# Newly diagnosed son 13



## SusieJ (Jan 14, 2012)

Last week my eldest son who is 13 was diagnosed with Type 1.

My husband and I are in shock, trying to be positive and organised ( yeah, right!) and yesterday he went back to school following a lengthy health care plan meeting. I cried as I made my way to the car park as he would be out of my sight _all day_ what if...what if...what if...well of course he was fine and I picked him and his brother up at the end of the day and off we went home for  a friday evening of video games and sibling rivalry. 
Everyone we meet has so much to say,  a well-meaning friend advised the other night that I "make sure he keeps his toe nails trim and clean" er...hello? 13 year old boy? He thinks a bath is a cure and unusual punishment.
Anyway, I havent really got anything to say other than "Hello" I think I may be returning to these pages many times in the coming weeks and months, in the hope that the fog of confusion lifts.


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## Copepod (Jan 14, 2012)

Welcome Susie. 

Lots of parents will reply soon, plus people who developed type 1 diabetes as children or teenagers and grew into healthy adults - I was an adult when diagnosed, but one of the things that really helped me was memory of a 17 year old lad with T1D who'd been in my group on an expedition to South Greenland a few years earlier. 

So, there's lots of practical understanding of the issues of teenagers, including reluctance to wash! Foot care is important, but maintaining decent blood glucose control can mean that he'll never get any circulation nor neurological problems in his feet or anywhere else. Sadly there are no guarantees as doing things right reduces, not eliminates, chances of complications.

You might like to begin with the "sticky" thread in Parents section, written by Adrienne, a parent of a child who needed insulin from very soon after birth. Although it refers to a younger child, some of the content, particularly about insulin regimes & pumps is useful to any age.


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## SusieJ (Jan 14, 2012)

Thanks Copepod, I didnt mean to sound like I thought my friend was being daft with the toe nail stuff, I understand the need for good foot care, its just that less than a week after diagnosis my heads so full of insulin, carbs and the like, trying to get the poor lad to think about his feet was way down on the agenda (although he has seen a podiatrist!) 
Ive read the 'sticky' very useful; thanks!


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## Northerner (Jan 14, 2012)

Hi SusieJ, welcome to the forum  Very sorry to hear about your son's diagnosis. Thinks will seem very difficult at first, but you, and he, will learn to adapt. Have a read ( if you haven't already!) of Adrienne's post at the top of this section:

http://www.diabetessupport.co.uk/boards/showthread.php?t=23853

This will give you some idea of what to expect. There are links to a lot of good information in our Useful links thread - I would particluarly draw your attention to the book Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas - an absolute 'must-have' for all Type 1s (not just the youngsters - I'm 53!). Also, the website Children with Diabetes has a mailing list with hundreds of very supportive parents, many of whom are also members here. You won;t be lacking in support! 

What insulin regime is he on and how is he coping? Please let us know if there are any concerns or questions you may have - nothing is considered 'silly', so please ask away!


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## Copepod (Jan 14, 2012)

SusieJ said:


> Thanks Copepod, I didnt mean to sound like I thought my friend was being daft with the toe nail stuff, I understand the need for good foot care, its just that less than a week after diagnosis my heads so full of insulin, carbs and the like, trying to get the poor lad to think about his feet was way down on the agenda (although he has seen a podiatrist!)
> Ive read the 'sticky' very useful; thanks!



Sounds like you already have a very good handle on balancing priorities, which is one of the things that some parents find among the most difficult aspects of a child developing diabetes. 
You're completely right that insulin and carbs are more important than toenails at present  
He's still a teenage son, just now with diabetes!


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## Robster65 (Jan 14, 2012)

Hi Susie. Welcome 

Sounds like you're going to get on fine. How is he taking to the whole routine ?

I was diagnosed at 13, a long time ago, but things have improved so much over the years, although of course, it's still a huge life change at that age.

As long as he does mostly what he should, he'll be the healthiest lad around. Do stick around and tell us how you're getting on day to day.

Rob


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## trophywench (Jan 14, 2012)

Hi from me too Susie.

Are there other T1's at school too? - just thinking that makes it easier all round cos school are used to it etc.

I'll say nothing about 13yo boys except a) they have hollow legs and b) they all go through a great unwashed won't change underpants/socks phase.  However they do start washing again but it usually means they fancy someone ...... and that's a whole new ballgame!


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## Tina63 (Jan 14, 2012)

trophywench said:


> I'll say nothing about 13yo boys except a) they have hollow legs and b) they all go through a great unwashed won't change underpants/socks phase.  However they do start washing again but it usually means they fancy someone ...... and that's a whole new ballgame!



Still waiting for this moment to happen!!!


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## Tina63 (Jan 14, 2012)

Oh and Hi Susie, Welcome to the forum.


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## Steff (Jan 14, 2012)

Susie hi and a warm welcome to the forum from me


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## MeanMom (Jan 14, 2012)

Hi Susie - welcome

My daughter is coming up to 13, would suggest them getting in touch but not sure they would appreciate it

Keep coming on here if you have any queries and let us know how you are getting on - the 'support ' part of the forum is very important - many (myself included) often use it to offload/rant. 

If you are carb counting or thinking about it would really recommend 'carbs and cals' especially the app. if your son has a compatable phone etc. K has it on her iPod and it let's her carb count when she is out with her friends or rare occasions she has school dinner. 

Hope to 'see' you soon


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## SusieJ (Jan 14, 2012)

Thanks all, what a nice welcome! 
There are 4 other T1's in school, 3 of them pump, so I guess he will see the other (a girl in the year above him ) at lunch when they go to the nurses room (unless she has made other arrangements) Im not sure how or whether to make contact-I think I'll leave it up to him; all the kids in school seem to know each other inspite of it being quite big-he may know her already and not know she is diabetic. Two of the others are boys in the sixth form who may be able to chat to him-I'll give him a couple of weeks and see how things go.
We haven't started carb counting yet; they said they would give us a couple of weeks to establish a basal level then start on the counting-will definitely get the app, thanks for that (he already recording his bloods on an app-ahead of me of course!) 
One question for people; has anyone had any experience- good or bad- of counselling for youngsters newly (or struggling) diagnosed? There is a counsellor in school who he is entitled to see and I was wondering what people thought (of course it will be his decision) ?? thanks again

Susie


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## Tina63 (Jan 14, 2012)

Our team at the hospital have a psychologist/counsellor - I would have thought all hospitals have access to one.  My son saw her early on as he went through an anxiety phase of not wanting to leave the house a few weeks after diagnosis (be prepared for something like that).  You could ask your DSN.  You will probably find your school counsellor has so little knowledge of T1 diabetes, but then I could be wrong.

My son got on really well with his school nurse in the early months.  He spent quite a bit of time in her room when the hypos started, but at least it was someone he could talk to outside of home or the hospital.  She was instrumental in getting the hospital psychologist to see him, she in fact visited him at school, so you could also seek some support from your school nurse.  Give her a ring for a chat.  Ours was really good.

Our nurse also offered to set up a meeting with him and some of the other T1 children, but my son did the typical teenage thing and said "Err, no thanks!"  Your son will find his own way.  How are his closest friends behaving around him?  Is he able to be open with them about it all?  Have they ever seen him test or inject, or seen any of his kit?  I think that helps break down barriers if they can at least get some idea of what is going on.  Our area don't seem to offer pumps, they have never mentioned it to us even in passing, and my friend's son who was diagnosed as a 3 year old is still injecting 13 years later.


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## SusieJ (Jan 14, 2012)

Tina, his friends have been fantastic, he has shown them all his kit, shown them how he does his bloods and injects, he has a really lovely little gang of (mostly girl) friends one of whose mums is T1 and when he was in hospital last weekend he spent the whole weekend texting her back and forth. One day last week before he had started back at school, at around 3.45 there was a knock on the door and there was a gang of 5 of them all come to see how he is!

He also has an 11 year old brother who is being a star, today we talked to him about what to do if M has a hypo, where the stuff is etc. He's the one who spends the most time with M so it makes sense although I dont want him to feel responsible! So much to think about isnt there?


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## Tina63 (Jan 14, 2012)

SusieJ said:


> He also has an 11 year old brother who is being a star, today we talked to him about what to do if M has a hypo, where the stuff is etc. He's the one who spends the most time with M so it makes sense although I dont want him to feel responsible! So much to think about isnt there?



That's lovely to hear he has been so open with his friends and they have been so supportive.  That's a really positive thing.  My son was almost 16 when diagnosed a year ago and I think had reached that really awkward stage, so wanted/needed to be much more private.  He took days to tell even his closest friend.  You have at least broken down some barriers there, and knowing someone with T1 is a definite advantage.

So glad his brother is being so supportive too.  I have a daughter almost 5 years older than my son (non-D) and she was instrumental in getting my son to the doctors in the first place and was a 100% star in the hospital helping him through his needle phobia etc, and is a real star to this day.  All I would say is do remember from time to time to make some 'special time' for your other son too.  And remember it will be worrying him/making him sad too.  Give him opportunities to talk/share his worries etc with you.  My daughter still feels a year on that she hasn't totally 'let go' of her emotions concerning her brothers diagnosis.  She says she felt she had to hold it together when we were falling apart, and still hasn't fully grieved herself.

Family are great though.  All stick together, and you get there.  Every day brings something new, but with each other, you get through it, honest.

Good luck.
Tina


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## MeanMom (Jan 14, 2012)

Susie -just to say my daughter has counselling at her clinic and it is very good.  Unfortunately it is only for around 20 mins each clinic, which are generally once every three months, although we could go more if necessary.

Unfortunately, due to her quite complicated experiences before during and after Dx this councelling has not been enough, and we are trying to get more regular counselling, but apparently this cannot be with the councellor at clinic despite her knowing K well now and K really likes and trusts her. 

So if you are offered counselling take it even if you think he doesn't need it - you never know what is going on in their heads - don't want to be alarmist but K was fine for about 5 months after Dx then got very down and has ups and mostly downs since  Her circumstances are exceptional but I wouldn't want any child (or family) to go through half of what we have these last 2 years. 

Hope things carry on going well - your son sounds like he has good friends, which helps

Xx


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## Hanmillmum (Jan 16, 2012)

Hi, bit of a late welcome from me 

Nice to hear your son has a good support network, hope he's ok x


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## mum2westiesGill (Jan 16, 2012)

Hi SusieJ,

Welcome to the forum  

The response & help you'll get here is fantastic, you've joined the best place!

Good luck for your son 

_Gill  _


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## Adrienne (Jan 16, 2012)

Hiya and welcome

Sorry you have to be here but its a great place to be for the reason you are here.

Just one thing to note re counsellor at school.    I haven't yet heard of a school counsellor who is trained or has knowledge of type 1 diabetes !    I obviously can't say if this counsellor will be good or not but try the medical team first and see if they have one.   It is always good for the child to see a psychologist but very good if they have an understanding of type 1, it makes all the difference.


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## MeanMom (Jan 17, 2012)

Adrienne said:


> Hiya and welcome
> 
> Sorry you have to be here but its a great place to be for the reason you are here.
> 
> Just one thing to note re counsellor at school.    I haven't yet heard of a school counsellor who is trained or has knowledge of type 1 diabetes !    I obviously can't say if this counsellor will be good or not but try the medical team first and see if they have one.   It is always good for the child to see a psychologist but very good if they have an understanding of type 1, it makes all the difference.



Agree with Adrienne that councellor with experience of D much better, but any counselling better than none (as long as child finds it useful course) 

K currently see school councellor _and_ the one at clinic. We are trying for a third as she finally has referral to CAHMS - hoping she will get a CAHMS councellor with D experience.


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## Ruth Goode (Jan 17, 2012)

Im sorry you had to be here but it is a lovely forum.  Since my daughter was diagnosed I have been been since and I'm really grateful for others' supports and advices. Im sure we will all be happy to answer all your questions, no matter how stupid they are! Stay strong


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## fencesitter (Jan 18, 2012)

Hello! Another teenage T1's mum here. My son is 14 and diagnosed in March last year. He doesn't like talking about his health much, but he does seem to manage OK emotionally unless I am missing a trick. He has very nice friends at school who take a bit of an interest in his diabetes which helps. Your son has made a great start by being so open about it all. Hope you are OK too! It's hard when your kids are faced with something like this at an age when they're keen to assert their independence. I can be very overprotective according to William but I do try not to be!  It's been taken out of my hands to some extent as he started weekly boarding in September. But you should see me pounce on his meter when he gets in on Friday nights, ha ha! I have a nice bit of software to go with his meter that downloads all the last week's readings and makes a chart out of them. Helps a lot as we've spotted a pattern of post-lunchtime lows.
I'm rambling now so will sign off, but hope to hear how you're all getting on soon.


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## SusieJ (Jan 19, 2012)

Well we've ahd an up and down week (to be expected of course) with first thing in the morning the most difficult (" I dont want to test! I dont want diabetes") I just wait for him to come round and we get on with itl Whats a few mornings late for school, right? 
M saw the consultant and Diabetes nurse again on tuesday and this mildly freaked him out, all the talk of hypos and the like, somehow when the doc told him that he woulddefo haev a hypo one day (hasnt so far) that was a real shock to him as he hadnt picked up on that so far (he had been told several times but just shows the value of repitition!) 
Anyway, Im waffling and Im in work so better get off! thanks again all


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## delb t (Jan 19, 2012)

SusieJ said:


> Well we've ahd an up and down week (to be expected of course) with first thing in the morning the most difficult (" I dont want to test! I dont want diabetes") I just wait for him to come round and we get on with itl Whats a few mornings late for school, right?
> M saw the consultant and Diabetes nurse again on tuesday and this mildly freaked him out, all the talk of hypos and the like, somehow when the doc told him that he woulddefo haev a hypo one day (hasnt so far) that was a real shock to him as he hadnt picked up on that so far (he had been told several times but just shows the value of repitition!)
> Anyway, Im waffling and Im in work so better get off! thanks again all



 our son was diagnosed 8 th dec and to be honest I was totally freaked out by the hypo thing as I cant remember them using the term I think they said lows to break us in gently- I think they all are effected differently - he at the moment just sort of feels faint and so whips out the monitor- tests and pops the dextrose- at the moment they are reducing the night lantus we started at 20 now on 14-I felt totally thick at the start of all this but I ring and ask the nurses about pe /games lessons etc because sport has a big effect on him- keep strong


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## Tina63 (Jan 19, 2012)

Hi Susie

Obviously I don't know how things went for other T1s after diagnosis, but my teenage son who was diagnosed just over a year ago had his first hypo 5 weeks in.  His first one wasn't a true hypo figures wise - it was 4.1 - but he went deathly white, got the shakes, felt faint and nauseous, but the coke worked like magic.  Trust you have some, or lucozade, or dextrose tablets etc in.  

I would suggest you try and gently explain to him that they will happen from time to time (each time it was a signal to my son's team to lower his Lantus) and that is all the more reason to test regularly.  Tell him not to ignore things if he feels a bit 'odd', don't be afraid to either test in the classroom or ask to leave (with a friend) but don't ignore the signs.  Also reassure him he will be fine once he treats it.  I had visions of my son dropping to the floor at the first sign - no-one explained really what was likely to happen, so I think we all lived in fear.  I never asked my son what he expected either, but I think he was scared witless by the thought of it.  It's not nice, but usually things perk up pretty quickly.  Once you have all been through the first one or two you will relax a little about it.  It will unnerve him (and you) to begin with, but you soon all become expert at noticing the signs.  My son's colour is usually the first sign of trouble.

My son had hypos 3 or 4 days in a row, so the Lantus was lowered, he stabilized for a week or two, then they started regularly again, so it was lowered again, and that's how it goes.  Others will tell you on here thought that there is no rhyme nor reason to it, and just when you think things are ticking along nicely, a hypo can strike.  So just make sure he carries coke/lucozade/dextrose etc around with him AT ALL TIMES.

Hope that takes some of the mystery away for you, and also I haven't scared you witless!

Tina


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## Gillsb (Jan 21, 2012)

A rather belated welcome from me.  Haven't been on for a while, just normal busy life stuff going on.  I along with many others on her have or are going through the "life with a teenage type 1" stage.  You sound much calmer than I was when my daughter was diagnosed at age 12 and your son obviously picks up on this and is doing really well.  Hearing you talk about the first potential hypo takes me back - I remember expecting quite a major event with lots of drama but how wrong could we be, it turned out to be quite a non event.   A simple "I feel different", followed by a blood glucose test (3.8), carton of juice and life carried on as normal and has since then.  They soon recognise their own symptoms (and although not to be ignored) will in time be a help in getting his insulin right.  

Give yourselves a pat on the back so far and remember there are loads of people hear to help you with any questions or just to chat if you need to let of steam.  Take care.


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## justlikethehotels (Jan 21, 2012)

Hi Susie

I can say, with absolute certainty, that in a months' time you'll be amazed at how much you already know... my 13 year old daughter was diagnosed on 12th December ...

I won't pretend it's easy ...

Hypos will happen (that was the killer for me - up until that conversation I'd been thinking "it's OK, we can do this" and then I realised that no matter how well we manage her carbs, at some point she was going to have a hypo), but he'll manage them with your help. 

One day he'll say "why me" and "it isn't fair" you'll cry and say "I don't know and no, it's not fair", but you'll get on with it and it'll be OK again for a while...

One day you'll get a call from the school and it'll be like he's a baby again and you'll rush to get him and he'll shake you off and tell you to stop being so embarrasing ...

One day you'll ask yourself what you did wrong ... and hopefully answer yourself virtually instantly with "Nothing, this wasn't my/our/his fault".

One day he'll go off to town on the bus with his mates - he'll have lunch while he's out and go bowling. You'll panic all the time he's out and he'll swan back in as if nothing's happened  ... just like my daughter is today.

I guess what I'm saying is, today it's really hard for both him and you, your husband and his sibling, but you WILL get there, even if it's up and down and haphazardly and in a months' time you'll be an entirely different family to the one you are now, but still completely the same 

And I'm hoping that what everyone says is true, and in a years' time it will all be second nature to us!

Best of luck x


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