesn't end when they grow up either.
Sounds like you have some calls to make this afternoon to arrange some bits but in it all don't forget to stop and take a minute.
Folks here have your back and support isn't just for questions about him and his diabetes care. Support can be for you too as his parent. If you need to yell how unfair it all is too and how you are stressed out, go for it. Lets face it, a D diagnosis rarely only affects the one family member who has it.
Good luck this afternoon x
Thebearcametoo
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- Relationship to Diabetes
- Parent
Don’t wait over the weekend. Speak to your GP today. Even if nothing it resolved today (it’s unlikely to be) the motions need to be set in place today. You have insulin, which is the main thing but there needs to be ongoing support. It’s hard enough dealing with a new diagnosis without being left to fend for yourself. If you have any concerns over the next few days call the children’s ward (even if it’s the middle of the night) and you can access immediate support that way.
Thebearcametoo
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- Parent
- Status