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Newly diagnosed son 13

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SusieJ

New Member
Relationship to Diabetes
Parent of person with diabetes
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. :confused:
 
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.
 
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! 🙂
 
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! 🙂
 
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! 🙂
Click to expand...

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! 🙂
 
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
 
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! :D
 
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! :D
Click to expand...

Still waiting for this moment to happen!!!
 
Susie hi and a warm welcome to the forum from me
 
Hi Susie - welcome

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

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 🙂
 
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
 
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.
 
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? :(
 
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? :(
Click to expand...

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
 
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
 
Hi, bit of a late welcome from me 🙂

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

🙂
 
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.

🙂
Click to expand...

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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