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RealGoneKid

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Hi

I'm another newbie. My son (aged 5) was diagnosed with T1 on a Good Friday. We've been discharged from hospital today and are seeing the community diabetes nurse on Friday.

It's all been a shock because there's no family history so I feel like I'm on a massive learning curve at the minute.

I'm sure I'll have loads of questions but just wanted to say hi.

RGK
 
Hi RGK, welcome to the forum 🙂 Oh my, it must be so difficult for you at the moment. Things do get easier in time, but there is a lot to take in. Try not to be overwhelmed by everything, and do please ask here if there is anything you are not sure about, or worried about. There are people here with a very broad range of experience who can help you with most things. I would definitely recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas, a superb guide to Type 1 and all the ins and outs. Have a browse of our Useful links thread, and you may find Adrienne's post in the parents section helpful 🙂
 
Hiya!

There is a very good reason you feel like you are on a massive learning curve. Not surprisingly - it's because you are.

However - don't despair because it's not a death sentence by any means these days, though don't let anyone tell you it's easy. If they say that, they either don't know anything about diabetes, or they are liars.

The basics are reasonably simple to get your head round (once you actually grasp that you HAVE to, since you have no option, and come to terms with that part - for which I send you {{{hugs}}} ) but in the wild, it doesn't always follow precisely what it says in the textbook.

This is because (and it's something some of the medical profession still have to get their head round) we are all, simply, different and not one of us ever leads a textbook life! Fortunately, children's services tend to be the most up to date, and also attracts really dedicated and knowledgeable HCPs. Of your team, your son's DSN is about to become your new Best Friend. Treasure her!

But there are ways round every snag you come across, so ask every question you think of - someone on here will know the answer because it's happened to them.

There is no such thing as a silly question ! and I'm still asking them now .....
 
Welcome RealGoneKid.
There's lots of help, advice and wisdom on these boards, from people who have lived with type 1 diabetes since childhood and parents of current children with T1D. So, just ask here, in addition to your diabetes team. When is your son returning to school?
 
Hello RealGoneKid (love the name!)

Sorry to hear of your son's diagnosis. It is a huge shock, was also for us and we do have family history! (my mum is also T1). Your head will be in a whirl at the moment with all the stuff you have to learn, not to mention your son will be upset about what is happening to him. You also have to go through a grieving process (because your life has changed forever, you've lost the happy carefree one and now have one containing a child that has to be medically monitored, injected etc every day for the rest of his life). Again this way everyone is different, it took me 6 months before I could cry at all and then I think we were approaching the 1 year anniversary before I totally broke down and let it out properly (and then the floodgates opened and I was a complete mess for a few weeks!!). But since then I have felt so much better!

But please don't despair, it does get better. Take every day one step at a time. Ask lots of questions, there are all sorts of people on this forum and whatever you might have a problem with there is always someone who can help. Also make good use of your medical team, I don't know what I'd have done without ours in the early days, luckily we have a DSN who doesn't seem to mind if I bombard her with emails containing lots of silly questions and sometimes just ranting!

When you've got your head around things a little, ask about a pump for your son. They are great because they can do much smaller doses than pens can so can offer better stability. Also they have some useful tricks which can help you cope with things like children's parties so that your son can still enjoy himself and doesn't have to miss out on things. Also talk to your son's school, get the DSN involved and a care plan made out so that the school know how to deal with it.

Lots to do... But take baby steps and you will get there because you have to.

I hope this doesn't sound depressing... I was just trying to show that yes it's hard at first but you can get through it! Please ask as many questions here as you need to 🙂
 
Hiya RGK.🙂 Sorry to hear about your little boy's diagnosis. You've come to the right place for advice and support tho.:D
 
Hi there RGK welcome to the forum, you will get loads of help on here, sorry to hear about your son but you will find all your answers here.
 
Thanks everyone. We were away for Easter when he was diagnosed - although thankfully near family and a super Children's Hospital - so we've only got home today.

His DSN is coming to see us tomorrow morning but I don't know when he's going back to school yet. School say that he can't go back until there has been a care planning meeting - the DSN has organised this for Monday morning, so I'll know more then. School didn't seem to think I needed to go to the care planning meeting but I think I do - am I being unreasonable? Unfortunately my husband is back at work on Monday morning so I'll have my son with me - unless they let him back into class. Tbh, he's well in himself and back to his bouncy self (although I know that it can change at any minute) so I think that the sooner he can get back to school the better.... Although the idea of letting him out of my sight is terrifying! Not sure if I'm being over optimistic though....
 
You should definitely be at the care plan meeting. I can't understand why they would say you don't need to attend. If nothing else, it would set your mind at rest that the school will be able to handle any issues that come up.
 
Hi welcome from me too- son Dx over 2 yrs now [15 at dx] Yes DO go to the care plan meeting.Make sure care plan is put up in staff room{ ours was not!] all staff/ supply/dinner staff need to be aware. If they go offsite- hypo supplies need to go too.Discuss PE/ Swimming/playtime/trips etc. But do go-welcome again
 
Hi and welcome 🙂

My daughter is 5 and started school in Sept, we have been fully involved in the care planning for school as well as adding to and tweaking as we go along. You need to make sure there are some staff willing to be trained at school before he returns as due to his age won't necessarily be able to dial up his injections, know when he is hypo, adjust for PE etc and agree with delb t that anyone who will be in contact with your son should have an awareness and access to his careplan. We have a separate box bag for all the kit and paraphernalia involved which we hand over to staff each morning and it goes with her down to assembly, out for PE and any trips - we have a mini hand over of how she has been and what might be needed in the day ahead. Good luck - put your foot down at being involved in the meeting though - it's very important 🙂
 
RealGoneKid said:
Thanks everyone. We were away for Easter when he was diagnosed - although thankfully near family and a super Children's Hospital - so we've only got home today.

His DSN is coming to see us tomorrow morning but I don't know when he's going back to school yet. School say that he can't go back until there has been a care planning meeting - the DSN has organised this for Monday morning, so I'll know more then. School didn't seem to think I needed to go to the care planning meeting but I think I do - am I being unreasonable? Unfortunately my husband is back at work on Monday morning so I'll have my son with me - unless they let him back into class. Tbh, he's well in himself and back to his bouncy self (although I know that it can change at any minute) so I think that the sooner he can get back to school the better.... Although the idea of letting him out of my sight is terrifying! Not sure if I'm being over optimistic though....
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Welcome to the forum RealGoneKid, though sorry to hear about your little boy's diagnosis. My son was diagnosed aged 4, just before starting in Reception.

Do go to the care plan meeting - you need to be central to this process, because it will be you (parents), NOT the DSN, who will be the liaison with the school. Although things are very new to you now, in a few months you will know far more about your son's diabetes than your DSN will, and it is essential that the school come to you and take instructions from you regarding his care. 🙂
 
Thanks everyone.

One of the DSN's came to the house on Friday and she was lovely. She was surprised we've been put on carb counting so early - which shows regional differences I think as we were in hospital in Manchester and now we're back in Herts - but I'm glad we were as I would have hated getting my head around one system and then changing it. The DSN on Friday said that W is well enough to go back to school so I've negotiated with school that he goes back on Monday but I'll go too. The meeting on Monday is apparently more of a training session for staff than care planning meeting and I do understand that there are bits that staff would want to ask his DSN rather than me. It does seem strange though - it's his allocated DSN doing the session on Monday and she hasn't met him yet!
 
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