So worried

Healthy41

New Member
Relationship to Diabetes
Parent
My son was newly diagnosed last Monday with type 1. We came out of hospital on Friday night so this is our first weekend home. I’m so worried I might do something wrong and feeling really nervous for the future.
 

Docb

Moderator
Relationship to Diabetes
Type 2
Its way out from any experience I have had but just about every parent of a newly diagnosed off-spring feels the same as you if the reports of forum members are anything to go by. So, take a deep breath, read around the forum and ask questions about anything you don't understand. Somebody who has been where you are now will be along quickly to help.
 

Thebearcametoo

Well-Known Member
Relationship to Diabetes
Parent
Hi and welcome. The first few weeks are a lot to cope with but you will get the hang of it all.
How old is your son?

Have you been given contact details for your team’s out of hours etc? I’m presuming he’s a child and so under paediatric services (we do have parents of adult children posting sometimes so apologies if he’s grown up). We were told that we could call our local children’s ward in the middle of the night if we needed to (we never did but it was good to know there was a safety net).

You’ll have had a lot of information and you will get that information again several times so you take it all on board. It may help to get Ragnar Hanas book Type 1 diabetes in children and young adults (make sure it’s the latest edition). It’s an encyclopaedia of information about Type 1 and good for reminding yourself of the basics or for learning more deeply. It’s not the sort of book you read cover to cover but we found it helpful in the beginning.

My daughter (now 10) was diagnosed 18 months ago and it just feels like normal life now. She’s fit and healthy and doing everything she was doing before her diagnosis. We as parents are less anxious than we were those first few months and we’ve all adjusted.

We’re here to support you in whatever way you need. It’s ok to go through a grieving process for the childhood you had assumed he would have. There will be ups and downs. Diabetes is very in the moment and if he’s high you can treat him, if he’s low you can treat him (and you will have plenty of both). If there are specific things you’re worried about we can help either with info or signposting you to the answer or telling you to call your team. If it’s general ‘oh hell I am not prepared for this’ then we’re here as a space while you work through that.
 

Healthy41

New Member
Relationship to Diabetes
Parent
Hi and welcome. The first few weeks are a lot to cope with but you will get the hang of it all.
How old is your son?

Have you been given contact details for your team’s out of hours etc? I’m presuming he’s a child and so under paediatric services (we do have parents of adult children posting sometimes so apologies if he’s grown up). We were told that we could call our local children’s ward in the middle of the night if we needed to (we never did but it was good to know there was a safety net).

You’ll have had a lot of information and you will get that information again several times so you take it all on board. It may help to get Ragnar Hanas book Type 1 diabetes in children and young adults (make sure it’s the latest edition). It’s an encyclopaedia of information about Type 1 and good for reminding yourself of the basics or for learning more deeply. It’s not the sort of book you read cover to cover but we found it helpful in the beginning.

My daughter (now 10) was diagnosed 18 months ago and it just feels like normal life now. She’s fit and healthy and doing everything she was doing before her diagnosis. We as parents are less anxious than we were those first few months and we’ve all adjusted.

We’re here to support you in whatever way you need. It’s ok to go through a grieving process for the childhood you had assumed he would have. There will be ups and downs. Diabetes is very in the moment and if he’s high you can treat him, if he’s low you can treat him (and you will have plenty of both). If there are specific things you’re worried about we can help either with info or signposting you to the answer or telling you to call your team. If it’s general ‘oh hell I am not prepared for this’ then we’re here as a space while you work through that.
Thank you for your reply.
My son has just turned 15. So on the older end. I hadn’t a clue he was so poorly apart from the amount of weight loss. I honestly thought he was developing and eating disorder as he didn’t want to eat saying he felt sick all the time and sleeping. Now yes I see it was a sign. I had taken him to the doctor a week before who had arranged bloods and ecg for a few weeks time. Thank goodness he was acting odd and thinking morning was the afternoon and very sleepy I called 111. Still them they said it was minor so went to our local minor injuries unit. I explained the symptoms and I had concern as I had read up on type1. It doesn’t run in our family so it wasn’t genetics. They tested and said he was extremely ill and the ambulance will be here in 12 minutes. I was completely floored. We spent a week in hospital but now home. Couldn’t wait to get home but then I realised I’m on my own. He went into a hyper 18.9 the first night and ketones was 1.8 so I called the ward. I was told by a nurse the doctors are too busy but I will jot it down. Nobody called me back. I felt I couldn’t call back as I felt a nuisance so sat up all night till morning crying and checking he was still alive. I called the diabetic team in the morning and explained I thought he needed a corrector and they was so lovely. They changed his insulin levels. So far a few ups and downs but it’s to be expected. I think the ward call really threw me to the lions and has now made me feel I have no faith in them for the evening. My son is very laid back about it typical teen, he laughs and said mum make it our friend not our enemy. He is so right but being a mum.... well you know how much we worry. Trying not to show it is so hard. I will go to the bathroom for a little cry. I know it will become second nature and I can’t wait for that to happen. It’s so kind of everyone on her to reply to me as I don’t have much support at home or anyone to off load on them wobble days. X
 

Thebearcametoo

Well-Known Member
Relationship to Diabetes
Parent
Never worry about phoning the ward back if you need to. They are busy but will get to you if you need them. What are your diabetes teams out of hours? Ours is until 11pm and we can text after that if we need and may or may not get a response.

When you have ketones the body will use insulin to deal with that before bringing the glucose levels down so you may find you need a lot of insulin - your team will give you ‘sick day rules’ that include what to do with ketones. Within a week of coming out of hospital (while my husband was away) my daughter developed a fever and I had a weekend of fire fighting. It was a baptism of fire but actually has made me more confident in my ability to cope. You may look back at this in a similar way.

It’s hard to begin with. Let the tears flow. I’m glad your son is dealing with it well.
 

everydayupsanddowns

Administrator
Staff member
Relationship to Diabetes
Type 1
Welcome to the forum @Healthy41

Sorry to read your heartbreaking account, and about your son’s diagnosis.

@Sally71 @stephknits and @Bronco Billy are other frequent parent posters to compare notes with.

You might find some useful hints and tips in Adrienne’s thread for parents and also Ragnar Hanas’s Type 1 Diabetes book is frequently recommended as a hugely helpful and informative read.

Digibete is a video library with lots of really useful and helpful content too - https://www.digibete.org/

It is completely unsurprising that you feel tearful and overwhelmed at times - some people liken adjusting to a type 1 diagnosis (either your own or that of a child) as akin to grieving.

Keep asking questions, and let us know how you are getting on
 

stephknits

Well-Known Member
Relationship to Diabetes
Type 1
hey and welcome to the forum. I have a 16 year old daughter who was diagnosed on 1st May and can remember so well the feelings you have described. I had it much easier in a way, as I also have type 1, so we knew the signs straight away, were able to test her blood sugars at home and then go to A&E. Still didn't stop me feeling absolutely devastated for her and guilty. Alongside all these emotions, there is such a lot of information to take on board and loads to learn. Your DSN team will (hopefully) get this and be kind and patient, but sometimes other members of the hospital staff can forget what it is like to be newly at home and not sure what to do. I was lucky and already a member of this great forum and when she was taken from A&E to the acute assessment ward at 2 am and I wasn't allowed to go with her I sat in the corridor crying and reached out to the forum. The support here has been amazing. Whilst I theoretically know what I am doing, it is a very different feeling being a parent and my daughter is on injections whilst I am on a pump, so had to dredge my memory a bit!
Sounds like your son is doing really well. I hope the school will be helpful and understanding. Let us know how you get on. :)
 

Bronco Billy

Moderator
Relationship to Diabetes
Parent
Hi Healthy41. Your experience sounds very similar to ours. Our daughter was showing symptoms of type 1, but the GP didn’t seem to recognise them and asked us to take her to hospital for a blood test. Not being aware of the seriousness of her condition, we took her the next day. Two hours later, an ambulance was taking her to hospital in a life-threatening condition.

Everything you are going through now is very common and very natural, so don’t give yourself a hard time about it. Your son’s attitude is fantastic and very commendable. take a lead from him. I know it doesn’t seem like it will at the moment, but dealing with the condition will become easier. Every day, you have learnt more and are more experienced, even if it doesn’t feel like it. That will build and, eventually, everything that feels difficult, stressful and takes a lot of thinking about now will become second nature.

Erratic blood sugars are quite normal in the early stages of diagnosis. It can take a while for the body to settle down and to find the right ratios, especially if his pancreas is still producing some insulin. It’s easy to feel you are being a nuisance when you ring the hospital, but never, ever feel like that! If you need advice, ask for it! Chances are, the feeling of being a nuisance is just that, a feeling. I doubt the staff feel like that.

Keep your chin up! You’re doing great!
 

trophywench

Well-Known Member
Relationship to Diabetes
Type 1
Your son is 100% correct - it is far far better to make your own diabetes your friend. OK - a friend nobody ever wanted to make, but there again once you get to know it better it'll become friendlier. Need to be wary of it to begin with, cos if you don't make the effort to always stay on the right side of it, it can be very spiteful indeed.

Once you get used to the rules it imposes on you - it becomes less of a effort. I know you find that hard to believe right now - we all did to begin with - but here most of us still are many years later, in many cases with no D complications. Alive and kicking, albeit aged 70, so not kicking quite as hard as we could when we were 22! (though definitely wearing lower heeled shoes these days LOL)

Good luck to you both - and {{{Hugs}}}
 
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