Worried sick newly diagnosed type 1 child

doingitforbee · Oct 23, 2016

Hello

My 4 year old daughter has very recently (7 days ago) been diagnosed with type 1 diabetes. She was taken to hospital with severe DNK but thankfully overcame this issue

My problem now is since we have taken her home I cannot sleep at night anymore. Even thou we are doing everything we have been told ( 2 insulin injections in the morning and 2 in the evening) her blood sugar results range from 3 in the morning to 22 before bed , no ketones present as yet

I am constantly checking her blood sugar every hour , I struggle to think or smile as I cannot begin to understand how this illness has took hold of my child or what will her future be like ...

Basically I need to know what can i do to support my child , move on and live life again . At the moment I only feel sadness and absolute fear .

Does every parent feel like this , are my fears silly .

All I know about diabetes is from a crash course with my doctor and hours spent on google which resulted in terrifying accounts of severe hypos and something called "dead in the bed syndrome ... to be absolutely honest i am terrified

I understand you can't tell the future, I just need honest answers and loads of success stories please

All the best
Kev

Sent from my iPhone

seadragon · Oct 23, 2016

I'm not type 1 so can't answer your specific questions but I do know many people who have lived very good and long lives with type 1 so i know there are plenty of success stories around. Your reaction sounds pretty normal to me - stressful enough to be a parent and anything out of the ordinary that happens to your child is going to be even more stressful. Plenty of type 1's will no doubt be along soon to reassure you and answer any questions and help to allay your fears. Best wishes to you and your daughter.

doingitforbee · Oct 23, 2016

Ok thank you seadragon , the same to you

chalup · Oct 23, 2016

I think you sound like a wonderful parent and my heart goes out to you. I can't give you any practical advice but just wanted to let you know that all the support you would ever want can be found here. You have a beautiful child and you will both be all right. Welcome to the forum.

himtoo · Oct 23, 2016

hi @doingitforbee
welcome to the forum

I am tagging @mahola and @1Sarah1 and @Ellie's mum to come along and offer some support as they have children with type 1 diabetes.

shivles · Oct 23, 2016

My DD was diagnosed the end of July and all I can say is it gets easier! It's a major ordeal at first and you feel like you won't be able to do normal things with her but you learn it all really quickly and soon it becomes almost second nature for the most part. Being on here is a massive help to me as if I don't understand something I can come and ask here

Are you in regular contact with her diabetic support nurse?

Don't worry about checking too much, at this stage you need to so you can establish patterns and learn how her condition affects her. I test DD every hour usually from 6.30am to 7pm (bedtime) then also at 9pm 12am and 3am. I'm learning now when I can skip certain checks, last night for example I knew I didn't need to do the 3am check and just got some sleep!

I know it's early days but have a look into continuous glucose monitors, my DD is having one next week and I can't wait it's going to relieve so much anxiety for me.

azure · Oct 23, 2016

Hi @doingitforbee

It does get easier. The early days are very stressful but gradually you'll get a handle on what's happening.

Don't worry too much about the erratic sugars for now. It'll take a while to get yoyr daughetr's doses sorted out and they may be altered a number of times. If you haven't been shown already, ask about carb counting.

Ignore Google - you'll scare yourself unnecessarily. However, you could get a book or two. Think Like A Pancreas is good for Type 1s, and there's also a book more about children called Type 1 Diabetes in Children and Young Adults.

Ask as many questions as you want here. Knowledge is power.

Best wishes to you, your daughter and all your family.

catapillar · Oct 23, 2016

doingitforbee said:
All I know about diabetes is from a crash course with my doctor and hours spent on google which resulted in terrifying accounts of severe hypos and something called "dead in the bed syndrome ... to be absolutely honest i am terrified
e

Sorry to hear of your daughters diagnosis, I hope she is recovering well from DKA and feeling lots better.

To understand a bit more about type 1 - what it is and how it can be managed there's a book called "think like a pancreas" there's also a free online course on carb counting - http://www.bertieonline.org.uk Both of those resources are aimed at adults but might be good to give you a general idea of the principles, obviously applying anything learnt will require caution in a little one and you should discuss with her DSN. I think @noblehead has mentioned a book aimed at/for children.

Edit: covered by @azure

Daibell · Oct 23, 2016

Hi. It might be worth us knowing what the insulins are that are given four times a day? Children need to be treated more carefully than adults with T1 but we may be able to give you some questions to discuss with the nurse. For many, the liver is quite good at doing a glucose dump if the blood sugar runs too low so don't panic and just keep the meal patterns similar and the injections whilst you gain experience.

T1Dad · Oct 24, 2016

I feel your pain. My daughter was diagnosed end of July this year aged 5. It probably took us a good 6 weeks to come to terms with it all. It is a lot to take in at first but it will get easier like some of the others have already said.

What has helped us is talking to other parents in our local area and also talking to adults that have had it since childhood. So far, everyone has been really positive and we have no horror stories on account. The horror stories will present themselves on Google as you have already found. Try to ignore them. I went through the same googling adventure at first.

We have continued life as normal. My daughter still attends all her extra-curricular classes and goes to all birthday parties etc. She eats cakes at the parties and we have not had to change her diet very much at all. The school she attends have been fantastic. The only thing now is that she cannot sleepover at grandma's house and we cannot leave her with her friends' parents during parties and such.

Do look at CGM's. We have the Freestyle Libre (not strictly a CGM) and cannot imagine life without it. For around £3.50 per day it is worth it. The advances in technology is what gives us some hope that one day she can lead a more carefree life.

Any questions...just ask.

CathP · Oct 24, 2016

Hi,

My daughter was diagnosed last November, aged 4, also in advanced DKA and spent 3 days in HDU. It's a nightmare I know. We're over the shock now though, and although it's a massive inconvenience, the fear has gone and we've reached a new 'normal'. The best thing we did post dx was get a dexcom CGM. We've had to self-fund as our health board are rubbish, but it's been life changing, and given us back our sanity, sleep, and daughter her health. I can't recommend dexcom enough. In conjunction with nightscout it gives you back your peace of mind.

Best wishes to you.

Ellie's mum · Oct 24, 2016

Hi @doingitforbee

Ellie was diagnosed in feb this year. We had taken her to the doctors with concerns over weight loss and extreme thirst, 24 hours later they were admitting her to hospital with dangerously high blood sugars. The nurses commented on the fact they hadn't seen a child so poorly who appeared to be so well (Ellie was actually complaining she was stuck in hospital rather than going to school!)

Ellie was put straight on to insulin and we spent 3 days learning the basics of everything the hospital thought we needed to know. After 2 weeks Ellie returned to school - would of been much sooner if she'd had her own way.

I thought we was all coping really well with it but I soon found I couldn't concentrate when I was at work and was constantly checking my mobile in case school had rang. Then Ellie had a hypo in the night and that knocked my confidence in dealing with her completely. I found I was spending all my time reading things on the internet and I got myself in a right old state resulting in 7 weeks off work with stress.

After I found this forum, my thinking of things really started to change. These are real people, real problems, real advice and totally helped change my way of thinking and it's helped me through so much

The support from Ellie diabetic nurses has also been amazing, not a week goes by without us being in contact with them and vice versa.

Ellie hit the 'hooneymoon period' within weeks of diagnosis And suffered high bloods after breakfast but come dinner she is was just in 'normal' range which was really hard to cope with but we made it through. September came and so did the high bloods again as it now appears that Ellie is coming to the end of her honeymoon period. After months of trying to convince Ellie that a pump would be best for her she has finally admitted that her nurses were right and fingers crossed she is due to start using 1 just before Xmas.

If you was to ask Ellie how she feels about it all she would tell u it sucks but she still has her normal routine of swimming, scouts, majorettes and grandmas at a weekend

My personal opinion, I honestly feel like I have been to hell and back in the last 8 months, I have had the same fears as you, had too many sleepless nights even cried in Sainsbury's cos we couldn't find the sugar free lollipops that Ellie likes. Sometime I feel like a mad woman, sometimes I feel like no one else is capable of looking after Ellie like I do.

But from the bottom of my heart I can tell you that it does get easier, stick to the diabetes uk website and this forum for your information, JDRF are also really good and have excellent resources to download, they also have a 'Rufus bear' for your daughter if she doesn't already have one.

Please fire away with any questions you have as there will always be someone along to offer you advice and support

agila1 · Oct 24, 2016

My son was diagnosed 4 years ago in November at the age of 9,the day he was diagnosed was the day I felt the world had ended.I to like you could not sleep at first with constant worry and constant testing,but I will say to you as the months and years go by even though this is still a massive worry in mine and my sons life it does get easier,i still have some very late nights going to bed with treating hypos etc as he still doesn't wake when hes having them,but its become "normal" life now.It will get easier and will learn to cope with it better as time passes,good luck to you both

Poe.b · Oct 24, 2016

doingitforbee said:
Hello

My 4 year old daughter has very recently (7 days ago) been diagnosed with type 1 diabetes. She was taken to hospital with severe DNK but thankfully overcame this issue

My problem now is since we have taken her home I cannot sleep at night anymore. Even thou we are doing everything we have been told ( 2 insulin injections in the morning and 2 in the evening) her blood sugar results range from 3 in the morning to 22 before bed , no ketones present as yet

I am constantly checking her blood sugar every hour , I struggle to think or smile as I cannot begin to understand how this illness has took hold of my child or what will her future be like ...

Basically I need to know what can i do to support my child , move on and live life again . At the moment I only feel sadness and absolute fear .

Does every parent feel like this , are my fears silly .

All I know about diabetes is from a crash course with my doctor and hours spent on google which resulted in terrifying accounts of severe hypos and something called "dead in the bed syndrome ... to be absolutely honest i am terrified

I understand you can't tell the future, I just need honest answers and loads of success stories please

All the best
Kev

Sent from my iPhone

It's very normal to feel the way you do. I felt exactly the same when my daughter was diagnosed. Just like someone had ripped my heart out of my chest, threw it on the floor and stamped on it. Thinking how on earth are you every going to be truly happy ever again. If it helps for me it was like a wave of horrendous emotions brought in on the tide that could strike at any time. Every time the tide brought the emotions in it was weaker than the last time. It does get better and you do laugh and smile again. Your child will take it in her stride I am sure. Lots of people live really healthy lives, a lot more healthy than some people. Don't concentrate too much on the drawbacks look for the positives and think positive. Everything will be fine.

Cambo1107 · Oct 24, 2016

doingitforbee said:
Hello

My 4 year old daughter has very recently (7 days ago) been diagnosed with type 1 diabetes. She was taken to hospital with severe DNK but thankfully overcame this issue

My problem now is since we have taken her home I cannot sleep at night anymore. Even thou we are doing everything we have been told ( 2 insulin injections in the morning and 2 in the evening) her blood sugar results range from 3 in the morning to 22 before bed , no ketones present as yet

I am constantly checking her blood sugar every hour , I struggle to think or smile as I cannot begin to understand how this illness has took hold of my child or what will her future be like ...

Basically I need to know what can i do to support my child , move on and live life again . At the moment I only feel sadness and absolute fear .

Does every parent feel like this , are my fears silly .

All I know about diabetes is from a crash course with my doctor and hours spent on google which resulted in terrifying accounts of severe hypos and something called "dead in the bed syndrome ... to be absolutely honest i am terrified

I understand you can't tell the future, I just need honest answers and loads of success stories please

All the best
Kev

Sent from my iPhone

I don't remember what it's like to have diabetes at a young age (I've had diabetes since I was 19 months old), nor do I know what it's like to have a kid with diabetes, but as most others have said, it does get easier. The only thing I'd say to do is to keep an eye on her the best you can, check her blood sugars a lot to make sure that she's fine, if her blood sugars are low, give her something to correct that and then test again about 10 or so minutes after to make sure her sugars have gone up, and haven't gone too high. Without knowing what insulins she's on, it's hard to know what else to do, if her sugars are too high, depending on the insulin, she could need a correction dose, but since she's still very young, she probably won't be on the same insulin as most of us here, so our advice may not be best in every way.

The best thing I'd say to do is to just keep an eye on her whilst you're both trying to get used to it, look for all the signs of high sugars and low sugars, and check on her in the night, and within the first few weeks, maybe wake her up once a night or something to test her sugars then too.

Minnie_19 · Oct 24, 2016

Hi Kev,

I'm so sorry to hear about the diagnosis of your daughter. I can imagine it must be absolutely terrifying to go through it all with such a young child. However, I hope my own story and that of my younger brother will bring you some comfort and help you realise that your child still has a happy future ahead of her.

The internet can be a wonderful resource but it can also terrify the hell out of you, and all of sudden you can only see the awful things that can lie ahead. Diabetes can be a cruel disease if left uncontrolled and unmonitored. However, with your support and close monitoring I'm sure your daughter blood sugar control will soon become controlled and you will begin to work out what works for her.

Don't feel bad when it's up and down like a yo yo to start with, that's completely normal and your Diabetes team will help wonders with that. I'm sure you'll feel helpless and she will have bad days when she doesn't want to have it anymore. I remember going home for the first time and my mum injected me and made me bleed, at the age of 6 I didn't really understand and I apparently I started crying which lead to my mum bursting into tears! It made her feel awful, but we got through it and I think my diabetes has actually made our relationship even stronger than it would have been. We have been through it all and have still come out the other side.

I was first diagnosed 22 years ago and although it took awhile to get my blood sugars controlled I am finally here! My Hba1c is spot on, I have no side effects from my diabetes and I am able to live a normal lifestyle (obviously with some slight alterations!) I have trekked all over Peru and next year im off to Thialand and Indonesia for 5 weeks. Your daughter will be able to do anything that she sets her mind too. It might not be as easy for her as it would be for her friends but it will never stop her.

My younger brother was also diagnosed as a type one at the age of 7. For me having already been through it all it was nice to support him through it too. He also lives a completely normal life and is actually still on injections and manages his diabetes reasonably well.

There have been so many wonderful medically advances since I was diagnosed those 22 years ago. I'm now using a insulin pump which has changed my life and allowed me to work shifts more easily and achieve my dreams to travel. I think there is much more options for children to have pumps these days which is fantastic and I wish I had mine sooner as I didn't start on a pump until I was 21!)

With the ability to access continuous blood glucose monitoring (unfortunately at a cost) and the other developments in diabetes management you never know what the future will hold. Hopefully this will mean even better care for your daughter and a huge reduction in complications in the future. Perhaps the CBGM maybe something to consider if it helps you sleep better at night? But do remember it's early days and things will change and settle.

Wish you all the luck and I hope your daughter is doing okay.

ljmercer · Oct 24, 2016

Hey there.

I have had Type 1 Diabetes for almost 10 years now (I'm 17 years old) and can remember my mum looking after me in a very similar way after I was diagnosed.

It's natural to feel the way you do, and to worry as you are. I was beginning to show signs of DKA when I was diagnosed. I remember the 2am tests that she used to wake me up to do to be sure I didn't go hypo with a low blood sugar.

There's such a thing as a honeymoon period, where the control is really good. It happens after a month or so of treatment. Don't feel upset about it. It doesn't rule your daughter's life. She will end up ruling it.

It takes time, and it's a lot to learn about. The greatest thing that my Mum did for me, was make sure I was still a child. Still did everything as normal. The diabetes was only an add on. This philosophy has meant that I've been on school trips, gone abroad with my high school, went to my friends' birthday parties and have grown up without it ruling me.

I have bad days, and good days. Good Blood Glucose (BG) results, and bad BG results. Don't focus on the numbers as they aren't everything. Overall control is better. If you can get down the variability (the range of BG results you're getting), then that's great, amazing.

Hypos (low BG results that are 3.9 and below) can be treated and so can hypers (high BG results of usually 14.0 and above).

You have done the very dangerous thing of reading what's posted on the internet. Take a step back. Deaths caused by diabetes are extremely rare now because of the advanced level of treatment available. I have seen so many breakthroughs in the 10 years I have had this condition. It isn't an illness. I'm not that different. I just have to do different things to survive and life my life to the fullest.

If you have any questions, please ask me. I'm more than happy to answer them and I hope you find this useful! X

Sam 1187 · Oct 24, 2016

I'm sorry to here your little one was so poorly, I'm a t1 adult but have a good friend with a child who is t1, I could not recommend a cgm for children any more highly. I can't afford to self fund one but my friend did for her son and it's been life changing!!(if that was financially possible for any diabetic I say do it) personally could not think.of anything worse than being tested EVERY hour, but also understand your fear as a parent - I think you need to fins a happy medium, possibly before meals and 2 hours after. Then maybe couple times during the night? Also speak to your dsn about a loan of a cgm from there clinic. I know my clinic have a few they can loan out for a week to help find patterns ect. This might help you gain confidence in what your doing and also give you both a rest. There should be help available for you, don't be alone in this xxxx

Bluemarine Josephine · Oct 25, 2016

It will get harder before it gets easier; but, it will get better. You just have to make it through the hard part first…
And the reason it gets easier is because you get better at it.

Please, believe me, we have all been there. Handling diabetes is a journey of a thousand miles and you are now on your first step. Life is not easy for any of us type 1 diabetics. We must have perseverance and above all confidence in ourselves. We must believe that we are gifted and that this thing must be attained.

Here are my suggestions:
1. Become as much educated as you can.
You will never be able to experience what your child is going through and will be going thorugh; diabetes is here to stay… it isn’t a flu… it won’t go away with patience and medication.

So, the more you know about it, the more prepared you will be. Get into a DAFNE course. Learn carbohydrate counting and how to make insulin adjustments on your own. Learn how insulin works, when it peaks, when it tails off, how 2 insulins work (quick acting and background) when their peaks coincide, study the glycemic load of foods and adjust the meals depending on the body’s insulin sensitivity during the day.
Learn sickness rules (you will need them more than you can imagine). Learn how exercise affects insulin absorption.
Most of all, observe what is happening.
The best diabetics are the observant ones.

2. Get a Freestyle Libre for your child.
You will be able to check her blood sugar as many times as you like painlessly.

3. Never, ever, ever show to your child that what happened to her is a misfortune.
Life is like this… it throws things at us…

Keep encouraging her. Make her feel proud about herself because she has to learn to carry the mountain she was destined only to climb. Diabetics need to be in a very good psychological and mental place in order to perform well with their handling of diabetes.

Life does not get easier or more forgiving; we get more resilient.
Stay Strong.

Regards
Josephine

P.S. Most of us check during the night...to avoid nocturnal hypoglycemias. I check at 21:00, again at 24:00, again at 03:00 and again at 06:00... You will have to make life adjustments which look irrational to others.
P.S.2: The "dead in bed" syndrome is not as often as it sounds to be... with all the things that we have in our disposal nowadays (like the continuous glucose monitors and the education that we receive) we are able to eliminate such incidents. Relax about this... people don't die from diabetes anymore... these are very rare incidents.
P.S.3 Insist on participating in a DAFNE course, if you can. I cannot stress enough how valuable it is.

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