Mum of newly diagnosed Type 1, 5 year old

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GBarnett

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Hello,

My daughter was diagnosed with T1 2 weeks ago and we are still coming to terms with it all, and trying to get her back to school. I am glad I have found this forum and am looking forward to reading advice and experiences other families have had. Also never used a forum before so another new experience!
 
GBarnett said:
Hello,

My daughter was diagnosed with T1 2 weeks ago and we are still coming to terms with it all, and trying to get her back to school. I am glad I have found this forum and am looking forward to reading advice and experiences other families have had. Also never used a forum before so another new experience!
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Hello and welcome. I don't have a child with type 1 but my granddaughter was diagnosed with type 1 at 2 1/2 yrs, so I know how you and your family must be feeling, I was in a bit of a state, but I received so much support and kindness from other members on here, as I'm sure you will too 🙂

With best wishes

Sheena
 
Thank you, it's good to know we are not alone. I hope you granddaughter is doing well.
 
Hi Gillian welcome to the forum, though very sorry about your daughter's dx.


My daughter has recently turned 5 and started reception in September. She has been up and running with her insulin pump for just over 3 years. I suppose having her diagnosed so young we didn't have the school element to consider but we did lose her childminder which was an additional strain at the time.
She has settled into school fine and has support to assist with her BG's, pump and keep a general eye on her especially with eating and activity.

How is your daughter coping with the changes? Is she ok with her finger pricking and injections so far?

Regarding coming to terms with it, it is very hard but you do get into a new way of doing things in your own good time. It can be sad and frustrating and lonely at times but you have done well finding this forum so soon, there are lots of supportive people here as and when you need it. Tc 🙂🙂
 
Hello Gillian and welcome to the forum.
 
Hi Gillian and welcome 🙂

Sorry to hear about your daughter's diagnosis. My son was diagnosed aged 4, in the summer holidays between Nursery and Reception - absolutely turned our world upside down. It does get easier though! He is nearly 13 now.

What insulin regimen is your daughter on? Are your hospital team providing training for school staff? Your DSN should be able to help you draw up a health care plan to support your daughter in school. I would highly recommend you buy the book "Type 1 Diabetes in Children, Adolescents and Young People" by Ragnar Hanas - this is a superb reference book, really easy to read and full of positive vibes! It was extremely useful to me in those early days, and I still dip into it occasionally 🙂
 
GBarnett said:
Hello,

My daughter was diagnosed with T1 2 weeks ago and we are still coming to terms with it all, and trying to get her back to school. I am glad I have found this forum and am looking forward to reading advice and experiences other families have had. Also never used a forum before so another new experience!
Click to expand...

Hi, and welcome to the forum 🙂 I'm very sorry to hear about your daughter's diagnosis. What insulin regime is she on? I would suggest having a read of Adrienne's essential guide for parents of newly diagnosed children. There is an awful lot to take in at first, but try not to become overwhelmed. As Redkite suggests, Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas is an indispensable reference guide for all people with Type 1, covering all aspects in a very accessible and readable style, so do get hold of a copy! 🙂 There are links to other good resources in our Useful links thread.

Please feel free to ask any and every question you may have - nothing is considered 'silly', and we will do our best to help out! Please be encouraged that her diagnosis will not hold her back, treatments today are very effective and it does not need to stop her from doing anything she wants - it might just take a bit of extra planning 🙂

p.s. If you have any problems or questions about using the forum, please let me know by using the 'Contact' link at the top of the screen. You can't break anything, so just go ahead and post your thoughts, questions and concerns 🙂
 
Thank you.

Thank you so much for your replies, your stories are a big help.

Hayley is coping brilliantly with it all, very proud. We are on a MDI approach just now, 2 Levemir morning and night and 3 Novorapid injections before meals. Her BG is up and down just now, especially with the least exercise, such as 10 min walk to school, and feeling like I am packing her full of snacks to sustain her for all activity. Just reduced carbs to 30 to 40 g at mealtimes as she was struggling to eat everything.

I definitely want to look at CGM and pump therapy and have been told we are eligible, but need to get an established routine with MDI for a couple of months before going on the list.

I am getting up 2 to 3 times a night to check her BG as she peaks at 11 or 12 around midnight then drops to 5 or 6 by morning. From other posts, it looks like night time checks are part of the process, although our DNS said we dont need to. Just trying to muddle along the best we can and stop crying so much! I know it will get better but it feels a long way off just now, with a few hypos in school last week, down to 2.7 BG which was scary. I am staying in school again with her this week to help monitor and train staff. Have other parents done this as well?
 
Yes, I went into my daughters pre-school nursery when she was first starting (which is integrated with her reception now) and was in school again last week, which had been planned for a while, as there was lack of trained cover due to staff changes.
I recall after dx it took a few weeks for levels to settle down and be more stable. It's worthwhile checking her through the night whilst her levels are unstable, hopefully you may be able to drop it down to just one check soon as it is exhausting.
 
Gill, has your DSN introduced you to carb counting? This means you would adjust the novorapid dose depending on the amount of carbs eaten, so you don't have to make her eat a fixed amount.
 
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