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5 yr old newly diagnosed

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nic&kit

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Relationship to Diabetes
Parent of person with diabetes
Hi
I’m mum to Kit who was diagnosed with type 1 diabetes just 6 days ago. Wanted to sign up to hear how other parents cope and any tips, advice, sanity checks! It’s all still quite raw for us and not sure it’s sunk in yet, but any advice/guidance much appreciated.
Many thanks
 
nic&kit said:
Hi
I’m mum to Kit who was diagnosed with type 1 diabetes just 6 days ago. Wanted to sign up to hear how other parents cope and any tips, advice, sanity checks! It’s all still quite raw for us and not sure it’s sunk in yet, but any advice/guidance much appreciated.
Many thanks
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Hi @nic&kit, welcome to the forum 🙂 So sorry to hear about your little one's diagnosis :( How did it come about? The first thing I would say is, don't panic! There is an awful lot to take in very quickly, especially when a child is involved, but things WILL get easier. You will learn something new every day, and hopefully you are getting good support from your healthcare team, but I would highly recommend getting a good source of information that you can refer to as and when you want. Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas is the best guide and reference to all aspects of living with Type 1, and is written in a very accessible and positive way, so I would urge you to get a copy if you haven't already done so 🙂 (I think all newly-diagnosed should get a copy from the NHS!)

How have things been so far for you? Do you mind me asking how old the child is? Any brothers or sisters? There is a wealth of knowledge and support here, not just from parents, but also from people who have grown up with Type 1, so can speak from their own personal experiences - there's nothing you can ask that someone won't know the answer to, so whatever concerns you may have, please let us know and we will be happy to help 🙂

I imagine you are feeling a bit fraught too, so I would suggest having a read of Adrienne's essential guide for parents of newly-diagnosed children, which I hope you will find helpful 🙂

You might also like to get a 'KIDSAC' full of information from the charity JDRF, which includes a Rufus bear 🙂 Finally, if you are on Facebook, there is an excellent group Parents of Children With Type 1 Diabetes In The UK

Please let us know how you are getting on 🙂
 
@nic&kit sorry to hear this, good place to come and read posts and ask questions. Lots of supportive members and experienced/knowledgeable diabetics. This is one of the best places you could have found and why the NHS recommend DUK.
Be gentle on yourself - emotionally it will take some time for you all and welcome to the forum.
 
Hi Nic. You will be overwhelmed to begin with. Are you getting good support from your diabetes nurse (DSN) and team? In the first week of my daughter being diagnosed we’d seen the DSN twice and also seen the dietician who had gone through carb counting with us. We were given out of hours contacts and told we could call the local children’s ward if it was outside the times the diabetes team covered. We used both lots to begin with.

Diabetes seems really scary when you’re new to it but one thing I realised after the first few weeks was that get the dosage wrong on one injection you can just sort it out afterwards. It’s very responsive to correcting doses either with more insulin or more carbs.

The first hypo you deal with will be terrifying. Hold your nerve and don’t be scared to call an ambulance if you need to (but you won’t need to unless it’s a really low one, I’ve never had to call them yet but I was so scared with that first one). Once you’ve dealt with a few hypos and get to know how your child recovers then it gets easier. In the first few weeks you may find hypos aren’t a problem as they tend to bring the levels down fairly slowly.

We’re here to support you and answer questions but do lean on your diabetes team too.
 
So sorry to hear about Kit’s diagnosis @nic&kit, but pleased you have found the forum.

As others have said, it is quite natural to feel worried and overwhelmed by this change in your circumstances, and questions can pop into your head at any time - hopefully you are getting good support from your clinic and are in regular contact, but do feel free to ask any questions on the boards here (or just have a good old rant and moan to clear your head)

Diabetes can be fickle, frustration and very annoying to live with, but it IS a long term condition that can be managed, and there are ever more advanced tech, gadgets, monitors and insulins that make effective management more possible (dare I say easier?) than ever.

There are many members here with decades of T1 under their belt and very little to show for it except an increased sense of empathy, an ability to multi task and better mental maths skills 🙂
 
Thank you to all who have replied an for your kind words and advice. My son is 5 and went back to school today, just for a half day but its a step forward to him getting back into some form of routine. Its still early days for us and both my husband and I work but my employer has been understanding and given me this week off.I just wondered if any of you had taken parental leave as there is no way I can go back to working (normally 4 days a week) with my son's sugars still up in the air and school is not quite there yet and tbh neither am I mentally or emotionally. His diagnosis came entirely out of the blue, with the only symptoms drinking water excessively and increased toilet visits. He didn't feel unwell, have a temperature or any tummy pains. I basically took him to the Dr's as I felt he wasn't right and he was rushed to a&e. It would be good to hear of anyone's experiences with work, I'm pretty sure I'm entitled to parental leave but wanted to get as much info before asking my employer. I work for a charity so there is no HR to ask! I have 2 other older children aged 7 and 9, so this is a huge adjustment to us all but they've been really good so far and are getting used to their little brothers injections.

The diabetic team are great but realise they are thinly spread so do feel we are learning on our feet like everyone on here I imagine?! Thanks again for your help and I will order that book you suggested too.
 
nic&kit said:
Thank you to all who have replied an for your kind words and advice. My son is 5 and went back to school today, just for a half day but its a step forward to him getting back into some form of routine. Its still early days for us and both my husband and I work but my employer has been understanding and given me this week off.I just wondered if any of you had taken parental leave as there is no way I can go back to working (normally 4 days a week) with my son's sugars still up in the air and school is not quite there yet and tbh neither am I mentally or emotionally. His diagnosis came entirely out of the blue, with the only symptoms drinking water excessively and increased toilet visits. He didn't feel unwell, have a temperature or any tummy pains. I basically took him to the Dr's as I felt he wasn't right and he was rushed to a&e. It would be good to hear of anyone's experiences with work, I'm pretty sure I'm entitled to parental leave but wanted to get as much info before asking my employer. I work for a charity so there is no HR to ask! I have 2 other older children aged 7 and 9, so this is a huge adjustment to us all but they've been really good so far and are getting used to their little brothers injections.

The diabetic team are great but realise they are thinly spread so do feel we are learning on our feet like everyone on here I imagine?! Thanks again for your help and I will order that book you suggested too.
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I wonder what information Diabetes UK can provide to help with the work aspect? I'll tag @Josh DUK , @Gwen Diabetes UK and @Robert Diabetes UK so they see this 🙂

The book is a really handy reference, and will also help you formulate any questions you may have for your team 🙂
 
I can’t really help with work as I work from home but I would say that the first few weeks are a head scramble but then you will hit yourself groove so when talking to work you can think in terms of a couple more weeks off and thinking if you can work from home or adjust your hours for a further couple of weeks. It doesn’t have to be a long time.

It’s normal for his glucose levels to still be higher than target so don’t worry too much about that at the moment. His body has been used to them being high and bringing them down too quickly can be a difficult adjustment. In the next week or so you will get them nearer to target though.

Have you been taught carb counting etc? It does take a couple of weeks to get in the groove of it all.
 
nic&kit said:
Hi
I’m mum to Kit who was diagnosed with type 1 diabetes just 6 days ago. Wanted to sign up to hear how other parents cope and any tips, advice, sanity checks! It’s all still quite raw for us and not sure it’s sunk in yet, but any advice/guidance much appreciated.
Many thanks
Click to expand...
Hi there, welcome to the forum! The Diabetes UK advocacy service can give you some advice and information about taking some time off work. If you'd like to get in touch feel free to get in touch on 0345 123 2399 Mon-Fri, 9am-6pm. We also have a helpline service you can contact for advice about diabetes, so if you have any questions please do get in touch with us on the same number 🙂
 
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