# DS 7 newly diagnosed with T1



## Shani (Oct 17, 2013)

Hi  

DS 7 was diagnosed with T1 diabetes last Friday. 

He'd not been himself for a while, and hindsight is an awfully wonderful thing. He literally had every single symptom. I knew nothing about diabetes, and it was only after Dr Google flagged up diabetes and DH took DS to my in-laws house, and used DFIL's BG testing kit (DFIL has type 2), and it read 24 - and then 26 (because a reading of 24 HAD to be a mistake by not washing hands properly...) - we took DS to see the GP on an emergency appointment. 90 minutes later, we were being told by the GP that DS had T1 and we were to take him immediately to the children's ward. 

Friday night is a bit of a blur. DS was ok in himself, just tired, and not as chatty as he had been for a couple of weeks. 

I think his BG was 28+ when he was admitted and his ketones 6.8. He was in DKA. 

Luckily, at the time, I didn't have a clue what that meant. 

He was on IV insulin and saline/glucose through the night. At one point early morning his BG dropped to 2.8 (which is when the IV glucose came out). Again, at the time I didn't have a clue what 2.8 meant. 

So, slowly, since then, we've all had to start getting our heads round what this all meant. 

His DSN wasn't working until Monday, so it was the staff nurses on the children's ward teaching us. They were really lovely. 

We met with DS's DSN on Monday, and she's lovely too, and at 7.00pm on Monday he was discharged. 

Up until today I've been calling DS's DSN before every dose of insulin. Today, she's left the ball in my court and given me rough guidelines. 

To be honest though, it's because of books, leaflets, and forums like these that I am now perhaps resembling something close to human. I'm trying to take in as much information as possible. We haven't specifically been told anything about carb counting, carb to insulin ratios or anything like that - but are slowly figuring it out. 

DS, through all of this, has been amazing. He hasn't complained nor moaned or cried once. He's taking it all in his stride. It's his strength that's keeping us all, including his brother (12) and sister (9) sane. 

We've been fighting high levels since Friday (16-28) but yesterday was mostly 8-14, and today we experienced his first hypo. He went out to get some milk with DH and his BG was 11. He came home an hour later just in time for lunch and he told us his legs felt shaky. He was 3.7. Of course, it was really scary seeing the numbers that low after them being so high up until now, but out came the lucozade, and he was fine an hour later after having his lunch and novorapid to go with it. 

He's currently on 3/3/3 and 6 of lantus at night. His DSN has mentioned 1 unit to every 10g of carbs, but I'm already seeing a pattern that he needs more earlier in the day. 

I think I'm probably still running on adrenaline at the moment. It's all so much to take in - but DS's strength through it all is really, really helping. I'll take off as much time as is needed to be with him (his school are dragging their heels as to what route they want to take to get him back). Time off isn't a problem, but it being unpaid might be - but never mind, we'll deal with it. 

I've written a huge post here, so sorry for rambling. 

I've enjoyed using forums for many years and find them a really useful source of support, so hopefully you'll welcome a new face, who's terribly nervous about this new chapter in our life.


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## Northerner (Oct 17, 2013)

Hi Shani, welcome to the forum  So sorry to hear about your son's diagnosis, your story sounds very familiar and symptoms are often overlooked, even if quite pronounced. It sounds like you have been started on a good regime with the novorapid and lantus rather than a mixed insulin which can be a little inflexible, and it sounds like you are all doing well getting to grips with things. I would recommend having a look at Adrienne's guide for parents of newly diagnosed children, and if you haven't already got a copy, the excellent Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas, also known as the Type 1 bible 

Things will be a little up and down, but I can see that you are already starting to spot patterns and it sounds like you are getting excellent support from the DSNs. There are lots of lovely parents here who can help with any questions you may have, and it might be encouraging for you to read about the experiences of some of our other Type 1 members who may have grown up with it and are now living proof that it doesn't have to stop you from doing anything. I just read a story today about a lady who was diagnosed in 1943 and is still full of beans and going strong! 

Another good source of information is Children with Diabetes, so worth checking out their website, and also our Useful links thread.

Please let us know if we can help in any way, even if it's just for a rant or a moan!


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## HOBIE (Oct 17, 2013)

Ramble as much as you want !   Sorry to hear about Ds, but i can tell off what you have already said you are on the right track. Rome wasnt built in a day & you have alot to take in. 99% of Nhs staff are very good ! Good Luck


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## Shani (Oct 17, 2013)

Thanks for the welcome! 

I'm working my way through those threads (and many more!) I think all I'm doing is reading at the moment, but it's really helping me start to understand it all. 

I've seen that book mentioned a few times now, so will have to look into getting it. 

Again, thank you both for the welcome


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## Northerner (Oct 17, 2013)

Try not to become overwhelmed by information, it will start to make more sense as time goes by


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## bev (Oct 17, 2013)

Hi Shani,


Welcome to the forum.My son (now 15) was diagnosed at 10. I completely understand all the feelings you have described - and I felt guilty too as Alex had been ill for 13 days and showed all the symptoms - but the GP didnt pick up on any of it. I took him to a walk-in-centre where they checked his blood and it was 38 with +++ ketones! If you have any questions or just want to chat this is a great place as is the CWD site - you will learn a lot from both. It sounds as if your son is doing really well coping with it all. My son now uses a pump which gives him better control than injections - but thats a way off for you to be thinking about just now - one step at a time.Bev


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## Hanmillmum (Oct 17, 2013)

Hi and welcome from me too! 

Gosh what a rough old time you all have been having and so sorry you have to be here  I recognise it well and it brings it all back. 

It sounds like your well on the way to getting sorted and collecting all the info you can, good on you! There's a lot to take in so be easy on yourself, it's not a thing that you always can get right despite the effort and you will be met with frustration and perhaps guilt too, as your sons "carer". 

It took a couple of weeks for my daughters levels to settle into any sort of norm (whatever that is) after her diagnosis and it didn't help that she wanted to eat for England 

 It can be tough at times but you are not alone and we are here if you need any support  best wishes


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## PhoebeC (Oct 17, 2013)

Wow. What a time you have had. 

Sounds like your all doing well with it, it's a quick way to learn something.

He will be fine and hopefully he will grow up thinking it's all the norm to him and he won't think of it as a horrible thing, just part of him.

Personally I was a well behaved teenager and young adult because if it. I don't drink to much and have always eaten well and exercised. Most diabetics I know make it work into there lives.

We have long busy life's. He will be fine and with your support. Sounds like your doing a great job. 

Take care and keep your chin up x


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## Shani (Oct 17, 2013)

Thanks for taking the time to reply  

I just can't believe I didn't get him seen sooner to be honest. Diabetes never even entered my mind. I didn't have a clue what the symptoms were. A whole week had passed since I'd text my husband at work to say something was up with him, as he'd come home from school tired and saying he wanted a nap (which he hasn't done for years), but constantly eating and saying he was hungry and drinking milk like he couldn't get enough. 

I could also smell the ketones on him, but no one else could. (I recognise the smell of ketones since my eldest DS had a transient form of MMA [metabolic condition] when he was 2, so as I was taught then - ketones = give more calories as the body is burning fat stored). We all got a stomach bug back in June/July, and I could smell ketones on him then, so has it been going on that long?!  The weight loss was really rapid - about 10 days - and very, very noticeable by last Friday. 

Bless him though, he really is being so, so brave. I'm glad he's really mature for a 7 year old, and very very bright with a reading age of 11. We make sure when discussing it all that we're talking to him, not about him. He asks lots of questions and seems to be very accepting of it. I guess that's one positive point - he realises that he's been feeling unwell for quite some time, and his insulin (got to laugh, he calls his Lantus "atlantis") makes him feel better. He's also done quite a few BG checks himself, and being honest, he does a better job at getting it right than I do! 

Oh, I'm waffling again...


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## Northerner (Oct 18, 2013)

Before I was diagnosed I was drinking 20-40 pints of milk a week and it didn't click!  Diabetes UK and JDRF have been running campaigns to help people recognise the symptoms of Type 1, because such a large proportion of the population doesn't have a clue (including a worrying number of healthcare professionals ), so you are far from being alone!


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## PhoebeC (Oct 18, 2013)

I was diagnosed 8 years ago at 16, I was the same I lost a stone in 10 days but none stop eating, and cold symptoms. Drinking gallons and seeing lots. We had no idea. Do not for a second beat yourself up about it.

Thats one thing you and he will have to put up with.Others uneducation, like you can't get diabetes if your young/thin/heathly and that it's self caused(that one hurts sometimes, or my favourite 'I couldn't be a diabetic I hate needles' Like we enjoy it?

I very rudely said to my brother the other day 'How did mum not know?' Thts so wrong of me.

It is rare anyone knows the signs of it. How could I even think my mum would know, when she didn't even know anyone with it. I cannot imagine ow it was for her, it was so hard for me. I know I'd do anything for my child and how it would affect me if she had something like this. As northerner said both DUK and JDRF are really pushing this at the moment so people are aware, I think because all the media talks about is T2 parents and young adults never think of it. I didn't know what it was till I got it.

My hat goes off to you. You really are doing him proud.

It's great he knows what's going on. He will need your support, but he knows his own body best. You said he spotted a hypo the ither day? well you can't really do that for him, or even high sugars. You just feel rotten, yes there are warnings but being self aware is key. So he is doing great. And he will be better at testing, other people are rubbish at it  

This forum has been a godsend to me, your lucky to have found it so quickly.

All I can say is forget what happened, can't change it now. No point in worrying about that, it's all about from this day onwards. He is well now and you know the score, just help him learn with you how to handle it and in 10 years time he will be on here intdroducing himself with no complications asking about what's best to eat if your drinking beer ha! 

All I can say is make sure he knows there's nothing he can't do. He can still have the same life and dreams.
I was told I wouldn't be able to have a baby, if I got pregnant I'd need to plan it or years and they would get it. That's all nonsense, my daughter is 3, and no diabetes. Don't get me wrong, it was no walk in the park. I also have a good job and get married, it's not a noble peace prize but when thu told me those things it was like I'd have nothing ever.


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## PhoebeC (Oct 18, 2013)

And we love a good waffle on here


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## Redkite (Oct 18, 2013)

Hi Shani, welcome to the forum . Sorry to hear about your son's diagnosis, and I completely understand what you're feeling.  My son was diagnosed aged 4 and it turned our lives upside down . In his case, symptoms started becoming noticeable on holiday to France - we were driving long distances and stopping frequently for toilet and drinks, and he was drinking gallons (what's more I was giving him cartons of orange juice, so inadvertently adding to the problem with loads of sugar - I was one of those people who thought fruit juice was "healthy" not sugary!).  He got increasingly tired, but I thought he was just playing up because he didn't want to go for a walk etc.  I still feel guilty about that!

Anyway, it sounds like you are doing brilliantly, it's really early days - do get yourself the Ragnar Hanas book, which is practically a bible for type 1, and please ask any questions you want! 

On the school front, I'd advise getting your DSN to help you draw up a school healthcare plan, and go into the school with her to train staff about hypos etc.  There is lots of help and info on the Children with Diabetes website and email list too.


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## delb t (Oct 18, 2013)

Hi Shani -welcome from me- sorry you have to be here....but glad you found us so soon.My son is older 17 and dx at 15.I knew nothing about diabetes either  he had been drinking alot say a week before.. then went on a school trip{ up some mountain]was actually eating the snow at the top because of the thirst!.Anyway theres alot to take in. as time goes on it does get easier  honest-just abit more planning involved,What a brave little boy you have -you should  be so proud- welcome again

Phoebe....lovely post


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## Shani (Oct 18, 2013)

Thanks everyone, I really appreciate all your replies  

It is getting easier, day by day, and I feel his DSN is very supportive. She called me earlier to make sure I had all the supplies I needed for the weekend and that I had all the contact numbers if I needed to speak to someone over the weekend if I need to. She's going to call me again on Monday, and we have an apt with her and the dietician on Tuesday in a local clinic. 

We're sticking with 3/3/3 novorapid and 6 of lantus, and to give an extra unit of novorapid if his bloods are near the 20 mark. 

They're having pasta for dinner tonight, which will be the first time I get to see how his bloods react to that. From what I've read, his levels could rise more than usual? We will see...

The DSN had called the school and visited to speak with the headmaster, and, on Wednesday, it was left at "I'll have to call a meeting with all the teachers". The school secretary called me earlier and asked to meet with us, so we're going in at 9am on Tuesday (DH has a day off Tuesday). The thing is, Wed/Thurs/Fri are then inset days, and then it's October half term, so he won't be going back until the start of November at the very least - but, the DSN is off herself that week (there's only one paediatric DSN here), so it's all up in the air a little now. I have said that, at least to begin with, it won't be a problem for me to go to school to test his blood and give him his insulin. I just hope we can work out a better long term plan than that, as I really don't want to (or can't afford to) not work at all for the next few years until he can inject himself.  

He's is absolutely bored stiff at home. He even sat on the bottom step of the stairs earlier waiting for his sister to get home from school so she could do his new jigsaw with him (mummy wasn't good enough!) I am definitely running out of ideas of how to keep him occupied. 

Really trying not to beat myself up over the run up to his diagnosis, but it's hard not to. I'm his mum and I should have spotted it, but like it's been said - I can't do anything about that now, but I can make sure that from now on, we tackle this head on and make sure he's safe and cared for.


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## Northerner (Oct 18, 2013)

Just a quick note about pasta - many people fnd that it can give a late spike in levels, as it can take longer to digest than the insulin activity time i.e. the insulin may last 4-5 hours in his system, but the pasta might last 8. Doesn't happen to everyone though


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## Cleo (Oct 18, 2013)

hi shani
please don't beat yourself up about it - as you said, hindsight is a great thing.  We all have moments when we say 'if only I had realised XYZ...' and the truth is that we dont know and blaming ourselves isnt going to make anything better .  The important thing is that it has been spotted and he has his insulin etc which will help to manage the condition.

he sounds like a very adorable little boy who is coping remarkably well given his age and circumstances ! - "Atlantis" - love it !.  

Try to take one day at a time, otherwise it will all be too overwhelming.  Things will settle down with time and always remember that there is no reason that your boy cant achieve anything he wants to achieve in life and that he is no "different" from anyone else....all we type 1's need is a bit of extra planning 
cleo x


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