Parent of new Type 1: 2 days home from hospital

T1Dad

Well-Known Member
Messages
70
Type of diabetes
Parent
Treatment type
I do not have diabetes
4 months in now with a 5 year old...most helpful things we have done so far:

1) Met with other parents/children in the local area with T1D. Really helped my daughter see other kids in the same boat. You can contact your DSN to help with that.
2) Raised money for T1 research. Gave us a sense of togetherness. There's many ways to get involved.
3) Registered on here. You've done that already :)
4) Read the whole 'Think Like a Pancreas Book'
5) Sorted out the Basal Rate. Only got this right about a couple of weeks back after a lot of experimenting and changing doses. Doing this has allowed us to sleep through the whole night as long as the levels are good at bedtime. Phew!!
6) Freestyle Libre

It's a massive life change for the whole family but one which will become part of you all. Don't compromise on any activities that he used to do before diagnosis. It's all possible albeit with some additional help and guidance.
 
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EmmaRW0811

Member
Messages
14
Type of diabetes
Parent
Treatment type
I do not have diabetes
My son will be 10 tomorrow. He was diagnosed three weeks ago. It's been quite a journey for our whole family- one with ups and downs!

First, get sleep. You're unlikely to do anything wrong or get any hypos in that first week. Get rest, take stock and get into the habits of the new routines. There's a lot to organise and learn - from how to get extra supplies for school to how to count carbs. Don't rush, write lists and tick off a few each day. I took quite a lot of time off work (which is now catching up on me with that stress...)

Your son needs it not all to be about diabetes, but if you're like me, your head is spinning with all you're learning about diabetes! This is not easy. I tried to find ways to have normality as often as possible- we went for a walk, we went to the cinema (finding a 15g carb bag of posh popcorn).

I also got him back to school on a Friday afternoon- a short couple of hours that let him be reassured his friends still wanted to play with him without the pressure on us or the school of a whole day or week.

Our school has 4 children with diabetes, but it still wasn't easy as he was doing things differently from the others (who are all on pumps, while he's injecting). The afterschool club got really nervous. In both cases it helped for the hospital nurse to come into school and afterschool club to teach and train them. It seemed to me that there was always one more barrier to prevent the afterschool club taking him and I was exhausted about trying to get all that in place (just as I was trying also to return to work and catch up with having got so behind when I was fully off work)

At your stage I was scared about hypos, so let me say that after three hypos (in his second week) he was already sufficiently aware to tell me when we was having one.

Be gentle with yourself-you're doing better than you think. Sleep, rest and take your time.

Warning also that my son has had several major emotional upsets last week (our third week). It's now fully hit him that this is for life. He was so sensible and matter of fact about it in the beginning... the outbursts have been frightening for me (lots of "my life isn't worth living" and even "if it's autoimmune then it's my own body's fault and I'm punishing myself".). I held him, agreed it was really tough, told him I loved him as he is and I'm with him through this. I didn't try to pretend those emotions were wrong. (After all I've cried too and that's with an adult brain not a little boy's brain - because however mature he can be, underneath he's still a little boy). Those outbursts have been contained and he has got back to getting on with it. But afterwards I'm drained. (I had to cancel a 9:30am meeting after one awful before-school outburst, there was no way I was ready to work ...)

Use the hospital team - the nurse will help you work out doses, the dietician will help with carb counting and I've also had an appointment with the family therapist who is helping me deal with both my son's emotions and some of those underneath family frustrations that have been there for years...

Good luck.
 
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Rorysmum

Member
Messages
21
Treatment type
Insulin
Can't believe how quickly we have got into a routine. He is still having maybe a few hypos a day but the hospital are regularly changing his ratios so fingers crossed he will find a level soon. I think we are in the honeymoon period still.
The school are being good if a bit cautions. I suppose we are all still learning.
Thank you for asking but I feel so much more confident now xx
 
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endocrinegremlin

Well-Known Member
Messages
433
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
People telling me how to control my diabetes. My health. Isms. People walking their dogs off leads in illegal areas. Meat that bleeds. Late buses.
Hi, first, it is great that you came to the forum and with such honesty. That better helps us help you. I was diagnosed at 6 to a mum who had been diabetic since she was 12 while having an aunt who had been diabetic since she was 4....yet they still panicked and had the same thought processes. Yes I agree that you have to try and shield Rory from as much of your stress as possible but it is ok to personally feel it.

The books other recommended are great. I would also ask your DSN about getting on a DAFNE course. This is a week long course (though it can be spread longer) that teaches someone how to count carbs and work ratios. In theory Rory can eat anything he likes. All you need to do is know his ratio and the carbs in what he is eating. I'd stay away from sugary drinks and such but the rest is just learning to manage. Diets are debated on here and different people find different things work but I agree with a previous comment that the less change for Rory is better. Get yourself sorted with a hypo kit for his bag at school. Though teachers and offices can carry things that may be far from him at times and he may not admit to needing them. So keep some fast acting glucose and some long acting carbs on him at all times. Say, glucose tabs/wee carton of fresh orange or a can of sugary juice and a breakfast bar/biscuit on him at all times.

As I said many opinions are on here so make sure you are in touch with your DSN and Dr so everyone knows what you are doing and why. Things will not be perfect for many months because he has just been diagnosed but you will get there. Try and involve him with writing in his book with results and try not to show disappointment at 'bad' numbers. Many teens 'rebel' when it overwhelms them so keeping it as little a deal as possible is vital.

I'd rec googling all the people who have type one. The PM is type one as are famous sports starts!

It is serious and hard and I won't pretend it isn't but someone is always around this forum with answers. The nurses are there most of the time at hospitals. Just know he can do nearly everything and anything. Some jobs are restricted but at his age nothing is beyond his reach.
 

Rorysmum

Member
Messages
21
Treatment type
Insulin
Thank you for that.
We are now all coping so much better. Went Christmas shopping yesterday which was a big outing but he managed fine, it wasn't a problem. Stopped for lunch, worked his meal out and he gave himself the injection, it was a good day. Have our first appointment back at the hospital on Wednesday and I have a list of questions already.
 

wallyk65

Member
Messages
8
Type of diabetes
Type 1
My beautiful 10 year old was rushed by ambulance last week to hospitals. I thought he may have had a urine infection! Diagnosed with Type 1. I have cried solidly every night at his hospital bed while he slept, cried my way through all the meetings and now find myself at home with him not 100% sure of what I'm doing. His blood has been up and down, I have no idea how to look for a pattern. I'm
Driving myself mAd on the internet looking for foods that are going to be good for him. He's a growing boy, hungry all the time. I'm not sure how many snacks he can have a day, I'm up pricking his finger half the night in case he gets in rouble while asleep. He has been strong and is desperate to get back to school. That's another minefield. No one in the school has it, he will be the first. As we are only a week in he can't spot any signs that's he's not well. We've been out to the park etc but nothing like the excitement he will have at school.
Is there any advice anyone can give, are you further down the line than me?

Hi there
Welcome to the forums. Diabetes diagnosis can be daunting and still is nearly 20 years later with our daughter, she was diagnosed type 1 at 16 months old! We made mistakes, didn't get things right, had periods of good control and periods of poor controls but the main thing to remember is that you're not alone!! Parents and diabetic teams have probably been through or seen most situations you can think of and are a great source of help, information and reassurance. Don't be afraid to ask...even if it seems silly or trivial. It can be daunting, frightening even but you'll get there, you'll find what works for you both just remember it takes time and you'll make mistakes.
Our daughter is 21 this year, in her third year away at uni, did all the things kids do growing up including three years of Duke of Edinburgh, sleep overs, school trips, holidays etc
You'll be great and you'll get there :)
 
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Cotcha

Newbie
Messages
4
Type of diabetes
Parent
Treatment type
Pump
Hi there. Just a quick response to really only solidify what everyone else have said.

No-one learns to ride a bike by reading how to do it. It's all about learning on the move. There will be wobbles and bumps and occasionally you may even fall off, but over time you will find the road smoother.

Be patient with yourself and acknowledge that there's only so much you can control. It's been 8 years since our son was diagnosed, but still we find moments when we are overwhelmed. One thing that I would like to add is that of course we need to be cautious of swamping our children with our worries, but do not feel you are doing anything wrong if you have moments when it is just too much. It's healthly to notice and acknowledge how we feel.
 
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