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Son newly diagnosed

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Emmamg

New Member
Relationship to Diabetes
Parent of person with diabetes
Hi everyone
My name is Emma and just over 2 weeks ago my 18 month old son was diagnosed with diabetes. He had been peeing and drinking a lot and we took him to the dr as my aunt is type 1 and I thought he might be too. His blood glucose was 32.6 and we were told to take hime straight to the sick kids hospital.
When we arrived at hospital they did a blood gas and ketone reading and discovered he had DKA so he was moved to HDU where he spent 2 days on iv insulin and fluids before being moved to a different ward.
He was really unwell but gradually started getting better. My daughter got chicken pox at the same time so he had to be isolated from the other children and he also kept having hypo's which was a bit scary but we got home after a few days.
We have now been home for 11 days and I am constantly terrified. He has had 2 hypo's at home and we are constantly having to tweak his insulin (on the advice of the consultant or dietician) to try and resolve this. He is also really hungry and we are finding it hard to keep him full!
On the plus side, he has loads more energy now and is getting back to his old happy toddler self.
I know it takes time to get used to the routines and carb-counting etc but we are finding it really tough at the moment and are exhausted. We are getting amazing support from the hospital/diabetes nurses but there is always this constant fear that something will go wrong.
Any advice or shared experiences would be very gratefully received .
Many thanks
Emma
 
Hi emma welcome to the forum...sorry to hear your news but you have come to a good place we have many parents on here who im sure will be on to advise you soon x in the meantime have a good look around and remember no question is regarded silly here x🙂
 
Hi Emma, welcome to the forum 🙂 So sorry to hear of your little one's diagnosis, it must have been very frightening for you all. You are bound to be exhausted with all the flood of information you are getting and trying to do everything right - everything happens so quickly and you have to get used to it before you've even had time to think of what has happened and the implications.

There are lots of lovely parents here who will do their best to help. I'd recommend joining the Children with Diabetes website, and also getting a copy of Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas - known as the Type 1 'bible'. You can also get a free children's pack from JDRF with a Rufus bear : http://www.jdrf.org.uk/page.asp?sect...onTitle=KIDSAC

What insulin regime is he on? Please ask anything you are concerned about or unsure of - no question is considered 'silly'!
 
Thanks for the lovely welcome.
At the moment he is on Levemir twice a day (v low dose at night) and novorapid 3 times a day. We are still trying to get used to the dose/injection giving thing. THis morning I gave him too much Levemir thinking it was the Novorapid so we are expecting a hypo tonight - I won't be doing that again!

Thanks for the links, I will definitely get the book as reading about the condition is helping.

Also, does anyone have any recommendations for id bracelets? I have looked at MedicAlert but is it worth the annual fee?

Thanks again
Emma
 
It's good that he is on multiple injections (also called MDI or basal/bolus) as it is the most flexible injectione regime. Sometimes people are started on mixed insulins which means fewer injections but a much more rigid routine for eating the right food at the right time. I'm on lantus and novorapid and even though we are miles apart in age (I was 49 when diagnosed!) I can relate to a lot of how you describe him! I had DKA too, but once I got the insulin I felt sooooo much better and I was absolutely ravenous for months!

I hope he doesn't have a hypo after the mix up. It's happened to most of us at one time or another and whilst it's not the best way to learn a lesson, it does tend to stick in the mind!

I'm not sure about ID bracelets - I don't have one myself but I know many others have. I'll scout around for some previous discussions on the topic and post them here for you 🙂
 
Hello Emma from another newbie parent. Just wanted to say I sympathise so much with those feelings of fear and exhaustion! My son was diagnosed in the middle of March and for at least 6 weeks I felt constantly anxious that something awful would happen. I was (and still am) very sad about the diagnosis too :(
BUT it does get better as you become more confident and you will find that you can relax a bit and even think about something else occasionally! Everyone says how resilient children are and that really does seem to be true. I suppose they live more for the day while we are worrying about the future!
Very soon you'll be doing all this automatically and become experts at managing your son's diabetes. As an older boy (14) my son is supposed to be pretty much in charge, except that he is a typical teenager as you'll see from another post I am about to put up!
Keep smiling!
 
Hi there,
Very sorry to hear about your little boy! My daughter was dx at 20 months, very similar to yours, DKA and in high dependency, on IVs etc. She is now 2yrs and 8 months. She too was hungry all the time the first week or so after getting home, the DSN said it was the insulin giving her an appetite ?

It is incredibly hard, you have just had to deal with the trauma of him being incredibly ill and in HDU and then you have to start to get your head around adjusting to this new life, being incredibly organised, the effect it has on all your family and the anxiety around how they and you all will manage. The fear of hypos and hypers. It is good to hear you have a supportive team. It is a huge learning curve. You will gain confidence in managing this, and find a balance. My sadness, however, remains.

It took a few weeks for Ms blood sugars to settle down, then we began to reduce her insulin as she began her honeymoon period. We went onto a pump 3 months after her dx. We have some challenging times but on the whole I think we are doing reasonably well, it helps to have some good books to refer to at home. This forum is also a good support, you need to know you are not alone in what you are experiencing !

Thinking of you 🙂
 
Hi Emma and a warm welcome to the forum
 
Welcome to the forums Emma 🙂
 
Emmamg said:
Hi everyone
My name is Emma and just over 2 weeks ago my 18 month old son was diagnosed with diabetes. He had been peeing and drinking a lot and we took him to the dr as my aunt is type 1 and I thought he might be too. His blood glucose was 32.6 and we were told to take hime straight to the sick kids hospital.
When we arrived at hospital they did a blood gas and ketone reading and discovered he had DKA so he was moved to HDU where he spent 2 days on iv insulin and fluids before being moved to a different ward.
He was really unwell but gradually started getting better. My daughter got chicken pox at the same time so he had to be isolated from the other children and he also kept having hypo's which was a bit scary but we got home after a few days.
We have now been home for 11 days and I am constantly terrified. He has had 2 hypo's at home and we are constantly having to tweak his insulin (on the advice of the consultant or dietician) to try and resolve this. He is also really hungry and we are finding it hard to keep him full!
On the plus side, he has loads more energy now and is getting back to his old happy toddler self.
I know it takes time to get used to the routines and carb-counting etc but we are finding it really tough at the moment and are exhausted. We are getting amazing support from the hospital/diabetes nurses but there is always this constant fear that something will go wrong.
Any advice or shared experiences would be very gratefully received .
Many thanks
Emma
Click to expand...

Dear Emma So sorry to read your thread, I know how you feel. My little grandaughter, Grace age 2 1/2, was diagnosed on June 1st. Her reading was 47 with DKA and she was in the HDU. It is so scary and I cried so much seeing her lying there with tubes, lines and an oxygen mask on.
She has been so good with finger pricking and the injections. It is such a shock but like you, she did and still has lots of support and care.
The members on here were absolulute stars and helped me and my family through it. There are lots of parents on here that will give you lots of support and advice.
What insulin is he on?, Grace is on Humilin and has a pen which administers 1/2 doses. I can't believe what tough little cookies these children are and they are a credit to us all.
You are doing really well Emma, it's still very early days. Shiv, a member, is a great help with youngsters with Diabetes and also Rufus Bear :D

Good luck and warmest wishes to you and little boy. Sheena
ps My daughter, 10, not Diabetic, has just got over her 2nd bout of C Pox.
 
Thanks again everyone, it is nice to know that there are people who are going/have gone through what we are going through.
I think Willsmum and Hanmillmum have hit it on the head when mentioning the sadness one feels. I am gutted that I cannot fix him, that this will be his life and routine forever. It doesn't help that a lot of people say to us 'but he will grow out of it won't he?' and we then have to explain that he won't. And then we also have to explain the difference between type 1 and type 2 to them and that no amout of restrictive diet is going to make his pancreas produce insulin!
I am in a good place in as much as I knew quite a lot about type 1 diabetes with my aunt having it so she is around to ask questions to but it is still hard. Logically I do know that none of this is our fault, that it was going to happen at some point but I hate that I didn't know sooner, that he had to get so ill before getting better.
We didn't have a hypo last night but he did have one just before lunch today. I know we will get used to it over time but a part of me panics and wonders what should I do?
He is happy and lively now and no sign of chicken pox thank god - hopefully our daughter has had it bad enough to avoid a second dose - that must be a nightmare!
I hope everyone is well and I look forward to getting to know everyone better! Thanks again for the links. We do have a Rufus bear but he hates him at the moment, maybe he will come round to him soon!
 
Awwww! How could you hate Rufus? :D Some of those things you said like he'll grow out of it we hear so many times - there is so much the general public doesn't really understand about diabetes, but everyone is an expert 🙄
 
Hi Emma,

Welcome to the forum - although sorry you have to be here. My son is now 13 and was diagnosed when he was 10 and I know how it feels - but I promise you that you will start to get to grips with it all and it will become like a 'natural' part of your routine. Diabetes is not 'easy' and takes a lot of effort - but you will be able to do it. You have to get on with things because you dont have a choice - but things do get better. You are still feeling 'raw' and angry and all the feelings that a diagnosis like this brings - but dont despair - your baby boy is still the same baby boy and you will love him just as much, if not more - and he will learn to live with diabetes and so will you. Do join the childrens forum Northerner mentioned as there are hundreds of us on there and you may find that some people are from your area and might like to meet up for a chat and let the children play.🙂Bev
 
Thanks again folks.
I have looked at the children with diabetes site and have subscribed to a couple of mailing lists but think I am being a bit dim - is there actually a forum section as such or does it all get done via the mailing lists?
Cheers
Emma
 
Emmamg said:
Thanks again folks.
I have looked at the children with diabetes site and have subscribed to a couple of mailing lists but think I am being a bit dim - is there actually a forum section as such or does it all get done via the mailing lists?
Cheers
Emma
Click to expand...

Hi Emma,

Your not being dim - it is a mailing list. There was a forum but little used I think. Once you get used to the mailing list you will be fine - you could set up another email address if you are worried about getting so many emails. Come and say hi.🙂Bev
 
Emmamg said:
Thanks again folks.
I have looked at the children with diabetes site and have subscribed to a couple of mailing lists but think I am being a bit dim - is there actually a forum section as such or does it all get done via the mailing lists?
Cheers
Emma
Click to expand...

Hi Emma, I think it is horses for courses - some people prefer using the email list, some prefer the forum approach and some use both! A lot of the parents there also post here so you can have the best of both worlds 🙂
 
Children with diabetes mailing list

I wonder if I'm doing something wrong with the list ... thought I had subscribed but I only seem to get messages occasionally. Does everyone else have a full inbox? Thanks, Catherine
 
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