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Daughter Age 22 newly diagnosed Type 1 after very bad DKA

mimi73

Member
Messages
8
Type of diabetes
Parent
Treatment type
Insulin
My daughter was just diagnosed 3 weeks ago afeter a very bad DKA and a week in hospital , 5 days in intensive care.
it was a shock for her and the family, so much to take in at once and it is very overwhelming.
My daughter moved abroad 3 years a go and I am in the Uk which makes it even harder, I am very worried about lows at night.
She lives with 2 flat mates who are also young and out alot, my daughter seems to be coping ok, she is a bit stressed but i am worried she may get depressed.
Anyone there who can give me some tips on managing this? also xmas is coming up and I was wondering what foods are good...we always used to tuck into a box of chocolates and lots of treats at xmas, i want to make sure i am doing it right xx thanks , it's my first time on a forum!
 
Hi Mimi, Sorry to here about your daughter, but you have come to the right place for help, but I also think that you should send her the link as this is very international and getting anything second hand isn't always the best.
You dont say what she has been diagnosed with either Type 2 or 1.
There is a lot of people on this site that will answer both yours and your daughter questions. @daisy1 should be along soon with a long list of information which would need to be passed on to your daughter.
Keep looking round the forum, contact your daughter with a link and get her to introduce herself here......
 
Last edited by a moderator:

Sorry Mimi, I have just seen in the title you have put Type 1, there are lots that are type 1 here and I'm sure many will be along to help you I am type2 so just not qualified to answer your questions.
 

Hello Mimi and welcome to the forum

Here is the information @daddys1 referred to in his post. Some of this information will not apply to your daughter since she is abroad. Which country does she live in now?

BASIC INFORMATION FOR NEWLY DIAGNOSED DIABETICS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you’ll find over 100,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.
There are two approaches to controlling your carbs:

  • Reduce your carbohydrate intake
  • Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

Another option is to replace ‘white carbohydrates’ (such as white bread, white rice, white flour etc) with whole grain varieties. The idea behind having whole grain varieties is that the carbohydrates get broken down slower than the white varieties –and these are said to have a lower glycaemic index.
http://www.diabetes.co.uk/food/diabetes-and-whole-grains.html

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes
  • Before meals: 4 to 7 mmol/l
  • 2 hours after meals: under 8.5 mmol/l
Blood glucose ranges for type 1 diabetes (adults)
  • Before meals: 4 to 7 mmol/l
  • 2 hours after meals: under 9 mmol/l
Blood glucose ranges for type 1 diabetes (children)
  • Before meals: 4 to 8 mmol/l
  • 2 hours after meals: under 10 mmol/l
However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

  • structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
  • self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to bloodglucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic

Note: This post has been edited from Sue/Ken's post to include up to date information.
 
Thanks you so much for your reply, i am a worried mum, i will get her to join ASAP, it is type 1 she was diagnosed with.
 
mimi73 said:
Thanks you so much for your reply, i am a worried mum, i will get her to join ASAP, it is type 1 she was diagnosed with.
Click to expand...

You have had a reply from Daisy above, some good info there, it will be daunting and a bit of a panic at first but providing you remain positive things will work out eventually, it's not as bad as one thinks, once you've got the info and more organised. Good luck supporting your daughter.
 
Hi Mimi,

It's a terrible shock and there is a huge amount to take in, but please take solace in the fact that everything will become clearer as the days pass.

Type 1 diabetes is a serious but eminently manageable condition. You should ask your daughter to join the forum as she is the one who really needs to understand what is going on and how to take control of the situation.

For both of you I'd say do the following;

Read as much as you can about diabetes; start on here and then get the book 'Think Like A Pancreas' by Gary Sheiner and 'Blood Sugar 101' by Jenny Ruhl at the very least. The best book I read about diabetes was The Diabetic Solution by Richard Bernstein.

Where is your daughter living and what access to health care does she have?

She needs to attend diabetic clinics and get as much help from them as possible; I'd say take the most help you can; if they offer an insulin pump take it!

Ask questions and don't panic; everything will be fine if your daughter can get passed the shock and get on with her life with diabetes.

Best

Dillinger
 
Thanks so much and i know things will get easier the more we learn, i have bought her the 'think like a pancreas ' book just now and also one about carbs in foods.

She has access to doctors but she doesn't want a pump at the moment, it's something to think about for the future, i will encourage her to get on here, i think it would really help her.
 
I just bought all the books, she will be home for xmas so i can read them until then and give them to her, thanks so much
 
Hi Mimi . . .

I was diagnosed (T1) at aged 25, just a few months after moving abroad. I spent 2 weeks in hospital, as I remember.

I was away from family, and also not good enough with the language to attend any courses. But for me it all worked out OK. The circumstances forced me into taking control of the condition for myself and discovering how to manage things . . . and this is, I think, what every T1 needs to do. Relying on other people will not get you very far with T1 Diabetes.

I still vividly remember the facial expression, the pursing of the lips, the shaking of the head, of the hospital Consultant when he learned that I was a 25-year-old expat living alone. He thought that I had no chance of being able to manage things. If he was using clever reverse psychology, then Hats Off to him! It worked brilliantly. I was quite offended that he thought that way, and resolved to get the thing under control immediately. I had great luck that the very first book that I bought/read was Diabetes Solution by Richard Bernstein. This set me on the right path straight away, and I made many changes for the better.

I changed to a diet and exercise routine which, because of the Honeymoon period, meant that I did not need to inject Insulin for another 2 years. Something like this is great if you/your daughter are worried about overnight Lows; this problem is completely taken out of the equation for the initial time period of adjustment.

Of course you are a parent concerned for your child and you want to help in any way . . . completely natural . . . but just wanted to give you a story that shows how it can be for the best that the person diagnosed really needs to take control of things for themself from the start, when family are not physically close by.

Best wishes
Antony
 
Hi mimi, what a shock for you both, sorry to hear of her diagnosis. It can be a scary, bewildering and an anxious time. It will take a little time to get used to being type 1 and with time it will get a little easier to cope with, but mum's just can't help but worry about their children, no matter what age.
We have a terrific forum here and I'm sure your daughter would really benefit from all the helpful advice and especially the support
Once she finds her feet, nothing should stop anyone from having an active and fulfilling life with type 1.

If there is anything you would like to know, just ask, as there is normally someone who comes along to say hello.

Take care and try not to worry too much

Best wishes RRB x
 
Hi and welcome. I assume your daughter is on insulin and hopefully what is called the Basal/Bolus regime i.e. a long-acting and short-acting insulin. This regime can give excellent control once the number of shots comes under control. Hopefully she has been given some guidance on this from the hospital or nurse but this does not always happen. Ideally there should be some ongoing support for the first few weeks and then every 3 months for a while and possibily then every 6 months. Do come back here or on the T1 forum if more advice is needed on insulin. When under good control, hypos can be quite rare; I've never had one in 2 years but come close once or twice. Some others do find control more of a problem so we all vary.
 
Antony, thank you so much for writing to me, your story is very ancouraging, so did you stay abroad? my daughter is also not able to do the course and all the materials givem to her , including prescriptions and instructions are hard to understand for her, I spent 2 weeks with here from the day she was admited to hospital, things seem more coplex than in UK but she is showing confidence and i am so proud,she is just getting on with it.
my biggest worry is her being home alone, flat mates work shifts , sometimes at night and they are also youg and go out a lot and i worry that if she did get into trouble no one would be there to help.
Do you drink alchol? how do you manage it? my daghter was told she will be able to have a glass of wine with a meal at some point but for a 20something year old who wants to go out with friends and have fun that doesn not sound good, has your type 1 ever stopped you traveling? my daughter was saving for a trip to India and i am worried about her going , everyone knows you can get a nasty tummy bug in India, i did! I dont want her to stop having fun but some aspects of it worries me. I bought the book you suggested , thank you again for getting in touch, it really helped ! all the best
 
Thanks so much for your reply, yes she is on Apidra and Lantus and she is seeing the GP every week at the moment, her levels seems ok at the moment but i know it will take time to work out how exactly to keep it in control, very good to hear you have not had a hypo in 2 years, when it does happen do you recognise it straight away and were able to treat yourself? if it happend at night would one feel it? i guess that's my biggest fear, what is the ideal level to go to bed with? i'm very grateful for your reply and others here, such a friendly community, so welcoming and very helpful x all the best
 
think i may have got your name wrong, oops! sorry
 
I went through something similar last spring myself, Everyone above has some great posts but i just wanted to ad that she will likely be feeling a little be down this holiday season because everyone puts so much emphasis on food, and sweets, and at this point she likely hates food (or at least i do lol)

She may be a bit like me - at this point i have no problem managing my sugars but i always feel the worst at gatherings when everyone is snacking on treats, or eating big meals i know i can't, i can and end up feeling terrible and have high sugars all night..

One of the best things (i think) you can do, is not to place as much emphasis on food when she is around. To often people bring out pies, or cakes, or treats and sit them on the table and its dreadful to sit there staring at them knowing i really shouldn't eat them. Its even worse when people offer you sweets saying things like "Oh one won't hurt!" or "Its Christmas, live a little" that stuff just makes me feel the worst, especially when i have to be polite and continually refuse your home made baked goods.

I guess i my point is - down play sweets and treats and baked goods, if there aren't there she wont have to resist, or politely refuse. it takes much less effort and allows her to enjoy the time rather then dread being in a room filled with baked goods that she loves and can't eat :/

At least that what i wish my parents would do for me this holiday season haha (i have told them and their response was - 'Don't be silly! you worry to much you will be fine" and the answer is no, its SO hard :/)
 
Thank you so much for taking the time to write to me, she is coming home for xmas and your reply was very helpful to me,
my daughter says she is missing having a drink with her friends and i know that at xmas its going to be even harder, all the food that is around, like you say sweet things, i am going to make sure we make some recopies that have less carbs, i hope that you still enjoy the holidays and enjoy spending time with people you love. are you around the same age as my daughter? do you drink alcohol? how do you manage it? you are right she is like you and is ok most of the times but it's going out with friends and not being able to drink which is difficult! have a lovely xmas xxx
 
Things with less carbs are better, but the best thing you can do is write down how many carbs and fiber is in each 'serving' of whatever it is you have around, and write down how much a serving size is. That way she can plan to eat certain things and then inject accordingly.

The hardest thing for me has been drinking alcohol, and 'grazing' in social settings.. I was told that i can't 'graze' anymore.. that is you can't go to a gathering and have small helpings whenever you feel like it, or when your bored.. Unless you are on the pump you are pretty much limited to eating all your food at one maybe two times and thats it otherwise you will be injecting multiple times in a night and that can be really tricky and frankly too many needles for my liking.

Alcohol is tricky as well because it can raise and then drop your sugars overnight, so lots of times people drink, test and see they are high so they inject and then drop really low in the middle of the night when both the insulin and alcohol kick in. I have since found its best to give up drinking and give up grazing, until i can get a pump :/

In my opinion (others my vary) but I have the best time when i am not in a situation that could tempt or pressure me (i don't go to buffets, or pot lucks, or baked sales, or any place where people will be constantly eating) Home made treats are the worst because no one knows how many carbs and fiber they put in, and then when you tell them you don't want any they feel bad! Its lose-lose so i try to avoid those situations lol

This will be my first Christmas with T1D too, its going to be rough, and i think i will make short visits, and avoid meal times :/ I don't want to hurt anyones feelings buy turning down the cookies they spent all day baking haha (or eating them and ruining my health for the day! )

Everything will be fine, and she will be just fine, i just personally find things easier if they just aren't around to cause problems in the first place. Less arguments and awkward moments.
Especially since many people tend to get really irritable and bothered easily with high sugars soo those extra treats may literally cause arguments later on haha
 
My mum is exactly the same haha

I was diagnosed a few months back at 22 after spending 4/5 days in hospital, it was daunting at first thinking that you're stuck with it forever but it gets a lot easier. A now feel a lot better than i have in a long time and diabetes hasn't affected my lifestyle at all, it is a hindrance but it's easily controlled.

About the hypo's, it could be different for every person but i can quite easily tell when i'm going low (head ache, shaking, hungry etc) so that's my warning to go and check. I've only had one hypo at night but it did wake me up, no worse than the day time.

I've also been out a few times and had a few drinks (probably more than i should) but it's just important to keep an eye on your blood sugar, mine tend to rise but will go slightly low after so as long as i have some food when i get in it's no problem at all and sugars are back to normal in no time.


Edit* just make sure a few friends know what to do if anything does happen
 
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