Author Topic: HELP!! 3 Year Old Grandson Just Diagnosed With Type1  (Read 2025 times)

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Offline Finlays Grandad

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HELP!! 3 Year Old Grandson Just Diagnosed With Type1
« on: 19 November 2013, 02:29:05 PM »
Hello

So many questions with so few answers. Why him/us? Why so young? Is there going to be a cure within his lifetime? What will that lifetime be? We feel as if we have been hit with a brick and that there is just going to be no end in sight to the way we feel.

Our 3 year old Grandson was diagnosed last week with type 1 Diabetes. He came home from hospital yesterday and his life is never going to be the same again.

Hospital staff all very supportive but ultimately it is now down to his Mum and Dad and us as Grandparents to see him through all of this.

Does any one know of support groups in the Leeds/Wakefield area where we could sit down with Parents or Grandparents in similar positions to us? 

I think we just need some reassurance that this isnt going to end his young life prematurely and that he will ultimately lead as normal life as possible albeit with a major inconvenience.

Thanks in advance for any help.

Offline nytquill17

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Re: HELP!! 3 Year Old Grandson Just Diagnosed With Type1
« Reply #1 on: 19 November 2013, 02:57:34 PM »
I'm not in the UK so will leave the local support group info to the others.

But if it's any consolation, there are shedloads of folks on this forum, and all over the internet, diagnosed as children or young adults and living long, healthy lives. Medical advances are such that diabetes really doesn't affect lifespan anymore, not in any meaningful way. It does change the life of the diabetic and of the family, sometimes in very profound ways, but at the same time it doesn't change anything. You can still go to school, hold a job, get married, have a family. There are diabetic Olympic atheletes, diabetic Everest climbers, diabetc Miss Americas! About the only things we can't do are drive some heavy vehicles and fly commercial jets. And that's because we're not allowed to, not because we're not able to!

I was diagnosed at age 10, now 28. Married for 8 years, moved to a different country, learned a new language, now taking a BA in that language, and will soon be undertaking a master's degree. We've got several members on here that have been diabetic for 30 years, 40 years, and more. How long has Richard157 been diagnosed? 60 years, isn't it? We also have a few members who are parents of diabetic children, hopefully you'll get a chance to talk with some of them. I know there are entire forums for parents/children also.

It's very hard at the beginning, very heavy and overwhelming. And it's more so with little ones who can't always tell you how they feel or whether something needs to be done. It does get easier, I promise! You're doing a great thing looking for others who are in the same situation as you. No one understands diabetes like other diabetics (or parenting a diabetic like other parents of diabetics). I spent many years in "diabetic isolation", and when I found this forum it was a godsend. So do seek out other people, it helps you have a better idea what's normal in the real world (as opposed to in the doctor's office - there can be a big difference sometimes) and thus helps you feel a little more sane. In addition to being a good source of information.

If there's anything we can help with, any questions you have, no matter how small, please do let us know.
T1 DX 1995
Levemir + Novorapid
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline Cora

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Re: HELP!! 3 Year Old Grandson Just Diagnosed With Type1
« Reply #2 on: 19 November 2013, 04:33:12 PM »
You've gotten good advice so far. I am also not in the UK, so no local support advice from me either. The bottom line with type 1 is that your grandson can accomplish whatever he sets his mind to in his life. Nothing will stop him. The one thing to be careful of (and I've seen this happen with friends) is to be careful to coddle and use the D as an excuse. Diabetes is a pain in the you-know-where, but not debilitating.

As far as life expectancy, modern studies suggest that the life expectancy today is quite similar for that of non-ds. The Joslin diabetes center in the US has a medalist program - for those T1s who have lived with the disease for 50 years or more. And believe me, there are a lot of them.

So try to relax a bit. It takes some work, but nothing will stop him.
Diagnosed type 1 1966
Dialysis 2001
Kidney transpant 2002
Pancreas transplant 2008

Offline sedge

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Re: HELP!! 3 Year Old Grandson Just Diagnosed With Type1
« Reply #3 on: 19 November 2013, 05:22:36 PM »
Hi Clive

I think Cora meant 'NOT to coddle and use D as an excuse' !  LOL

Welcome to DSF.  When I saw your user name my immediate thought was oh dear, is it Finlay or his granddad?  as I always feel more sorry for kids, cos I'm like that being not only a grandma but a great-grandma by now.   Still - you know the only good thing about it? - Type 1 diabetes is actually in some ways, a far less complicated condition than Type 2.

When I was diagnosed I was told it would knock 20 years off my life.  Now people are told (if they are told) 'maybe 10'.  Considering it isn't even 100 years yet since treatment by insulin injections was established, we really have come on in leaps and bounds - treatment bears very little resemblance now to what Nytquill and I amongst others experienced 30 and 40 years ago.  They learn something new every day about it, and there has been far more 'joined up' thinking about research worldwide since the advent of the internet.  So yes, though I'm still a tad cynical about a cure in MY lifetime - as I'm sure you will appreciate! - there is absolutely no reason to think that there can't be in Finlay's lifetime. 

Doesn't make it 'simple' though - and if ever anyone from a medic to a well-meaning (?) friend suggests it's 'easy' - then they clearly don't have a clue about diabetes - so ignore them!

First question - have you found our actual website?  It's not specific to children but it does contain useful info - click on 'Diabetes Info' on the top menu.

Diabetes UK (DUK)  have a lot of info on their website  -  http://www.diabetes.org.uk/     and more specifically for children there are two places - the Juvenile Diabetes Research Foundation (JDRF)  -  http://www.jdrf.org.uk/  and (would you believe? LOL) Children With Diabetes  -  http://www.childrenwithdiabetes.com/uk/   Shedloads of info and help!

None of these has an actual forum like this one though CWD have a mailing list - I think the members of CWD tend to also be members of JDRF, and of course both are more specifically child orientated. 

Plus there's an 'essential' book - Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas.   

NB I believe this has been revised - ISTR in 2012 - and I find it difficult to tell from Amazon which is the latest 'UK' edition.  So do check you get the most up to date one, and it is the UK edition as just to confuse everyone, we state blood glucose measurement in different units to the US and some of the rest of the world, and I expect you don't need to add any more confusion at the moment!

There certainly IS 'life with diabetes' - and my feet, eyes, kidneys and all other bits all agree with that statement!
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline kellyahayes

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Re: HELP!! 3 Year Old Grandson Just Diagnosed With Type1
« Reply #4 on: 19 November 2013, 05:35:08 PM »
Hi my daughter was DX age 3 now age 7 and is doing well. Once you get ur head around it it just becomes a way of life. If the parents use Facebook i recommend 2 groups " what mums and dads need to know to help children with type 1 diabetes" and "parents of children with type 1 diabetes in the uk". Such a wealth of knowledge with hundreds of families all over the uk. There is bound to be someone near you. Hope this helps x x x
Mum to T1 diabetic daughter diagnosed dec 2009 aged 3, now aged 6
Pumping novorapid since 12/3/2013

Offline Finlays Grandad

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Re: HELP!! 3 Year Old Grandson Just Diagnosed With Type1
« Reply #5 on: 19 November 2013, 09:16:02 PM »
Thanks so much for the help so far.

One of the problems is because he is so young, how do you recognise a 'Hypo' in someone that age? Particularly at nightime?

I have this massive fear that there will be an overnight hypo that wont wake him up and therefore we wont be alerted to it?

Kelly, how did you recognise these?

Offline kellyahayes

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Re: HELP!! 3 Year Old Grandson Just Diagnosed With Type1
« Reply #6 on: 19 November 2013, 09:25:44 PM »
Caitlyn only started to recognise hypos about 6 months ago. We relied alot on behavioural changes and appearance. She would become pale with dark circles around her eyes, tired, lazy, sometimes shaky. Night times we were never told to test overnight but take it upon myself to do so. Usually before i settle down then depending on that reading again around 2am. If she slips under 6mmol i give her some sugary juice. I recommend the little fruit shoots with the green lids, the blue lids are low sugar. Perfect for nighttime sipping!
Mum to T1 diabetic daughter diagnosed dec 2009 aged 3, now aged 6
Pumping novorapid since 12/3/2013

Offline Pattidevans

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Re: HELP!! 3 Year Old Grandson Just Diagnosed With Type1
« Reply #7 on: 19 November 2013, 09:28:04 PM »
Hiya Finlay's Grandad and welcome

Sorry I can't answer your question to Kelly... I'm sure she will be along soon to help you. 

I just wanted to say {{{{{{{{{{{HUGS}}}}}}}}}}} and to reassure you that management of Finlay's diabetes will get to be part of a normal day sooner than you would think.  The more you understand about the disease the easier it will be to get to grips with it.  Well done you for coming online.

Try the resources (Facebook groups etc) Sedge and Kelly have suggested and keep talking to us.  One of the things that will help Finlay is an insulin pump, but it needs some understanding before you embark on that.

Sorry, Kelly responded whilst I was typing  :)
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Finlays Grandad

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Re: HELP!! 3 Year Old Grandson Just Diagnosed With Type1
« Reply #8 on: 19 November 2013, 09:33:33 PM »
Thanks to you all so far. A great help and encouraging to know that we are not on our own.

Offline kellyahayes

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Re: HELP!! 3 Year Old Grandson Just Diagnosed With Type1
« Reply #9 on: 19 November 2013, 09:36:30 PM »
Its alot to get your head around but honestly once u get to grips Finley will be just fine. X
Mum to T1 diabetic daughter diagnosed dec 2009 aged 3, now aged 6
Pumping novorapid since 12/3/2013

Offline sedge

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Re: HELP!! 3 Year Old Grandson Just Diagnosed With Type1
« Reply #10 on: 19 November 2013, 11:28:56 PM »
I think most parents test during the night - it isn't obsessive so don't you dare worry about that.

Think once they are into a routine most test when the child goes to bed fairly obviously, then when they go to bed themselves then again about 2.30 to 3am, if you test low at any time, most meters beep at you after 15 minutes and tell you to test again to make sure the BG has gone up again.  It assumes you treated the hypo, so it's just a matter of being ready with whatever the chosen remedy is - and NOT over treating it!  (Very tempting that one whether you are 3 or 63 LOL)

It's not like immediately a life and death situation just cos the meter says eg 3.9 though!  Plenty of time to go to the kitchen and get whatever it is.  At 1.8 it is pretty URGENT!! - but I've tested at that in the past, gone into the kitchen, got my own Lucozade out of the cupboard and drunk it.  I don't recommend it frankly and of course by now I do have it pretty well organised and fixed in my brain what I need to do - but there usually is a decent enough breathing space between 3.9 and mad panic.
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4