Hello, Parent to a type 1 diabetic

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LittleMagik

LittleMagik

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Hello my name is Kizza
i am 20 years old
I have a son who is 19 months old who is a type 1 diabetic.

When my son was first diagnosed he was in a very bad state, he was going through DKA and slowly slipping into a diabetic coma, it took the doctors and hour and a half to figure this out.
He was then transferred to a intensive care unit in another city he spent 2 days there and was well enough to be transferred back to my local hospital.
In total he was in hospital for 8 and a half days.

At first i thought i would be able to cope as i have grown up in a diabetic background as my mum is a type 1 diabetic.

It has been 4 months since he was diagnosed and his blood sugar is still all over the place.
He had two fits in one day due to his blood sugar suddenly dropping.

This has been extremely stressful for me and i feel as if i am going through depression.

I guess i joined this site for comfort and support.
 
Hi Kizza, welcome to the forum 🙂 I'm really sorry to hear about your son's diagnosis - can't imagine how difficult it must have been for you, and still is :( I was diagnosed after going into hospital with DKA and was also in for 8 days, so although I was much older than him, I can imagine some of what he went through.

What insulin regime is he on? We have lots of parents here, some of whom have children who were diagnosed at a similar age and I am sure they will do whatever they can to answer your questions and concerns. Have a look in the Useful links thread for some good links to information and help - you might be interested in also joining the Children with Diabetes site which is full of information and supportive parents who understand what you are going through. Also, I would highly recommend Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas. It will explain everything you need to know about living with Type 1. Well, maybe not everything, but for those things it doesn't, you have us! 🙂

Please ask anything at all that may be concerning you. It must be particularly difficult with such a young child, but the good news is that treatments are so much better than they used to be and are improving all the time.
 
Hi Kizza and welcome to the forums.

Oh dear, you and your little one have been having a bad time haven't you. Although I have 3 grown up children and a 3 year old grandson I don't have any experience of bringing up a child with Type 1 myself. There are some amazing parents on here who have though. I'm sure some of them will be along soon and will be able to offer you support and advice. In any case, your little boy has now got a bucket load of new 'aunties and uncles' fighting his corner. Ask anything you need to know, rant if you need to. We'll listen, sympathise and advise if we can. XXXXX
 
Thank you 🙂
 
welcome to the forum reading trough it remind me when my boy was diagnosed but your baby is even younger i bet you you are in a shock although your mum is type 1 i have a friend whos baby was diagnosed at 18 months good luck and at least you know more then parents that they never had any experience of diabetes
 
LittleMagik said:
Hello my name is Kizza
i am 20 years old
I have a son who is 19 months old who is a type 1 diabetic.

When my son was first diagnosed he was in a very bad state, he was going through DKA and slowly slipping into a diabetic coma, it took the doctors and hour and a half to figure this out.
He was then transferred to a intensive care unit in another city he spent 2 days there and was well enough to be transferred back to my local hospital.
In total he was in hospital for 8 and a half days.

At first i thought i would be able to cope as i have grown up in a diabetic background as my mum is a type 1 diabetic.

It has been 4 months since he was diagnosed and his blood sugar is still all over the place.
He had two fits in one day due to his blood sugar suddenly dropping.

This has been extremely stressful for me and i feel as if i am going through depression.

I guess i joined this site for comfort and support.
Click to expand...

Welcome Kizza, I understand why you need comfort and support, it's a horrible thing to go to. My little grandaughter Grace was diagnosed on June 1st 2011, she was 2 1/2, in hospital in the High dependency unit, wires, lines coming out of everywhere and an oxygen mask on, It still haunts me:(
Grace is doing well and goes from strenght to strenght. I think the majority of people diagnosed with Type 1 are rushed to hospital, me included, but when it is a child, there are no words that can describe that devastating experience. I hope like Grace and the number of children on here, he goes from strenght to strenght and will , one day, take it all in his stride ( as kids can do, so well). There are lots of parents on here, who will be able to give you some practical support and advice. Take care and a ((((((()))))))) for liitle 'un. Best wishes Sheena
 
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Thank you 🙂
 
Hi kizza. Welcome 🙂

It must be terrifying for you. It sounds like you've been largely left to sope with it without much backup.

I hope we can help you with some of the problems and just give you a place to come and talk out your worries.

And hopefully get some advice about getting the aftercare you really need.🙂

Rob
 
Thank you 🙂
 
Hi Kizza and welcome to the forum- it sounds like things have been really hard for you. Do you have a DSN who you can talk to about the problems with your little ones Diabetes.

I hope you take a look at the link Alan posted for children with diabetes - you might find some parents near you - who could become part of a support network for you.

If you feel that the stress of dealing with things is becoming too much - have a chat with your GP, who may be able to put you in contact with local support groups.
 
Welcome to the forum Kizza and Jaiden 🙂
 
Welcome to the forums Kizza 🙂
 
Hi Kizza, My daugther was diagnosed at 12 years old so I am unable to imagine what it must be like with such a tot. My daughter has experenced many suddend drops in blood sugar though and so I can really sympathise with this. I have had her fitting on the bathroom floor, falling unconscious whilst I was driving down a dual carriageway, once she was unconscious 4 times in one weekend.
I am not surprised you are feeling depressed, I felt I was on high alert the whole time and it is absolutely draining. You wonder when it is ever going to end, to add to the torment for me Kate decided she did not want to go on living the way she was and would be better off dead.
We lived like this for approx 10 months and then things suddenly picked up. Her consultant was brilliant and we tried all sorts of things to try and stabilise her. She started using a pump which although helped did not stop the sudden drops. In the end her insulin was changed to Humalog and this seemed to really help. We will never really know what was going on with her, whether she just grew out of it of if it was the change of insulin but we are now nearly 6 months on and things are so much better.
No matter how difficult things are right now there is always hope.
From a practical point of you does has your little boy been offeredd continuous glucose monitoring? I presume he uses an insulin pump?
 
Hi Kizza welcome to the forum,

Have you been in touch with Children With Diabetes UK, they are an advocacy group full of mums from all over the country (and a few dads! 🙂 ) who have children with type 1, they keep in touch by email and lean on each other for support, understanding, advice etc. They are the best resource you can really have, they are lovely.
 
Glad things have picked up for you and your little girl
My son is on novo pens during the day then before bed he has glargine.

Me and the diabetic nurse are changing his ratios quite a bit recently.
The diabetic nurse i find can be very useless, as whenever i feel something is wrong i call her up never answers her phone.
It's quite hard to keep in contact with her.
My son was having check ups at the hospital every month but now i'm having to wait until mid December for his next check up.

The only glucose monitoring that is done is by me by pricking his finger before each meal and before bed.
 
Hi shiv, no i haven't i think i'll go and have a look at that today, thank you
 
Hi Kizza, just popped in to say hello and welcome. You are having a tough time with little one, and apart from the diabetes help you will find on here, just talking to others I found, a great help.🙂
 
Kizza, My understanding is that with a child so young you would be able to use an insulin pump if you wished (as they get older and with adults you have to meet certain criteria because they are very expensive). It is the best thing we ever did, apart from anything else during a hypo period you can just switch it off where as the glargine would still be in his system lowering his blood sugar for nearly 24 hours so if he is hypoing it will just make it much worse. If you continue to struggle with control so much it might be worth considering, insulin levels can be much more finely tuned to his needs with the pump and basal rates can be changed much more safely and with more flexibility. Some pumps even have continuous glucose montioring which work along side them. Our local hospital refused to even condsder Kate for a pump, our local consultant blamed Kate for deliberately causing the hypos and then when that was ruled out I became under suspicion - charming!! My GP referred us to a much bigger hospital who had seen a case like Kate's before and since then we have never looked back.
Has he only just started having the sudden drops or is it something that has been happening since he was diagnosed?
How do you cope at night Kizza, does he tend to be stable through the night or are you up checking him?
 
Hi and welcome to the forum!

Sorry to hear your son is having bad hypos and struggling with control, you certainly have good grounds there for a pump. My daughter has tiny amounts of insulin which wouldn't be possible by pens, the pump allows for this and gives us much more flexibility and control over her BGs, that is not to say it can be hard work too.
Shame as well your DSN not being supportive when you need it. Are you restricted to hospitals for his care?

TC and keep posting 🙂
 
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