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Mum to 16month old newly diagnosed with type 1.

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Ailsa d mumto 5

Ailsa d mumto 5

New Member
Relationship to Diabetes
Parent of person with diabetes
Hey I'm new, daughter diagnosed after DKA on wed. Still in hospital and have absolute fear of going home and this being in my hands. Also returning to work, the thought fills me with dread. Has anyone felt it best to leave work?
 
Ailsa d mumto 5 said:
Hey I'm new, daughter diagnosed after DKA on wed. Still in hospital and have absolute fear of going home and this being in my hands. Also returning to work, the thought fills me with dread. Has anyone felt it best to leave work?
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My goodness Ailsa, I am sorry to hear this :( Welcome to our forum 🙂 How is she doing now? Try not to worry (far easier said than done, I know), but she is in safe hands now, and you will have a team of very experienced people to help you, who will be on hand at all times, once you get her home. How did she come to be diagnosed?

I would highly recommend getting a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas, which is a very good guide to all aspects of living with Type 1, and written in a very positive, easily accessible style. Also, if you have ANY questions at all, please ask us here, there are loads of really friendly, knowledgeable people who know exactly how you are feeling right now. There is a lot to take in to begin with, but there is a lot of help and support too, so please don't every feel you are alone with this 🙂

For a parent's perspective, I would suggest reading Adrienne's essential guide for parents of newly-diagnosed children - Adrienne's daughter was diagnosed almost at birth, but she has grown up into a very healthy and confident young woman. This will not stop your daughter from achieving anything she sets her mind to - there are highly successful people in all walks of life who also happen to have Type 1 diabetes. It requires planning and a bit of forethought, but it is manageable 🙂

Let us know how things are going and hopefully by the time you are home you will feel more reassured 🙂
 
Hi and welcome. You will have so many feelings right now. Take some time to get your confidence in managing her diabetes. Your team will support you lots in the first few months and are always there for questions. They will help with brining your childcare up to speed and teach them how to manage her diabetes too. In the first few weeks it does take a lot of brainpower to manage everything and you would probably not be working at full speed if you go straight back to work but it depends on the type of work you do and how understanding they are as to how much time you’ll be able to take off. If you have am HR department then speak to them about it.

After 3 months diagnosed she will be eligible for DLA and at that stage things like carers allowance would also be available if you aren’t working but once you have everything set up it’s just part of daily life and many parents work whilst caring for a T1 child. I wouldn’t make any decisions about work right now while you’re dealing with the shock of diagnosis.
 
Hi Alisa and welcome. Sorry to hear of your daughter’s diagnosis. How is she doing?

There is so much to take in at the start, but you will have a team around you who will there for you, and will gradually help you get your new ‘normal’ life in place. It really does gets easier, but I know that that must seem hard to believe at the moment.

Rather than rush into making decisions about work at this stage, contact HR and take time to get things settled.

Keep in touch and let us know how you get on.
 
Hello Alisa welcome to the forum, I`m so sorry for you and your daughter but glad you found the forum. Very experienced members and parents in the forum, also your Diabetic team will be there for you, the positive side to the forum is its 24/7 so come onboard anytime you like and ask anything you like. Other prominent members have already given you good advice so no need for me to repeat it, take care of yourself and your lovely daughter, Kindest regards.
 
Hi Alisa

I don’t blame you for being concerned about returning home. You have been thrust into a lot of change very quickly and it is daunting when it is time to leave the security of the hospital ward. Please try not to worry, though. I assume you are receiving training form the nurses while you are in hospital. You will remember more than you think and will certainly cope better than you think you will. Every day, you will be more knowledgeable and experienced than the day before, even if you don’t realise it.

When your daughter does return home, the hospital team are always available on the end of the phone. You will find a lot of advice here and there are many Facebook groups, too, so you are never alone, even in the early hours of the morning.

Your daughter is very, very young, which is probably adding to your concerns. Other children have been diagnosed at a similar age and their parents have coped. Believe in yourself because you will too.

Good luck.
 
Thank you for all being so kind. She was diagnosed on Wednesday after a DKA?? She was taken from docs to hospital with suspected respitory infection, from hospital it was all go go go. I love my job but right now I cant imagine being able to leave her. She is one of 5 and the youngest. I will speak to my work, I do know I will prob see it completely different in a few months but just now I feel how unfair for her and no idea how we will thrive.
 
Good morning Ailsa, it is understandable that you find it hard to see beyond what you are having to manage at present. But she will be fine once the insulin doses are sorted out, which takes time. I am not saying it is easy, but it it is manageable. Life just requires more planning, and your daughter will know nothing different as she grows up.

The developments in treatments with new technologies available are exciting too, and improving things all the time and making things easier for us.

It is a lot to take on board. Keep in touch, keep asking questions, or just come here for a rant.
All is welcome in here.
 
Hello @Ailsa d mumto 5

So sorry to hear about your daughter. Completely understandable that you are reeling at the moment.

You’ve had some great suggestions so far, so I just wanted to add some reassurance. It’s completely natural that you are worried right now, but diabetes is a very manageable condition.

Whether you need to change or adjust your working arrangements is probably a question for a little further on when you have had a chance to find your feet a little and begun to adjust to the diagnosis.

We have a range of working parents and stay-at-home parents here, so different options suit different families.

Hopefully your employer will be flexible and give you a little breathing space while you decide on what’s best for you and your family.
 
I’m afraid I can’t help too much in respect of the work side of things because my wife was already a stay-at-home mum when our daughter was diagnosed. You are right, you will see things differently when life settles down a bit. If you do decide you want to stay at home, is your job something you could do from home – at least some of the time? Do you have transferrable skills you could use if you set up your own business?

Hope might be in short supply now in respect of life in general at the moment, but I promise you will see reasons for optimism when the shock subsides.
 
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