Mum to newly diagnosed T1 daughter, feeling guilty and angry

[Leeleexcx]

Hi,
So glad i found this site!
12yr old daughter was a bit 'run down' the last few weeks - constant indigestion after eating to the point it was making her sick, oral thrush, dry mouth, peeing more than usual, constipated, lost weight, moodier than usual and her eczema was out of control plus she kept going a funny grey colour in her face - looking a bit bruised. GP gave meds to treat all 'illnesses' listed, but couldn't take bloods due to daughters 'rubbish' veins. She gave us a number for our childrens hospital to make an appt to get bloods taken to rule out anemia and diabetes, but didn't say she was concerned about this and sent us home with medicine and a poo testing kit - she refused to let my daughter take off her face mask to see the colour of her face too. When i finally got through to the hospital the nearest appt was 24/2/21. In the meantime daughter was taking meds for all the individual symptoms and we were doing all the usual parent stuff when your kid is ill - plenty water (ah thats why she's still peeing loads), loads of fresh fruit/veg/toast and tea (ah that's why she's lost a bit more weight, the change in diet), letting her rest loads (ah that's why she's not as hungry plus she's constipated so it seemed to make sense to us)....come Tuesday last week she still wasn't looking well and had been lethargic all day so took her to A&E as it just wasn't sitting right with me and just didn't feel right to wait til Feb for bloods. Within 30mins of triage I was told my wee girl was in DKA (had no idea what that was at that time) as her ketones were over 18, her bloods didn't read on the blood glucose machine, just said 'hi' so were told they were over 30 and she was severely dehydrated. Within the hour she was in the high dependency unit on all sorts of drips, insulin and having hourly blood glucose tests. The doctor said that she was dangerously ill and if she hadn't been brought to hospital she may have just went to sleep and not woke up.
We got home on Friday night as she has obv picked up great and we were given lots of training and education to help manage her condition. I'm feeling confident going forward in handling what's to come but I'm so anxious right now. I'm riddled with mum guilt that in trying to make her better we were effectively doing the opposite and I'm scared to sleep incase she doesn't wake up or something happens in the night. I'm so angry that the GP didn't think it was serious enough to send us to A&E that day and that I took her advice and ignored my instinct not to take her myself the same day. I'm angry that I waited nearly a week to take her myself whilst waiting for the medicines from the docs to kick in too. I guess I'm just wondering if this is normal and will it ease?

 

[Freema]

Hi,
So glad i found this site!
12yr old daughter was a bit 'run down' the last few weeks - constant indigestion after eating to the point it was making her sick, oral thrush, dry mouth, peeing more than usual, constipated, lost weight, moodier than usual and her eczema was out of control plus she kept going a funny grey colour in her face - looking a bit bruised. GP gave meds to treat all 'illnesses' listed, but couldn't take bloods due to daughters 'rubbish' veins. She gave us a number for our childrens hospital to make an appt to get bloods taken to rule out anemia and diabetes, but didn't say she was concerned about this and sent us home with medicine and a poo testing kit - she refused to let my daughter take off her face mask to see the colour of her face too. When i finally got through to the hospital the nearest appt was 24/2/21. In the meantime daughter was taking meds for all the individual symptoms and we were doing all the usual parent stuff when your kid is ill - plenty water (ah thats why she's still peeing loads), loads of fresh fruit/veg/toast and tea (ah that's why she's lost a bit more weight, the change in diet), letting her rest loads (ah that's why she's not as hungry plus she's constipated so it seemed to make sense to us)....come Tuesday last week she still wasn't looking well and had been lethargic all day so took her to A&E as it just wasn't sitting right with me and just didn't feel right to wait til Feb for bloods. Within 30mins of triage I was told my wee girl was in DKA (had no idea what that was at that time) as her ketones were over 18, her bloods didn't read on the blood glucose machine, just said 'hi' so were told they were over 30 and she was severely dehydrated. Within the hour she was in the high dependency unit on all sorts of drips, insulin and having hourly blood glucose tests. The doctor said that she was dangerously ill and if she hadn't been brought to hospital she may have just went to sleep and not woke up.
We got home on Friday night as she has obv picked up great and we were given lots of training and education to help manage her condition. I'm feeling confident going forward in handling what's to come but I'm so anxious right now. I'm riddled with mum guilt that in trying to make her better we were effectively doing the opposite and I'm scared to sleep incase she doesn't wake up or something happens in the night. I'm so angry that the GP didn't think it was serious enough to send us to A&E that day and that I took her advice and ignored my instinct not to take her myself the same day. I'm angry that I waited nearly a week to take her myself whilst waiting for the medicines from the docs to kick in too. I guess I'm just wondering if this is normal and will it ease?

What a grusome condition your poor Girl has been in , sosad you have had to experience her being that ill , you might try to find another GP to show your anger

 

[EllieM]

Unfortunately it's still relatively common for kids to get a T1 diagnosis via an admission for DKA. And unfortunately kids still die because the diagnosis is made too late. Hopefully your GP will learn from their mistake and be more careful in future. (But yes, I would be angry in your position).

The good news - 12 is old enough to be able to cope with most of the diabetes protocols (My heart bleeds for parents who have young T1 children of less than 2...). Also, no reason why she should ever have DKA again, as it is caused by lack of insulin and once you know you are diabetic there is never any need for you to be without insulin. (I'm assuming you are in the UK, where insulin and other medication is free for T1s). I've been T1 for 50 years, since the age of 8 and never had a DKA. (I was diagnosed early by a T1 mum who was almost in DKA when she was diagnosed).

And the treatments for T1 have improved drastically over the uears (pumps, continuous glucose monitors etc) so while it will be a life style change for your daughter there are very few options in life that will be closed to her. (Hopefully she's got no astronaut ambitions?)

Good luck to you and your daughter. It's not an easy illness to cope with, but it is one that you can learn to take control of yourself (and herself).

 

[Dark Horse]

Oral thrush, peeing more than usual and weight loss should have been red flags for type 1 diabetes. (Face colour would not have helped in diagnosis.) Abdominal pain can be a symptom of DKA. If the GP could not manage to do a blood test, a urine dipstick would have picked up glucose in the urine (the cause of the excessive peeing).

You did the right thing by taking your daughter to see the GP, and you did the right thing by following your gut instinct and taking your daughter to A&E so you certainly shouldn't be angry with yourself or feel guilty.

It would be worth putting in a written complaint to the GP practice stating the facts i.e. explaining that your daughter had dangerous DKA and asking why it wasn't picked up that she had diabetes during her GP appointment . If you put in an official complaint, there has to be an investigation to find out what went wrong. Identifying what the problem was could highlight the issue so it doesn't become a problem for another poor parent. You've had a terrible shock and worry so it's not surprising you feel angry but knowing that you've helped improve the system may go some way to making you feel better.

 

[EllieM]

a urine dipstick would have picked up glucose in the urine (the cause of the excessive peeing).

And you can also do a ketone urine test. Yes, any guilt or blame goes to the GP here, not the poor parent who just follows the GP's advice.

 

[KK123]

Hi,
So glad i found this site!
12yr old daughter was a bit 'run down' the last few weeks - constant indigestion after eating to the point it was making her sick, oral thrush, dry mouth, peeing more than usual, constipated, lost weight, moodier than usual and her eczema was out of control plus she kept going a funny grey colour in her face - looking a bit bruised. GP gave meds to treat all 'illnesses' listed, but couldn't take bloods due to daughters 'rubbish' veins. She gave us a number for our childrens hospital to make an appt to get bloods taken to rule out anemia and diabetes, but didn't say she was concerned about this and sent us home with medicine and a poo testing kit - she refused to let my daughter take off her face mask to see the colour of her face too. When i finally got through to the hospital the nearest appt was 24/2/21. In the meantime daughter was taking meds for all the individual symptoms and we were doing all the usual parent stuff when your kid is ill - plenty water (ah thats why she's still peeing loads), loads of fresh fruit/veg/toast and tea (ah that's why she's lost a bit more weight, the change in diet), letting her rest loads (ah that's why she's not as hungry plus she's constipated so it seemed to make sense to us)....come Tuesday last week she still wasn't looking well and had been lethargic all day so took her to A&E as it just wasn't sitting right with me and just didn't feel right to wait til Feb for bloods. Within 30mins of triage I was told my wee girl was in DKA (had no idea what that was at that time) as her ketones were over 18, her bloods didn't read on the blood glucose machine, just said 'hi' so were told they were over 30 and she was severely dehydrated. Within the hour she was in the high dependency unit on all sorts of drips, insulin and having hourly blood glucose tests. The doctor said that she was dangerously ill and if she hadn't been brought to hospital she may have just went to sleep and not woke up.
We got home on Friday night as she has obv picked up great and we were given lots of training and education to help manage her condition. I'm feeling confident going forward in handling what's to come but I'm so anxious right now. I'm riddled with mum guilt that in trying to make her better we were effectively doing the opposite and I'm scared to sleep incase she doesn't wake up or something happens in the night. I'm so angry that the GP didn't think it was serious enough to send us to A&E that day and that I took her advice and ignored my instinct not to take her myself the same day. I'm angry that I waited nearly a week to take her myself whilst waiting for the medicines from the docs to kick in too. I guess I'm just wondering if this is normal and will it ease?

Hi there, I just wanted to say that YOU saved your daughter's life, it's as simple as that. As a Mum you KNEW something was wrong and you acted, never forget that. As for your GP, well I know you've got enough on your plate at the moment but please lodge an official complaint, as stated above the GP should have been able to recognise the signs of a possible type 1 diagnosis and should have acted immediately and they need TRAINING. The GP SHOULD have done a ketone test and a finger prick test at the very least, that would have told her a lot. I am fuming on your behalf. For now though, it sounds as though with YOU as a Mum your daughter will turn out just fine! x

 

[Mrs T 123]

Hello and Welcome. Firstly, you have nothing to feel guilty about - we rely on professionals to give us the right information but as you have learned go with your gut feeling and "mum knows best" imo and never hesitate if in doubt with a child (I think I had a season ticket for the doctors when mine were young). I understand why you feel very angry I would too. You have come to the right place you will get lots of good advice from other Type 1s here. Mum guilt is always there no matter how old they get .. Take care of yourself and your daughter and I am sure that your daughter is going to get looked after very well with you as her mum - although it may not seem like it today everything is going to be ok - sending virtual hugs to you x

 

[Leeleexcx]

Thank you everyone, I appreciate your comments and advice.

I think I will make a complaint to my GP as I think she defo could have done more that day.

Relieved to know that the chance of DKA is low now she's receiving insulin, I've been really worried about that and hypos and watching her constantly...I guess that's normal just now though after such a fright. Daughter is taking it all her stride, isn't fazed by anything yet - she's a very laid back 12yr old to be honest and is super confident so I'm not worried about how she's handling it, but it's good to know that the way I'm feeling is normal x

 

[Daibell]

Hi Another poor GP. The GP could have done a glucose finger-prick test on the spot or sent you to the pharmacy for one. So many GPs don't understand diabetes but think they do. My GP did a urine stick test 15 years ago when a finger prick would have made more sense as I was very near DKA.

 

[TeddyTottie]

Thank you everyone, I appreciate your comments and advice.

I think I will make a complaint to my GP as I think she defo could have done more that day.

Relieved to know that the chance of DKA is low now she's receiving insulin, I've been really worried about that and hypos and watching her constantly...I guess that's normal just now though after such a fright. Daughter is taking it all her stride, isn't fazed by anything yet - she's a very laid back 12yr old to be honest and is super confident so I'm not worried about how she's handling it, but it's good to know that the way I'm feeling is normal x

Absolutely do make a complaint. Your daughter could have died. They must not be allowed to repeat this failure. The Practise Manager should be appalled and keen to do a lessons learnt from this.

 

[Resurgam]

We tend to believe GPs - but before things got too bad, you went with your instincts and headed for the hospital - you have nothing to blame yourself for.
Try to look on yourself as the hero of this little tale, not the baddie - saving the day by your good sense.
Your GP needs to be taken to task though.

 

[Robinredbreast]

Hi @Leeleexcx, I am so sorry to read about your daughter, my heart goes out to you and I understand how you are feeling. .

My little granddaughter was just 2 1/2 years old when she was diagnosed with Type 1 diabetes ( I also have it)
Similar story to yours. My daughter and I noticed my GD was tired, grumpy too, but being in the 2 year age, we put it down to that. But, my daughter was getting concerned so she took GD to her GP, told him of the symptoms and he said he needed a urine sample, GD was still in nappies but un-be-known to us then, she was getting seriously ill.
A couple of days after, they took her to the hospital and told the Dr of their concerns and that my daughter had talked to our GP about possible diabetes, this seemed to be dismissed and my daughter was told GD had a viral infection and they went home,
That night, mt GD's older sister awoke dad up to tell him that something was wrong with GD when he saw her, he bundled both into his works van and drove to A&E, like your daughter, my little GD was in HDU, with just a nappy on and tubes were coming out of her, breathing mask on, I'll never forget her little chest going up and down so fast, I still find it upsetting. If her dad hadn't of taken her to A&E during the night, I know she wouldn't of survived. I was so upset at first, grief stricken, then very angry with the indifference of the hospital Dr who nearly took away the life of my GD.

On a happier note, my GD is the same age as your daughter 12 and she is doing well. She is still a bit shy about her diabetes, but she coped well, mum and dad coped very well with it too, but I was the one who was a wreck at first.
Children are tough little cookies and I'm sure your daughter will top of her class in managing her diabetes, as it is just a small part of who she is.
Just to add, no one has done anything wrong, it's one of those things that happen, it's scary and can make the family anxious, but I'm sure she will live a healthy and a full life. Remember it's baby steps for you all. so take each day not as a challenge, but a learning day. I am still learning.
ps I used to look after my GD for day's and night's and even though I have type 1 myself I worried too, but try to keep calm, breathe and count to ten and remember she is still here.
Big (((((((( HUGS ))))))))) to you both and with my very best wishes xx

 

[Robinredbreast]

I feel strongly that Type 1 diabetes symptoms should be covered in the child's red health book. Un-diagnosed Type 1 is a potential killer !

This link is from 2015. 6 years ago !
https://www.diabetes.co.uk/blog/201...etes-symptoms-to-be-included-in-nhs-red-book/

 

[stillgoingstrong]

So sorry to hear of your experience. Same as my story when I nearly died 57 years ago and things have still not improved. I was rushed into hospital and my father had to turn up the next day to find out if I was still alive. No phones or blood tests in those days.
With blood testing meters on every GP desk these days I do not understand the mistakes in diabetic diagnoses.

You will go through all types of emotion and this is normal for any mum let alone one who has experienced this but make sure you move forward and help your daughter to become a master of control of her condition. Best of luck and remember there is plenty of help here

 

[Hopeful34]

Sorry you've had such a horrible time. My parents took me back and forth to the gp's when I was 2 (54 years ago) with typical diabetes symptoms and got told they were being neurotic parents. They went to talk to a sister that they knew who worked on the children's ward at the hospital, and she said to take me to the hospital immediately. I was admitted and diagnosed and my parents were told I was hours away from dying. Well done for following your instincts and getting the care for your daughter that she needed. Please don't feel guilty, you did the right thing. As others have said make a complaint to the doctors.