Newly Diagnosed Child

[mariamack1]

My 12 year old son was diagnosed Type 1 Diabetic two months ago. We have been given loads of literature to read and websites to visit. Luckily when diagnosed he was not in bad health, the early signs were picked up quickly. So straight onto insulin. The first few weeks seemed to go well, although extremely daunting. A couple of weeks ago he had a cold and everything was messed up. I look at all the information about future problems and it scares the hell out of me. It seems that if his levels aren't perfect all the time then heart disease, kidney failure are likely. Trying to get levels right before every meal is really difficult, even though I calculate perfectly all his carb intake. I think what I want to know is, will it get easier to stabilise bg levels, and am I over-reacting to possible future medical problems? I know it's early stages but there is nobody I can talk to, feel quite alone with this, although the nursing team are helpful with the immediate practical things.

 

[Northerner]

Hi Maria, welcome to the forum 🙂 Sorry to hear about your son's diagnosis, but try not to worry (easy to say, I know). Things DO get easier as you gain more experience of all the different situations and factors that may affect his levels. It's very much early days for you at the moment, and there is a big learning curve, but it sounds to me like you have got off to a very good start. It isn't possible to achieve perfection all the time, so try not to be down-hearted if things seem to be difficult at times, particularly when illness comes along to mess with things. You all just need to try your best and try and learn from any unexpected situations where he might be higher or lower than expected - always look for possible causes so that you can handle things better the next time. It is prolonged poor control that may lead to complications, and the occasional high or low will have little effect.

I wonder, have pumps been discussed at all?

 

[am64]

hi and welcome from me too ...we have many parents/carers on this forum who i'm sure will give you some more assurance and advice ...and remember no question is regarded silly here 🙂

 

[delb t]

Hi mariamack1-Hang on in there it will get easier- there is so much info to take on board to start off with ,the honeymoon period varies so much from person to person ,ratios change all the time etc - as soon as you see a pattern does your team change his ratios? ours changed often in the early days- dx for a year now- we can only try and do our best carb counting ,testing and more testing !!! things can get you down I know it was constantly on my mind in the early days but you will gain confidence as you handle each new hurdle -even now we get random numbers for no apparent reason- youve joined a fab forum -welcome again

 

[bev]

Hi Mariamack1,

Yes - it does get easier.🙂My son (14) was diagnosed at 10 so I know what you are going through. The complications only happen with prolonged poor control - so try not to think of that for now. The 'good' news is that if there was ever a 'good' time to be diagnosed it is now rather than twenty years ago! The technology has moved on and you can act on results as they happen which takes away a lot of the risks of complications. As long as you try to keep the HBA1C under 7.5% this will help to rule out complications. My son went onto a pump after 9 months as we couldnt keep decent control on injections and now he is growing and producing hormones we really need the pump. Have your team mentioned a pump to you? Have you joined the CWD list? It is a group of parents of children with Type 1 who help and support each other and we meet a couple of times a year and the children/teenagers all bond together and have a good time. Sadly your not alone with this condition - but you will get lots of help and advice both on here and the CWD list.🙂Bev

 

[Northerner]

Here is the link to Children with Diabetes 🙂

 

[Pumper_Sue]

A couple of weeks ago he had a cold and everything was messed up. I look at all the information about future problems and it scares the hell out of me. It seems that if his levels aren't perfect all the time then heart disease, kidney failure are likely. Trying to get levels right before every meal is really difficult, even though I calculate perfectly all his carb intake. I think what I want to know is, will it get easier to stabilise bg levels, and am I over-reacting to possible future medical problems? I know it's early stages but there is nobody I can talk to, feel quite alone with this, although the nursing team are helpful with the immediate practical things.

Hi Maria,
when you find the secret of perfect numbers all the time let the forum members know It's impossible to have perfect no.s all the time so no 1 rule is don't stress over it. Just do your best.
Things will be very topsy turvey due to what is known as the honeymoon period whilst his pancreas splutters and spurts out insulin or not as the case may be.
Teenage hormones are b*gger as well. So don't get down or defeated by it all, things will settle down and there is light at the end of the tunnel.

Complications... you always hear the negative side of diabetes which is a dreadful shame. There are forum members who have had diabetes for 40,50.60+ years with no complications. 🙂

It sounds to me as if you are doing a great job. (((((((hugs))))

 

[trophywench]

Here's another 40 year T1 to say What complications? to you!

(Background retinopathy since mid-1990's, no treatment necessary or offered, nowt else)

Yes indeed, it could still happen - but I'll cross that bridge when I come to it thanks, not spend my life worrying about the shark and piranha infested waters flowing under that bridge before I have to. Except of course, I do curb the carbs.

I have no desire to be overweight - and I have certainly been in the past purely because I ate too much c**p - although I did shoot for it! And coincidentally it's good for my D control - so that's a very welcome bonus I always think.

Insulin doses are always a moveable feast however old you are and however long you've had D. Each person needs what each person needs and that's how much the person takes. Nobody else can dictate that. None of us on here is an expert re diabetes, but some of us are fairly expert at treating our own diabetes - I know certain stuff and I may have had a similar experience to someone else and say what what worked for me, but it doesn't mean it will work for anyone else, although it could be a place for that person to start from - if it sounds feasible!

This is a marathon, not a sprint and what's more some of it's uphill - so take baby steps up the hills and thus arrive at the summit quicker than if you tried to run - and in a fit state to enjoy the vista from the top!

 

[Tina63]

Hi Maria, and welcome from another parent. My son was diagnosed just before his 16th birthday, almost 2 years ago.

I can completely identify with you over the 'feeling quite alone with this'. I too had a great team behind us in the early days, phone numbers and email addresses I could use as and when, and we had loads of home visits in the early days, but after the first couple of months we really were left alone with it, and certainly not introduced to any other families with the same problems. I know I bored my poor friends to tears with it all (and still do if truth be told!) but there was so much going on inside my head I just needed to talk. Finding this forum has been a Godsend. Everyone is so friendly, and knowledgable, I have gained so much insight and understanding, it has been brilliant.

I do understand your feelings of fearing for your son's future too. My son complied perfectly at the start and we managed together to get his levels very good overall, but then due to various factors his control went right out of the window. He is in a prolonged period of denial/rebellion at the moment, so I really do fear what damage he is doing to himself, but at almost 18 now, there is little I can do to change things.

All I would advise you at this stage is to keep the lines of communication open between you and your son, but do be prepared for 'burnout' a bit further down the road. Do encourage him to talk about his feelings if he starts to appear down over it all. Is it worth asking your nurse if she can find another local family who would be prepared to meet up with you? My son wouldn't hear of that type of thing, but then he was significantly older. I think it's important for you as well as your son to be able to talk to someone else in the same position. You learn so much more from others living with the same issues.

Keep your chin up though, your son is the same boy he was before, just extra special now

Good luck with it all.

Tina x

 

[mariamack1]

Thank you all so much for your advice and understanding. I think I am trying too hard to achieve perfection, now I realise that reasonably good control is perfection enough - for now. My younger daughter has epilepsy, which is controlled, and I foolishly thought I would manage the condition the same. I know it's not and it's an every day balancing act. I worry about everything. The 5mm needles we use seem to be hurting him a little, so the nurse suggested 4mm. We tried them, they don't hurt, but now I worry that they might not be deep enough! If there's something to worry about, I do it! However, my son is taking it all in his stride, and he is wanting to try the pump, although the nurse has suggested waiting a few months. It is a great relief to have someone to talk to about it all, even if it is faceless communication through a message board. I have no family or close friends so this is my saviour. Thank you all so much x

 

[Pumper_Sue]

Thank you all so much for your advice and understanding. I think I am trying too hard to achieve perfection, now I realise that reasonably good control is perfection enough - for now. My younger daughter has epilepsy, which is controlled, and I foolishly thought I would manage the condition the same. I know it's not and it's an every day balancing act. I worry about everything. The 5mm needles we use seem to be hurting him a little, so the nurse suggested 4mm. We tried them, they don't hurt, but now I worry that they might not be deep enough! If there's something to worry about, I do it! However, my son is taking it all in his stride, and he is wanting to try the pump, although the nurse has suggested waiting a few months. It is a great relief to have someone to talk to about it all, even if it is faceless communication through a message board. I have no family or close friends so this is my saviour. Thank you all so much x

Hello again Maria,
Mum's always worry 🙂 My Mum aged 76 still worries about me even though I left home 35 years ago and manage my diabetes just fine. 😉
Good for your son wanting to try a pump. His nurse is quite right though it's best to get used to injecting and counting carb properly and show that he can and will blood test as needed. Think of it as a trial period, and keep on mentioning a pump each time you go to clinic 🙂
Glad you are feeling a bit happier now.

 

[Twitchy]

Hi Maria,

Just wanted to add to the reassurance - I was diagnosed at 11months old in the late 70's - back then control methods were very crude compared to today & I'd agree that things are far more positive, with more flexibilty than ever now. I've had D going on for 34 yrs now & the only complications I've had had been pregnancy related, with my eyes. (so unlikely to be an issue for your lad! 😉) A bit of laser treatment & an op later & my vision is fine, I still drive (have a license too of course! 😛) and am still working in a professional technical job. What I'm trying to say is that even if things do go off the rails a tad, it's not necessarily the end of all hope. It's going to take a fair bit of work & effort, but you'll all get there, I'm sure, & it won't be long before you'll be offering help & reassurance to others... 🙂

Take care,

Twitchy

 

[Tina63]

The 5mm needles we use seem to be hurting him a little, so the nurse suggested 4mm. We tried them, they don't hurt, but now I worry that they might not be deep enough!

4mm needles are fine. My son was given 6mm and 5mm on first day in hospital, then on the second day a DSN came and spent hours with us and straight away said "You don't want those, the 4mm are so much better, so much more comfortable to use" so my son has used 4mm ever since, no problems at all. We have an almost full box of 6mm and an almost full box of 8mm 😱 sitting in the cupboard 'just in case' but have never needed either. The insulin only has to get just under the skin, so 4mm is fine, honest!

Do keep coming on here to let off steam and to ask any questions you have, no matter how trivial they seem. We all do it. You know you will get sound advice from people who live with it or people like us, parents living with a child with T1. The understanding from others is second to none.

Tina

 

[mariamack1]

Again, thank you all so much, you are wonderfully supportive people for both my son and I 🙂🙂🙂