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Hi everyone :)

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EveryRose

New Member
Relationship to Diabetes
Parent of person with diabetes
My son Robbie, who turned 11yrs on the 16th August was diagnosed with T1D on the 25th August this year. Just a week after his birthday and the day we get back from holiday. He was weeing and drinking tonns in the holiday, wetting the bed and exhausted all the time.
He was in the early stages of DKA...NHS direct were c**p and told me over the phone that his symptoms were "probably a urine infection" so they didn't say bring him in to hospital. Instead told me to wait until Tuesday and go to my GP. It was Saturday morning when I called...the Monday was a Bank Holiday. I wasn't prepared to wait.
I got hold of my stepdaughters moms blood glucose machine and used it on him and his reading came back as 27mmols. I panicked and hubby was calm and said it didn't mean anything but I knew it was T1D (I have T2D in my family and know what high bloods are). Rushed him straight to A&E by then his bloods were HI and 32mmols and he was admitted straight away, apart from his symptoms he wasn't showing classic DKA signs but if I had left him until Tuesday then I would dread to think what could have been.

He just started to carb count last week, but already by the 4th day I wasn't happy so I wrote an email to his dietician and she upped his ratio for lunch.
There's so much tweaking to still do.

He is doing so well with it, started injections the 2nd day by himself and doesn't bat an eye lid.

So proud of him.

I also have 3 other children, who I watch like hawks now and pray to god they don't develop T1D.
 
Hi EveryRose and welcome to the forum.
Sorry to hear your son has been diagnosed with diabetes :(
It sounds as if you are both proactive which is more than half the battle so well done the both of you and a big round of applause for your son for doing his injections on day 2 what a star.
Carb counting is def the way to go as well.
 
Hi EveryRose, welcome to the forum 🙂 Well done for picking up on what NHS Direct didn't and getting him the help he needed. I also fell ill over a BH weekend and waited - by which time I was very seriously ill, so it is good that you were on the ball! Also good that he has taken to things well. As no doubt you are already aware, there is a great deal to learn, but you have made a great start. Don't get overwhelmed by it all, and try to deal with things one day at a time for now. He'll have ups and downs, so try not to read too much into any highs or lows, just try and think what the cause may have been.

I would recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas. This will give you a very good grounding in what it all entails and is an excellent reference guide.

We've got lots of lovely parents here who understand what you are going through, so don't be afraid to ask as many questions as you need to - nothing is considered silly, and our members will try their best to help.

Have a look at our Useful links thread for access to more good information.
 
Hi EveryRose,

Well done for pursuing it the way you did! Useless NHS Direct - the symptoms you describe are text-book and should have been acted on. It sounds like you and your son are doing really well.🙂My son (now 14) was diagnosed at 10 so I know how shocking it is watching your child go through it all. I am a member of CWD (childrenwithdiabetes) with around 500 parents of a child with Type 1. It is an emailing list with so much expertise and support that I dont know what I would do without it. And of course this forum is great too - just see it from different angles. My son now uses a pump which allows for more freedom and better control - but dont worry about that for now - your doing great and being really pro-active learning all you can - well done.🙂Bev
 
Hiya, sorry your son and you have joined our Club - we are a merry band generally but funnily enough, not one of us joined willingly and wouldn't have even if they'd paid us! What kind of advert is that for a Club? LOL

I'd just like to say, sorry about this, but tweaking is just one loveable quirk of the treatment. It doesn't often stay still for very long and at times can be hyperactive even thought we never feed it E numbers. You and he WILL get used to it's little foibles but sometimes - either or both of you will need to have a rant and slam some doors etc.

You can use the forum for that purpose as well as good sensible Q and A.

That's exactly what friends are for, isn't it!
 
Hi EveryRose - sorry to hear of Robbies diagnosis. My daughter was diagnosed at age 10 and as no age is a good time to be diagnosed this is a tough age just as they are starting to want more freedom from their parents you have to be so involved with everything they do- a tricky time. There is so much to take in at the start too. The best two things I did for my daughter and myself was getting her using an insulin pump and joining the children with diabetes uk mailing list which has a wealth of expertise of parents and carers of children with diabetes. We meet up sometimes and it's great for the kids to feel normal testing, injecting/pumping and if hypo no explanation needed.
 
Hello from me too. What a good job you knew what the symptoms of T1 are. Diabetes UK's recent campaign about the signs of T1 is obviously much needed, even among so called health care professionals!!! 😡 Yr son is very fortunate to have you there fighting his corner, and he's doing a great job too. Mine is aged 15, diagnosed at 13 and doing OK on the whole. It is a bit of a roller coaster, especially at first! Looking forward to getting to know you on the forum.
Catherine
 
Hi Every Rose, my daughter was also 11 when she was diagnosed on Halloween last year. A year onto it and we are still learning and still facing some challenges, but it has certainly got easier for us both. Welcome to the forum. It has been a source of strength and comfort to me many times over the last 12 months and I am sure it will be to you too.🙂
 
Hi there, I'm really new to all this but just wanted to say hi and welcome! You sound like you're doing a great job and good
 
...sorry, son jogged my arm! You're son has done awesome to get to grips with injecting. My son is keen to try but he's a bit young still. I look downward to chatting in the future!
 
Hi Rose

Sorry you had to join our club, but hope to see you more on here, now you have.

NHS Direct are useless. We were almost in the same situation as you. We also phoned them on a Saturday (2pm), asking if it could be Diabetes. They said they'd phone back. Well they did at 12.30am. Asked again and went through the sypmptoms. She said yes it could be, just give her as much to drink as she wants tomorrow and take her to GP on Monday. So we did 😱
Luckily we caught it early and Carol wasn't very poorly. We even sent her to school on Monday as her appointment wasn't till 5pm 😱 I had the same thoughts as you, dreaded to think what could have happened had she been in DKA. But I like to think if she'd deteriorated badly, we'd have taken her to A&E straight away
 
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