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Original poster

I need a hand hold. 7 year old son diabetic ketoacidosis

20 replies

MeMyCatsAndMyBooks · 15/03/2023 18:20

I know this is outing but I don't care.

For the past few weeks my 7 year old hasn't been himself he's been super tired, thirsty constantly, hungry constantly I just put it down to a growth spurt.
He started having foamy urine and I thought oh he's drinking more so of course he'll have bubbles as it's coming out so fast.
Saturday he had a weird sweet smell, took him to a&e as suspected something wasn't right but couldn't explain what. They sent him home.

Yesterday he came home from school threw up everywhere, I knew something wasn't right he was extremely fatigued.

Took him straight to the GP who did a urine sample came back positive for ketones & sugar in his urine, rushed to a&e to be told he's having a diabetic ketoacidosis episode and I had left him a day or two longer he'd ended up in a coma or worse. 😭

I feel awful I missed the signs, nobody in our immediate family has diabetes so I never thought it'd happen to him.

He's currently on 3 different drips and insulin. Is it easy to look after a child with type one? He's nil by mouth but keeps begging me for water. 😭

OP posts:

handmademitlove · 15/03/2023 18:34

You didn't miss it. A&E did. Please don't blame yourself...

Dodgeitornot · 15/03/2023 18:36

Your child got sent home from A&E with very clear signs of diabetes and you're blaming yourself? Please OP. If not for you advocating for your son, he'd be in a coma of dead.
Give yourself some credit, you deserve it.

WiseUpJanetWeiss · 15/03/2023 18:38

Gosh OP how frightening. I can’t comment on care of a child with diabetes, but if he still has to be nil by mouth he should be receiving frequent mouthcare to keep his mouth from getting sore.

Interested in this thread?

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Children's health Diabetes General health

Dodgeitornot · 15/03/2023 18:39

As for whether it's easy.. yea and no. You have things like Dexcom on the NHS now and far better technology. You will be seen by a specialist nurse before you leave and be looked after by the community ones once you're discharged. We had a child diagnosed when I worked in a school. The community nurse trained me before we set off on a residential. They're incredible and knowledgeable. Your mental maths for carbs calculations will improve very quickly and you'll get into the swing of things. Don't worry. Take it one step at a time. Give him a cuddle and know he's in good hands now.

strawberryicecreamice · 15/03/2023 18:39

Happened to me 21 years ago got sent home almost in a coma. It's not your fault. Sad things haven't changed.
Your son will start to feel so much better very soon. Wishing you all well.

OrlandointheWilderness · 15/03/2023 18:40

Absolutely mad that after presenting like that with a sweet smell they didn't immediately just check his glucose levels!

JazzDazz · 15/03/2023 18:42

Oh I’m sorry and that is appalling that he was sent home from A&E on Saturday, they should have picked it up, no excuses. Poor wee thing. He’s in the right place now. Is it hard to look after a T1 child? It’s overwhelming at first. You’ll have a lot to take on board and may feel swamped but I can promise you will get your head around it and your ds will be fine. Finger pricks, blood glucose levels, carb counting food and insulin … it will all become second nature. Your son will adjust, give him lots of reassurance and support. My T1 was dx’d at 3 and is 19 now. If you’re on Fb, I would really recommend a group called UK CWD AG. Someone is always around for support and to answer questions.

Paturday · 15/03/2023 18:46

Oh what a poppet. Hope he’s back to himself soon and it’s an OK transition for you into managing his diabetes ❤️

SweetSakura · 15/03/2023 18:47

Don't beat yourself up at all! I have 3 friends with children who were diagnosed with diabetes and they all have similar stories.

He's in the right place now. And while it will be a challenge at time there are a lot more options available and lots of support as well. I know my friends have found their diabetes specialist nurses a huge source of support.

DonnaDonna0 · 15/03/2023 18:48

My son was diagnosed at age 4, 18 years ago. I know it’s a massive shock at first but it becomes second nature plus the advances in Insulin pumps; so do need for multiply daily injections and sensors (like the libre ones) mean finger pricking is a thing of the past too.

Sceptre86 · 15/03/2023 18:49

My sister was 14 when due was diagnosed. Repeated trips to Gp but got nowhere and my mum was labelled a pushy mother. She knew something was wrong, sister wasn't the type to sit still but she was coming home and falling asleep. Drinking lots and just so tired. She lost weight. My mum finally managed to get a second opinion where she pushed for them to check her for diabetes as we have lots of type 2 diabetics in the family and she recognised symptoms. Sister was blue lighted to a and e. Mum was told she was a few hours away from not making it. She's 30 now, has a son, works full time and you wouldn't know apart from the monitor on her arm.

You will meet a dietician and other members of the diabetes team and they will talk to you both about management going forward. It may well be tough initially but kids are resillient. Lots of things have changed since my sister was diagnosed and advances are made all the time. Will it be easy to look after him? Honestly is it ever when you have a child with a longterm condition? You have to be on the ball with symptoms, management and it will be an adjustment for your family. You'll get on with it because you have to, eventually becomes second nature.

It's OK to be upset who wouldn't be but do not blame yourself. You didn't fail him, A & E should have never sent him home. When things calm down I'd contact PALS and make a complaint, they need to review the care he received and learn.

Blabla81 · 15/03/2023 18:50

I have family members who took their then 6/7 year old to A&E for the exact same thing. If it wasn’t for the mum demanding that she be tested, she would have been sent home too. When the mum told the nurses what she suspected, they as good as rolled their eyes at her. So your experience is of no surprise.

Mariposista · 15/03/2023 18:56

Please don’t blame yourself. You got your son medical care and that makes you a great parent. You are not a diabetes expert - that is what the doctors are for and it sounds like they missed a chance to get this earlier for whatever reason.
Diabetes treatment is evolving all the time. It’s no longer the death sentence it was and your son will be able to live a full and healthy life with proper management.

Beachysunsets · 15/03/2023 19:26

Handhold for you OP 💐 you are where we were 2 years ago. DS is now 15 and thriving. It isn’t easy to look after a child with T1D but you will have support from the paediatric diabetes team and it will be become your new normal very quickly and part of your routine. I don’t remember dishing up a dinner without weighing everything out and counting carbs, it’s second nature now! the technology now is incredible with dexcom and omnipod and gives them - and you- much more freedom.x

x2boys · 15/03/2023 19:34

MeMyCatsAndMyBooks · 15/03/2023 18:20

I know this is outing but I don't care.

Yesterday he came home from school threw up everywhere, I knew something wasn't right he was extremely fatigued.

I feel awful I missed the signs, nobody in our immediate family has diabetes so I never thought it'd happen to him.

He's currently on 3 different drips and insulin. Is it easy to look after a child with type one? He's nil by mouth but keeps begging me for water. 😭

Wow the same thing happened to my 16 year old three weeks ago! In his case his pancreas had failed,but the DKA cleared up very quickly ,its very frightening ,but my son is so much better now.

loislovesstewie · 15/03/2023 19:37

My adult child has had T1 for about 25 years. You did everything you could so please don't blame yourself. You got the help he needed in time and he now has the appropriate treatment. You will be given lot of info, lots of support and appointments with the paediatric diabetic team at regular intervals. It's a lot to take in. Don't be afraid to ask questions if you aren't sure about anything and make use of the help available. You should also be able to apply for PIP as he needs help above and beyond what another child needs. Make sure that his school and other cares know what he needs and be stroppy with them if they don't listen. Diabetes UK have lots of help too. Oh and try to rest yourself, I bet you have been frantic.

itsgettingweird · 15/03/2023 19:43

Trained a and e doctors missed it and you - who knew something wasn't right and sought help are blaming yourself?

Please don't. You acted swiftly and correctly both times.

I wish him a speedy recovery

littlebirdieblu · 15/03/2023 19:56

My son was 8 when I knew there was something wrong, I was dismissed by the gp on 3 separate occasions, even though he was clearly losing weight, looked ill and was getting horrendous headaches. One night he was up so many times to pee and was so thirsty I just knew it was diabetes. Took him to the gp again with a wee sample I'd got him to do in a Tupperware pot. They tested it and like you we were then told to go straight to A&E. He's 23 now and he can't remember ever not having type 1. The beginning was tough as it's all a huge learning curve, but it does get easier, especially as technology has moved on so much since he was first diagnosed. Thinking of you and sending positivity.

Beachysunsets · 16/03/2023 10:34

@MeMyCatsAndMyBooks How are you both doing today OP?

pointythings · 16/03/2023 11:15

You did everything right. That A&E department completely failed you, the symptoms should have prompted testing for diabetes.

A friend of mine has a DD who was diagnosed age 9. She had a steep learning curve and a lot of stress, but her DD now has a pump and leads a full, active, healthy life. She had to fight for the Libre as the government was refusing to fund it (despite Theresa May having one!) but that is in place too now. You will have support from hospital and community teams, and don't hesitate to be the squeaky wheel.

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