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Advice Please

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
N

NannyFacetime

New Member
Relationship to Diabetes
Type 1
On behalf of my daughter:

Hello,

I am looking for some advice please. My two year old son was diagnosed with type one 12 days ago and we were discharged from hospital Friday. Since then I have been sleeping on the floor in his room as I am petrified of absolutely everything and, I think, still in the grieving phase of his diagnosis (being 32 weeks pregnant probably isn’t helping with the emotions either!!)

Can anyone share their stories and what they did to overcome their anxieties please?

Thank you xxx
 
Welcome to the forum. First of all, being scared and overwhelmed is absolutely natural. There is so much to take in, but you will get there. This is also a time to concentrate on you - especially with the new baby coming. Perhaps you could look at getting some sort of continuous glucose monitoring system. You can get ones that work with your phone to alarm if your son goes low. The dexcom certainly does this, although is not cheap.
Another great thing is coming on here. There are parents who know how you feel and can offer advice and support, there are loads of type 1s who live great lives and so you can slowly see that your son can and will be fine and happy.
Be kind to yourself and keep talking
 
It is a lot to take in when first diagnosed, and a very steep learning curve.

One book that I would recommend is Type 1 Diabetes in Children, Adolescents and Young Adults, by Ragnar Hanas. It is very clear, easy to understand, and regularly updated, so worth getting the latest edition. 11 years in I still find it useful. It is well indexed so easy to use whenever I need that specific piece of info.

As Phoebe says, don’t forget to take care of yourself as well. Use the specialist team at the hospital, that is what they are there for. They will take you through things step by step and help you and your son get sorted in managing this. I know it probably feels hard to believe at present but things that seem very difficult at present will just become part of your new normal life. ( I liken it to learning to drive. When I started I thought it was complicated to look in the mirror, change gear, ... Now that is just automatic)

Take care and keep in touch.
 
Firstly - so sorry that your son has been diagnosed with Type 1. My son was diagnosed at 10 months nearly 15 years ago so I know all about the shock and anxiety that you feel. It may seem overwhelming at first but it will get easier as you learn more about T1 and gain confidence in supporting your son. A really valuable resource of so much knowledge, kindness and support is the UK Children with Diabetes Advocacy Group (UK CWD AG) on Facebook. It is a closed and monitored group for parents and carers of T1 children. It really is amazingly supportive and there's always someone who will respond to your queries and worries - even at 3am posts go up and are replied to. I think being part of a community of people who have been there and "get it" is really important especially at the beginning when you will have so many questions. Use your healthcare support and DUK obviously but the group is a huge support to help aleviate fears and to answer that question you might feel stupid asking but believe me we've all thought about it or asked it ourselves.
Take care of you and your little one x
 
NannyFacetime said:
On behalf of my daughter:

Hello,

I am looking for some advice please. My two year old son was diagnosed with type one 12 days ago and we were discharged from hospital Friday. Since then I have been sleeping on the floor in his room as I am petrified of absolutely everything and, I think, still in the grieving phase of his diagnosis (being 32 weeks pregnant probably isn’t helping with the emotions either!!)

Can anyone share their stories and what they did to overcome their anxieties please?

Thank you xxx
Click to expand...
Hi there Im pretty new to T1D too and I'm also 34 weeks pregnant and not sleeping at all this place is amazing and lots of great advice from parents too personally I'm still petrified and ur not alone. Do what makes u feel comfortable and take ur time to overcome any fears. Has anyone else got type 1 in ur family and do u get support from any family/partner.
I'm really struggling with the cooking side of the diabetes as I'm finding it so hard to stand and worried if i go into labour what will happen to my daughter I hope u got some sort of support in place and please don't hesitate to post anything on here.
Has ur hospital mentioned about the pump yet? usually they say u have to master the injection and carb counting first Im guessing same for u?
I can say don't worry but I won't because its not possible I am a newbie to all this but if u want to speak on the emotional side for support i am here I can suggest @Bronco Billy and @trophywench they have been my biggest support here too x
 
Glad to hear all is going fine 🙂 how did they get u onto the pump so quickly my three year old is still on injections and they won't let us on the pump yet. Which hospital are u with?
 
He’s with Addenbrookes. Not 100% certain why he went straight to pump (I’m nanny not mum). His mum diagnosed and took him straight there as it’s their local hospital. I’ve been reading lots about the pump lottery it seems so unfair.
 
The pump lottery is unfair, I agree. There isn’t a national policy, each CCG decides which pumps it wants to offer and the criteria for offering them. It’s quite rare to be given a pump this soon after diagnosis as the medical teams usually want parents to know how to work out insulin doses etc before issuing one. Which pump does he have?
 
My two have that pump. It's great!
 
I'm a bit skeptical about a pump as the Dr at the clinic said there's a higher risk of dka the younger they are? I've also read this online on a couple of sites don't know whether it was just said to keep us off the pump or it is actually true?
 
I can’t comment on specifics for children on pumps, but for anyone on a pump there is a higher chance of DKA than when using insulin pens, only because if the pump fails then we have no background insulin running to fall back on. However the flexibility and finer adjustments make the pump much more effective than MDI as you can adjust it to your needs on an hourly basis. We just have to keep a watch on things.
 
While SB2015 is right, there is a higher risk of DKA through pump failure, the increased flexibility for control far outweighs this risk. Yes, my two have both gone high when a cannula has come out, but it has been spotted before reaching DKA levels. If testing is happening as regularly as it should, high BGs can be spotted before DKA occurs. It takes time to reach the high level necessary for DKA, it doesn’t tend to happen within a couple of hours.

Don’t let this possibility put you off having a pump. When on injections, background insulin is fixed and can only be changed with another injection. On a pump, an increased background insulin dose can be applied to deal with a high. It can also be adjusted to help fight off a severe hypo by reducing background insulin. You can’t do this with injections as what is in the body can’t be changed.
 
NannyFacetime said:
On behalf of my daughter:

Hello,

I am looking for some advice please. My two year old son was diagnosed with type one 12 days ago and we were discharged from hospital Friday. Since then I have been sleeping on the floor in his room as I am petrified of absolutely everything and, I think, still in the grieving phase of his diagnosis (being 32 weeks pregnant probably isn’t helping with the emotions either!!)

Can anyone share their stories and what they did to overcome their anxieties please?

Thank you xxx
Click to expand...
Welcome Nan Ftime. Really good luck. You should be talking to my Mother who in the sixties had me & I was diagnosed when 3. Things are miles better theses days but still a lot of hard work. I spent the day yesterday talking to Nurses in there 3rd year of Uni 😉
 
Wow I’m sorry I missed some of these comments!
I’ve spent some time being trained on how to use the pump effectively and all about carb counting etc. The biggest issue we have atm is hypos. I understand it’s down to finding the right level of basal as it’s still early days.
The last four days have been the best so far with hypos reducing and a more consistent bg which is reassuring.
Thank you all again for your comments
 
There is a lot to take on board initially with the pump, but it is well worth it.

I was surprised that I needed less insulin using my pump than I did before on MDI, but that is because I gradually got the basal insulin matched to my needs on an hour to hour basis. Once that is sorted the rest of the adjustments can be made.

As you sknow rt things out the highs and lows will level and out and the flexibility that the pump brings will come to the fore.
 
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