18 year old son diagnosed 3 1/2 years ago

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maria0268

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Hi,

I decided to join this forum after reading a blog by Patricia, which really moved me. My 18 year old son was diagnosed with type 1 when he was 14. Luckily we caught it before he got ill, but what a shock! My son has never wanted to go to any of the events organised by local support groups, preferring to keep his diabetes to himself. I couldnt handle talking to anyone else about it for a long time after diagnosis, not without crying anyway!

Its hard going trying to get my sons HbA1C down when he wants to have as little as possible to do with it. Hopefully I may get some ideas on teenagers with diabetes here.

Maria
 
hi maria

welcome to the forum! there are a fair few of us who have been through the teens with type one. would your son be interested to come on here? if you check out the 'off the subject' forum, you'll see we talk about a lot more than just diabetes!

please feel free to ask as many questions as you like!

shiv x
 
Hi Maria,

I'm nineteen and know just what your son is going through. If he wants to chat to someone like me I'm available through Facebook or MSN. Just send me a private message and I will give you the details. There's nothing that's too daft to ask here, it's all just one extended family, all the rooms have padded walls!

Tom
 
Hi Maria, welcome to the forum 🙂 You've already 'met' a couple of the people far more qualified than me to offer advice to your son, but you'll also gets lots of support from the older contingent whenever you want it 🙂

Can I recommend a great book for Type 1s, young and old, by Ragnar Hanas Type 1 Diabetes in Children, Adolescents and Young Adults - a lot of the parents here swear by it 🙂
 
Hi Maria

I know exactly what your son is going through. Even though I was diagnosed at the age of 8, and am now 21 - I went through a stage from the age of 16 or so, up until I turned 20 where I wanted nothing to do with diabetes. Yet I hid it from everyone. They all thought I was ok, and I wasn't :(

Maybe it would be good for your son to sign up here? There are a lot of young people on here who will have some idea of what your son is going through, and also a lot of parents who will be able to help out too, along with a few of us who have lived with the D for many years.

Feel free to drop me a PM if you have any questions, and don't be afraid to ask questions here either 🙂 Everyone is super lovely and helpful
 
Thank you for the welcomes 🙂. I have the book recommended. It is very good, yes. I don't think my son would come onto the forum - he wont even read the teen newsletter I subscribed to for him from Diabetes uk lol. He recently did a practice trip for DofE silver - 3 days of hill hiking. He managed it fine, but did no tests the whole trip! He wont test in front of his friends. They are aware he has diabetes but I dont think he talks about it.

Maria
 
welcome to the forum ...we have quite a few teenagers and teenagers at heart on this forum I am sure you'll get lots of advice and support x
 
maria0268 said:
Thank you for the welcomes 🙂. I have the book recommended. It is very good, yes. I don't think my son would come onto the forum - he wont even read the teen newsletter I subscribed to for him from Diabetes uk lol. He recently did a practice trip for DofE silver - 3 days of hill hiking. He managed it fine, but did no tests the whole trip! He wont test in front of his friends. They are aware he has diabetes but I dont think he talks about it.

Maria
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Maria, is it because he is in denial, or because he feel awkward about it in front of his friends/other people? It would be such a help if he could meet or talk with others in his position so that he doesn't feel 'different'. Even I had some problems overcoming that feeling, and I was 49 when diagnosed! It might be worth enquiring about DAFNE education courses (or similar) as this woulf bring him into contact with other Type 1s and that can really be a turning point. What sort of insulin regime is he on?
 
Northerner said:
Maria, is it because he is in denial, or because he feel awkward about it in front of his friends/other people? It would be such a help if he could meet or talk with others in his position so that he doesn't feel 'different'. Even I had some problems overcoming that feeling, and I was 49 when diagnosed! It might be worth enquiring about DAFNE education courses (or similar) as this woulf bring him into contact with other Type 1s and that can really be a turning point. What sort of insulin regime is he on?
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Sounds very much like the denial I had O.o and i was late to the party with it!

finding this place definitely helped me, and it is always really useful meeting other T1s too 🙂
 
Hi Maria

Not sure it's going to be useful, but sympathise with how you must feel watching your son. It's very annoying to see someone you love refusing to look after themselves, and yet you can see his motivation for doing it: at 18, "being different" and "showing weakness" is a difficult thing to do. I don't think young people in our society have many positive role models who have illnesses: illness is often hidden away or not acknowledged.

I can't come up with one convincing idea as to how to help, although if my teenage memories are anything to go by, the more my Mum tried to 'make' me do something, the more I'd withdraw from her. If I told her something and she was shocked, then the next time I wouldn't even tell her.

So the only bit of advice I can give you is to be as unjudgemental as you possibly can: but I'm not saying that because you sound judgemental. Actually, you sound like a brilliant, supportive mother.

It must be really tough for you.

I was only diagnosed recently (I'm 27) and found it extremely tough; going through that at the same time as 'being a teenager'.... crikey..... thank goodness he has someone supportive behind him.
 
Hi Maria

Welcome to the boards. I agree with everyone else -- the best help would be if he could get here himself...or through Facebook... It may feel less intimidating somehow. Tom et al, being an awful facebooker myself I have no idea about this but you will... are there type 1 groups you could invite him to? Or some such? He *may* do this even if he feigns disinterest Maria, or doesn't tell you, or thinks you're mad etc... Facebook feels quite private in that way.

But in a way this is as much about you? And it really, really looks like you are doing all you can for him right now, and even more so, because you are seeking out the boards etc. You can't save him from himself though...and I have to say, it's a time I dread encountering myself. You must be beside yourself.

I'm wondering if a chink of light might be in approaching things as not trying to *change* him or *make* him do things (eg test) -- but simply place as much information as you can in front of him. Print out the front page of this forum. Give him Tom's information. Etc. Tell him you're not expecting him to do anything in particular, but if he ever feels like it, these might be places to start. It's important he know that he doesn't have to be a 'good type 1' in order to be in touch with people: he can come to the party just as he is.

I think I'm right that on my blog you mention the pump -- if you can possibly get it, this change of treatment may give him renewed energy for it all. The continuous glucose monitoring doesn't remove the necessity to test by any stretch, but it does reduce the number of times per day.

However -- if he's not testing, being on the pump can be dangerous for him. Does he want the pump? If so, he will need to be testing? This may be a carrot?

I'll say this on my blog too -- but thank you for following the links to here and elsewhere. It takes guts, and I'm so glad to see you.

All the best,

Patricia
 
Northerner said:
Maria, is it because he is in denial, or because he feel awkward about it in front of his friends/other people? It would be such a help if he could meet or talk with others in his position so that he doesn't feel 'different'. Even I had some problems overcoming that feeling, and I was 49 when diagnosed! It might be worth enquiring about DAFNE education courses (or similar) as this woulf bring him into contact with other Type 1s and that can really be a turning point. What sort of insulin regime is he on?
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I think its probably a bit of both. He has been offered a place on the DAFNE course but flatly refuses to go. We did do a carb counting course after he was diagnosed which was great, but the kids didnt really interact during that. I know it would help him a lot meeting other type 1s, but, so far, he doesnt want o be involved. His last HbA1C was 11.8 - he confessed to me after clinic that he hadnt been taking his pen out with him at all, to school, or out with friends. He just injected whenever he got home :(. That has improved now, so fingers crossed for his next one.

He is on Lantus and humalog btw, in theory injecting Humalog when required!

Maria x
 
Thank you so much for everyones replies. I'm so glad I joined 🙂. Thats good advice on not being judgemental Lizzzie. He gets enough lectures when we go to clinic, without me doing it too! I know he has to want to improve things himself. I wish he could have gone on one of the diabetes uk holidays, but he was a bit old for the family ones when diagnosed and wild horses couldnt have dragged him to one of the teenage ones lol.

To be honest Patricia, I try not to think about it too much, as when I do, I just get upset. I have had friends say they dont know why I'm so worried, as its a treatable condition blah blah, no big deal etc. Yes, I know there are worse thing, but as you all know too well, its not 'no big deal' at all.

I will have a go with the Facebook approach anyway, you never know!

I did ask my son if he would be interested in a pump, but the fact of having to wear it, puts him right off. For the moment he wants to carry on with injections. I think the fact that he has never had a serious hypo, or hyper makes him more blase about looking after himself and testing. He says he can 'feel' whether he is high or low, which obviously he can to an extent, just not accurately enough for good control!

Thank you again, especially to Patricia for inspiring me to join in the first place,
Maria xx
 
maria0268 said:
Thank you so much for everyones replies. I'm so glad I joined 🙂. Thats good advice on not being judgemental Lizzzie. He gets enough lectures when we go to clinic, without me doing it too! I know he has to want to improve things himself. I wish he could have gone on one of the diabetes uk holidays, but he was a bit old for the family ones when diagnosed and wild horses couldnt have dragged him to one of the teenage ones lol.

To be honest Patricia, I try not to think about it too much, as when I do, I just get upset. I have had friends say they dont know why I'm so worried, as its a treatable condition blah blah, no big deal etc. Yes, I know there are worse thing, but as you all know too well, its not 'no big deal' at all.

I will have a go with the Facebook approach anyway, you never know!

I did ask my son if he would be interested in a pump, but the fact of having to wear it, puts him right off. For the moment he wants to carry on with injections. I think the fact that he has never had a serious hypo, or hyper makes him more blase about looking after himself and testing. He says he can 'feel' whether he is high or low, which obviously he can to an extent, just not accurately enough for good control!

Thank you again, especially to Patricia for inspiring me to join in the first place,
Maria xx
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Hi maria - that is EXACTLY what I used to tell my parents. "Oh its fine, I can feel when I'm high or low". I didn't check my BGs for about 4 years straight - and unfortunately now I'm suffering with things that come from that. But I know full well what he's going through having been in that situation myself - I wouldn't inject or take my stuff out with me, and I got very blase about the whole thing. Feel free to send him way way on facebook or msn and I really don't mind chatting to him about his diabetes. Or failing that direct him to my blog www.talkingbloodglucose.com - as someone who is a round about his age, I like to think that maybe if he read some of the stuff on my blog then it might help 🙂

I can pm you details of my facebook and msn if you like? There are also a few groups on facebook he could join 🙂
 
Hi Maria

Welcome to the forum. I wish I could suggest something to help your son. I was diagnosed when I was 19 so I had gotten past the rebelious teen stage by then. If you could get him to join I think that would help him immensely x
 
Hi Maria,
Ive only just joined but pretty much been through the same thing with my son. Hes now 21, having had type 1 for 7 years and I feel that he is just turning the corner. He seems ready to take everythiing seriously, and has asked to go on carb counting course etc. Its been a struggle, and still is. He is only just starting to test sugars , and of course every hospital appt, doctors just say he is an adult and has to manage it himself. This never helped me very much.
 
Hi again Maria. Was thinking about you mentioning the Broze D of E award, and I remembered the site Mountain Active Diabetics, to add to your list of possible sources.
I climb a but, but there are some really hard-core mountaineering diabetics out there: might be worth googling.
 
Hello Maria,
I can see you've already had some offers of advice from many more qualified than me.
I would only add that i was diagnosed 25 years ago, at the age of 21, so i guess i didn't have to go through those teenage years. I was already married, had a mortgage to pay and had just been made redundant!
What does your son do for a living, what are his ambitions, does he have a girlfriend to impress and/or things he wants to achieve in life?

Somewhere under one of those subject headings lies the answer to getting him motivated to start looking after himself more and realising he can have the 'best of both worlds' - diabetes and a very productive and successful life!🙂
Very best of luck with it and if he needs any support from an oldie, i'm very happy to try and help.
 
CarolK said:
Hi Maria,
Ive only just joined but pretty much been through the same thing with my son. Hes now 21, having had type 1 for 7 years and I feel that he is just turning the corner. He seems ready to take everythiing seriously, and has asked to go on carb counting course etc. Its been a struggle, and still is. He is only just starting to test sugars , and of course every hospital appt, doctors just say he is an adult and has to manage it himself. This never helped me very much.
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Hi Carol - that is encouraging to hear - I suppose I should be thankful he does do some blood tests and lets me test and correct (if needed) every morning. Your son must have been diagnosed at much the same age as James - just starting puberty and having that to deal with too... I used to try to encourage him to read stuff and learn more for himself, but I cant make him, any more than I can make him get his coursework in on time now!! lol. It broke my heart when he used to say he would just kill himself if he got any complications later from not looking after his blood sugars :(
The hospital has been very good - the diabetes nurses have been ringing every 2 weeks to go through his numbers and trying to encourage him to do tests during the day which is where it must all be going too high. We are going to the transition clinic atm which is fine, but the adult clinic doesnt seem to have such a good reputation. The first diabetes nurse we met when James was admitted, was really scary! She was from the adult clinic and went on and on about what James would not be able to eat any more - talk about hardcore! That was just what we didnt need while still reeling from the shock...

Sam and Tom - I gave James your details and offers to talk, and printed out some of the replies from here for him. Up to him now, but thank you again for the offers.

Thank you Lizzzie for the site suggestion - I will look that up. I have read about various incredible people in Diabetes UK so I know anything is possible with enough preparation.

Maria xx
 
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