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Parent of new Type 1: 2 days home from hospital

R

Rorysmum

Member
Messages
21
Treatment type
Insulin
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 @Rorysmum
welcome to the forum -- although you don't really want to be here and I don't blame you

there is a load of great people here that can help in your early days of getting to grips with this.

first advice -- remember that it is a marathon -- not a sprint -- don't try to solve everything all at once...........

am tagging some lovely people I know to come along and say hello

@mahola , @1Sarah1 , @azure , @Ellie's mum
 
Talk to your DSN, and ask them to go into school and instruct them on what they can do and how to help. I'm 16 and was diagnosed 3 months ago just before going away to college. My levels were awful to start with, and are only just starting to stabilise but my DSN are still changing things! My DSN had to speak to the college nurse about things and how to help with me, so thats what could happen.
 
Thanks. She went into school yesterday to show them. They have identified 6 people who will be able to inject him so school trips etc are covered. They want me to go in for a few weeks till they are all up to speed.
 
First off. Welcome and you need to relax and try to calm down anxiety you have. Your son will be ok, is ok. Now he needs a nice calm parent to guide him and not to alarm him or cause him anxiety. Children cope. Its harder but we do.

Talk to your DSN about trialling a Freestyle Libre or a new Medtronic Guardian Sensor.
This doesn't have to be done immediately but either one of these two things mentioned will help parents. The new guardian sensor, the parent can lig in from a phone to see blood levels.. saves getting out of bed and stabbing fingers!! They only came out yesterday and would only be on a trial basis and afterwards (currently) unless excpetional circumstances the patients have to pay for them.

Your son does not have to eat a special diet. It is nice to be able to keep to a nit of consistency for a while but the most important thing for parents and children to learn is to carb count and adjust insulin accurately. Get a carbs n cals book initially. It is important not to disrupt your childs life by changing his food enormously because of diabetes-unless he really was eating utter rubbish..... he needs to feel that life is still fun and manageable and he can still eat and enjoy himself providing he tests n injects first.

School instruction is imperative....

Parents will always treat diabetic children differently. We aren't though besides needing that test and injection. We need normality and to be guided to fit in and to be the same as others because we are being forced to feel different when we are so wanting to be the same as our friends.

The watching over from a parent is obviously tremendously hard but the Freestyle Libre is a help but the Medtronic Guardian Sensor could be a great step forward for parents to be more able to show less worries to the children and to enable the children to feel less 'different'.
 
Hi @Rorysmum

What you're feeling is totally normal. The first weeks of Type 1 are hard, both practically and emotionally. There are two good books you might want to look at - Think Like A Pancreas and Type 1 Diabetes in Children and Young Adults.

The first titke there is basically what you have to do - take over the job of your son's pancreas. That sounds hard but it does get easier once you've got a grip on what you're doing and how Type 1 works.

Before I deveoped Type 1, I assumed that you took your insulin and that was it, but it's a little more tricky because you have to learn to adjust your doses according to what your son is about to eat, etc. You and your son will gradually learn what works and how to do that.

My advice is to use your DSN for support and avoid the numerous blogs and Facebook pages that play on parents' fears. Your son can eat relatively normally with a little thought and if he's hungry then your team should be able to advise whether he needs insulin for his snacks. It's normal to be very hungry shortly after diagnosis. His body will have been starved so it wants to 'rebuild itself'.

Make sure his school draws up a Care Plan for him and that you're confident they have adequate support in place for him.

He'll be ok Type 1 is a shock at first, but it can be worked into his life and he can still do everything he did before in time
 
Carbs are carbohydrates.Carbohydrates are the component in some foods that drive the blood sugar up the most. Growing children need them everyday but carbohydrates are also the thing that will bring low blood sugar up. You probably already have a favorite snack to treat lows. Good job for helping your son deal with his diabetes and lead a normal life-it definitely can be done. I am 57 years old now but used to get excused from Physical education classes because they caused lows for me-we know to test before exercise now and have a small snack with carbohydrates beforehand but it wasn't so well understood then. Good job again and know that it gets easier as you get used to it and learn more.
 
I loved being excused from
Physical Activity!!! -lol... but nowadays.... it should not be necessary.

The only thing you may ned to think about on a long term basis is jobs.. there ate still some jobs that are mot easy for diabetics to get... however our Prime Minister is T1 so let your son know that!!

Most important thing is really to hide the anxiety and concern from your son. He needs to know life is still normal... he can with a bit more attention do everything as before... and be our PM in a few years!!
 
Thank you
Thank you, lots to look into. I suppose I need a good sleep and calm down as you all say x
 
Life goes on Hun.... you need your time and relaxation and less stress.

My advice only is to show as less stress and worry to son as possible.... keep him feeling normal.

You can find out things whilst he at school, when he out, in bed etc...its your first xmas as "diabetes" family... but you need to be able to make it as normal as possible. If son wants xmas cake, xmas pud etc... he should be able to have it.... you have to find the way to do the caring calmly and allowing him some normality without mentioning the diabetes word, testing, injection etc...

A lot to take on!! You'll do it...
 
Ellie has been diagnosed for 9 months so we're still quite new to it all compared to some.

I use to spend night after night reading up on things and to be honest it didn't do me any favours, it just sent my head round in circles.

Ellie was always hungry in between meals and we found that cheese and cucumber soon became her 'free snacks'. Her snacking has calmed down over the months, we now have 5 cucumbers a week instead of several a day


We were lucky that school already had 1 diabetic child so they new how to help with injections, blood checks, spotting the signs of hypos etc. Since Ellie was diagnosed 2 more children have been diagnosed. 4 children in 1 school with type 1 diabetes, they certainly keep the medical lady on her toes!

This forum has been amazing for any questions I've had or help I've needed with anything. Feel free to ask any questions you have as I'm sure one of us will be able to help you out

Go easy on yourself and take it one day at a time x
 
Rory loves cucumber. I will do that tomorrow for him. Do you count that as a 10g snack or just not count it at all? I just think if he had a few things in the fridge he could grab without having to worry that would help. I have 4 children so finding a balance for all is stressful.
 
Hi @Rorysmum
@Ellie's mum is saying that her child is able to eat cucumber as a "free" snack ( not injecting ).
Cucumber is very low carb -- it would be best to try it and see what happened to rory 's Bg after a cucumber snack ( by testing )-- that way you will know for sure
 
100g of cucumber is about 1.8 g I think... so definitely a lovely free snack to have.
Depending upon age of child etc some unsalted buts like walnuts can be nice too.

With hypo stoppers it is lively as well to have things that are normally lived but could be restricted...
you will learn this in time. Hospital normally say something like glucose tablets or lucozade. I always will take nice things like my aldis cherry chocolate in preference to anything else. Uf somebody offered me glucose tablets I would definitely not eat but a small banana I would.. etc.
They say certain hypo stoppers because they ate quick to act... but, sometimes its easier to have the child (or adult) take something they like!!

It will get easier. Promise.
 
I wish I found you all when I was awake all night in hospital. Feeling better already with all your messages and support, knowing there are others in the same situation. Thank you all xx
 
Thank you. Was going to put his school hypo kit together tomorrow so have written yours down. x
 

Great advice!!
 
My daughter was diagnosed in Jan aged 5 it's a life change but each day is different and take each day at a time were 11 months in nearly and still learning, life's hard but this is life now so we just deal with each day, am sure ur doing an amazing job just make it part of your life don't let it control it
.
We self fund a libre and it has made a huge difference to our daughters life.
 
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