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11 year old daughter just been diagnosed with type 1

L

Lorni

Member
Messages
17
Type of diabetes
Parent
Treatment type
Insulin
Hi all,

I'm currently sitting at my newly turned 11 year olds hospital bedside.
Over the past 10 days/2 weeks she has been drinking an awful lot, peeling during the night and has had rapid weight loss.
I phoned the GP yesterday, explained all of the above, she said the 1st app was Thursday at 1630, I phoned yesterday at 9am.
I phoned the childrens hospital and I asked to speak to a diabetic nurse, which I did. She said to ensure I have an app with the Dr before 12 noon or bring her up to A&E.
I phoned back the GP, explained all to receptionist and she said ill get the Dr to call you back in 1/2 hour. I waited 20 minutes and collected my daughter from school and took her to A&E.
they have her the finger prick test and her blood was at 33, I was told normal is 4-7 and I'm lucky I brought her in when I did.
After some tears and my daughter being a little pin cushion, we were told we have to stay in until Friday in order for them to balance her levels out.
I'm trying to be brave, inside I wish it was me and for it all to go away.
I am completely on my own, her father and I split when she was 3 and he rarely has anything to do with her, I phoned and told him and he said "thousands of people get diagnosed with that every day, you walk past hundreds in the street. It's no big deal. Contact me if it gets serious"
I can't even reply to that. His daughter, not an animal.
So, the 2 of us will be doing this on our own.
How did you all cope when 1st diagnosed?
I'm so scared I do something wrong or she ends up in a coma or something.
She's at the age she just wants to go out with her friends all the time, I'm worried she takes sweets off of kids as she normally would and it sends her into a bloody coma or something.
What questions should I be asking?
My head is all over the place.
 
Hi Lorni
My 16 year old daughter was diagnosed 6 weeks ago so I'm really new at this too. However, even in 6 weeks we have learned so much. Our pediatric team are amazing, with the patience of a saint. I know where you are coming from. Meg was drinking loads and had lost weight (about half a stone) which she didn't have top lose (size 8), the GP sent her for a routine blood test at 9am, by 2pm we were told to collect her from school and take her straight to hospital. Meg was lucky though, she was well in herself, and although her bloods were at 32 her Ketones were only 0.3. They let her home the day after, and she had one day off school. She has adapted amazingly, taking ownership and doing all her own injections, although emotionally she is all over the place. At 16 she is right in the middle of GCSEs and her Prom in in 3 weeks so this could not have happened at a worse time! It will get easier and this will just become our new Normal. It is sooooo hard though, as a Mum to see your baby go through this. Any time you want to rant, moan, cry etc. just get in touch and I'll listen...I'll probably join in! Take care and love to your daughter, she'll amaze you x
 
Tha
 
Hi Lorni,

My son was diagnosed in his teens twenty years ago. He coped tremendously well and his friends were and still are very supportive. I always wished that I could have diabetes instead of him. I even told him and his wife that I would hope to donate my pancreas to him if I died suddenly. However, my plans were thwarted when I was diagnosed in 2009 !
 
Hi thank you both so much for your help and guidance.
I'm going up the wall with worry, have spoken with the diabetes nurse and will speak with her again 2moro, Ellysse couldn't inject herself but I'm so proud of her. The nurse put the needle in her stomach but Ellysse pressed the pen and held it for the 10 seconds.
I really don't think I could do it, she's do brave xx
 
Oh wow Amber! So you now have it too.
None of my family or her fathers have anyone who has it.
Her father and I split up 7 or 8 years ago. Our relationship is extremely strained and we basically don't speak - his doing, not mine.
I phoned him yesterday and explained to him about her diagnosis, he said "thousands of people get diagnosed with that every day, you walk past hundreds of people in the street with it, it's no big deal. Contact me if it gets serious"
This is after me telling him she would be in until Friday. After me telling him that her bloods were 33, they should be between 4-7. He then hung up the phone.
He sees Ellysse, once in the past 3 years. He lives in Scotland, we live in England, however, Ellysse and I will be moving back to Scotland in August.
The diabetic nurse told me he MUST be trained before he is allowed to have her.
We are down here on our own.

Xx

 

Hello again,

When I was admitted to hospital the nurses asked me if I was shocked. I said that I was surprised but not shocked. Management was not difficult for me because I had watched my son for fifteen years. My son became my first port of call for advice. My hubby still doesn't fully understand and tends to think that an injection makes everything okay. At least he knows that if he finds me unconscious he must never inject me with insulin but to call for an ambulance. Yes, we had that coversation !

Your Ex certainly does need to know that it is a serious matter and needs his cooperation to help rather than hinder Ellysse with the control of diabetes. You can tell him from me that he is exaggerating somewhat with his statistics and his flippant comments were spiteful, hurtful and uncalled for. Hopefully, he will come to his senses and become the caring supportive father he should be.

There are several mums on here with children diagnosed with Type 1 that will be able to offer tips and advice.

Best wishes to you both,

A xx.
 
Thank you all so much.
It's good to know there are sights like this. I've allowed Ellysse to read some childrens stories about their diabetes.
She's now off to draw and paint, I'm left with my magazines, would love to just sleep, when I will be able to get that I'm unsure.
For now, I'm just glad she's ok. Xxx
 

Oh my word, you poor thing ,I'm so sorry to hear of your daughters diagnosis. How is she now, feeling a little better I hope. She is in the right place with the right care and support.
To have a child so critically ill ( I know because my darling granddaughter was 2 /12 when she was diagnosed) is so very frightening, scary and bewildering, it's like going in to shock mode. To comment on what your ex said, yes there are so many of us going about our daily lives and no one knows, but to say such off the cuff remarks like that, sounds so uncaring and flippant. Please try not to worry too much,she's in the right place and you know what, kids are tough cookies ( I have said this many a time) she will be a little trooper and I'm sure you will both get through this traumatic time, and be a great team together, it can take time.
Sending you both a BIG (((((((((((((( HUG)))))))))))))))) for a better and positive time ahead. Remember to take care of yourself as well. With my very best wishes to you both XX
There are children and parents on this forum who I'm sure will give lots of support and advice, remember you are not alone
 
Thank you very much Robin for your kind words xxx
 
Hi,

Reading your comment brings that 'diagnosis day' panic all back. My daughter was 9 when she was diagnosed with Type 1 diabetes in 2012.
It's a lot to take in right now for you but rest assured, as a parent you will learn quick and be an expert in no time. The diabetic team we had around us were amazing and still are, we communicate all the time still, and they are very supportive.
In time, diabetes will fit in with you and your daughters life, not your lives revolving around diabetes.
Stay strong : )


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Thank you xx I just want her to return to do the normal things she usually does and have no worries, sleepovers, out with friends, swimming etc. I'm not sure when things will return to "normal" or when ill feel happy she's ok, I guess I never will now xx
 
It will take time and a big learning curve for you both but there is no reason for her not to go back to leading a 'normal' life. There will obviously be some lifestyle changes and more preparation required before sleepovers, swimming etc., but as I said before, in time diabetes will work around you and your daughter not the other way around. My daughter copes well with her diabetes now, she swims regularly, has sleepovers, goes on guide camps, does Taekwondo...it doesn't stop her doing anything. We just need to be more prepared before events.
Its hard to accept just now but you both will in time and remember the diabetic team will always be there to offer support and advice.


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Things do get back to normal. My son is incredible. He knows what his blood sugar reading is just by how he feels. I will never stop looking out for him but I never question his control. I know he is discretely watching out for warning signs in his children, as am I.
 
Hi Lorni

Just to echo what everyone else says, really.

It's such a bloody shock when your most precious thing is diagnosed and the endless questions & scenarios that run through your head are all consuming.
I know exactly how you feel, but this site is great for a bit of empathy & sympathy and there's lots of clever, experienced people who are always ready to help answer questions & make suggestions.

We also don't know anyone else with a diabetic child, and our daughter is the only one with T1 in her school so it definitely feels lonely at times.

I know this doesn't help much now (it didn't for me when I was in your shoes) but it honestly gets easier.

Always feel free to send a message to me if you want to chat or offload - I'm always posting when I need help with trying to understand how it must feel for my daughter.

Chin up.

x


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I was 11 when I was diagnosed - so I can only really see it from what your daughter is going through.

Firstly, I'd love to say it's an easy journey - unfortunately, it's not - but it is made easier with the right mindset. The best advice I was given (well, technically, my mum was given) was that it is a manageable condition - and that it doesn't have to rule your life.

Encourage your daughter to own her diabetes - not to let it own her - it's a horrible, sucky condition but both of you will learn how to keep it in check.

Things will get a lit more normal once you're home and back in your own surroundings.

X
 
Thank you so much for all your replies.
We got home today. Ellysse managed to inject herself today! I'm so so proud of her, I'm so honoured to have her as my daughter.
The diabetic team have been fantastic and the nurse is just off the phone. The diabetic nurse is visiting us tomorrow and we have a meeting with her school set up for Monday at 9am as they want a care plan in place before she's allowed to return to school.
They've been so supportive and I'm so grateful for them xx
 
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