Help! DS with type one diabetes and frazzled

[labrawoman]

Is there anyone else out there dealing with a teenage type one diabetic?

DS will be 14 in March. He was diagnosed in May 2008 and since then we have both learnt so much and, generally, he has coped with it superbly. But the blood sugars never seem to be where they should and on the last check up the Consultant suggested he wasn't growing on the basis that he had been on the 91st percentile but is now on the 75th percentile.

Although my brain tells me it was a nonsense suggestion (all my family grew early and DS's dad isn't as tall as I am and would be on the 50th percentile for men) it was the last thing I wanted to hear emotionally.

Both DS and I have worked really hard to think through everything he eats and his lifestyle and get so frustrated when the blood sugars are not where we think they should be.

I know it is irrational to think we can control it all but sometimes one or other of us gets angry at the other. Maybe I need to get a punchbag to put up somewhere?

Just wondered if there was anyone else out there going through this?

Didn't want your thread to go unanswered. Is there a diabetes nurse attatched to your GP's surgery. She may be able to advise on support groups for adolescents. It can't be a lot of fun for him and certainly not for you.

Thsnk you. I remember when he was diagnosed thinking about this but it got forgotten. There is a lovely diabetes nurse at the doctor's practice and she has suggested he can contact her direct with his blood sugars for advice but it has never got off the ground. I think talking to others his age could be really helpful, I will follow up.

Hi, yes I have a DS (13) and DD (11) both with Type 1. What insulin regime is your son on? What?s his A1c?

Don?t like the word ?control?, it?s an ever-changing concept where diabetes is concerned ? one moment you think you?ve cracked it, the next it?s all gone haywire again. It?s a continual process rather than a one-off battle.

Good DSNs are worth their weight in gold, I would definitely follow that up and start talking to her on a regular basis. She might also be able to put him in touch with other local teenagers who have Type I.

I wouldn?t take too much notice of the growth thing, as far as I?m aware there isn?t any proven correlation between height and diabetic control (birth size, yes, but not adult growth rates). Was it his diabetes consultant who said this?

Hi Mattellie, I feel a bit humbled that you have two children who are type one. I agree about control, it isn't something you can "control" as the body is a curious thing, all sorts going on especially in teenage years I would say. It is the word used all the time though and there are times we just feeling that we are failing and it gets a bit much.

He uses novorapid in the day and levemir at night. Is A1c the 3 monthly average blood sugar reading?

Yes it was the Consultant that wrote to my son's doctor to say he wasn't growing. I feel there is quite a lot missing in the understanding we have with him which is a real shame. I feel it was an incorrect suggestion as I can virtually see my son growing before my eyes. Hmmm.

I got a call from the diabetic nurse attached to the Consultant today by coincidence putting back the next review and suggesting we give her a call which I will do.

Yes, sorry A1c is the 3-month average reading, got so used to all the jargon now Novorapid and levemir is a good combination ? they?re pretty much the best injectable insulins on the market right now.

Surely all teenagers go through periods or growing and not growing, don?t they? If your instinct tells you something different from the doctor, I?d always go with your instinct, personally. Doctors may understand diabetes, but they don?t know much about your diabetes, or your child?s.

Everyone reacts differently, to food/drink, to exercise, to insulins, you name it. It?s a continual learning process.

And you certainly are NOT ?failing?. You are doing the best you can to help your son cope with a complicated and ever-changing condition. I get so cross when medical teams criticise and cause concern rather than support (you can probably tell )

Hi, my son's 14 and was diagnosed July 2008.

It's so frustrating isn't it? We've been through the angry bit too (both of us) and it's horrible. It's not just the PITA of bloods and counting and all that palaver, it's the emotional trauma too.

I think when they are adolescents, the goalposts change constantly and it's difficult to keep them on an even keel, a really tricky balancing act.

I agree with Mattellie, I get so cross when you go for the 3 monthly check and you (well at least I do) feel like you're being criticised when you are doing your best. I actually find it quite intrusive.

I don't think you need to worry about what he said. IMO I think he's talking crap.

Hi, i'm not dealing with a teenage type 1 was i was one! .... My levels were really unstable during my teens, more so than at uni and almost as much as they were when i was pregnant! ... Think a lot of it was due to hormones and also me rebelling against the diabetes

I sometimes get annoyed at the hospital when they nitpick, it's all easy in theory but they're not the ones living with this condition ... sounds like you're doin a great job, hang in there!

His blood sugars seems to be hitting normal levels again after being high (and then having hypos) for so long. I agree with everything said. I was on a downer and these posts have really helped me.

Good to hear things have settled a bit for your DS.

Have you been taught how to do fasting blood sugars? They?re a bit of a pain, but we have found that they give us invaluable information.

But I think basically diabetes in teenagers is a nightmare because their levels change all the time so you can?t be proactive, all you can do is react to what is happening and adjust dosages accordingly.

Sounds like you?re both doing great to me.

Hi,

I am an adult type 1, hope I can be of some help.

Diabetes UK runs holiday camps for teenagers to meet others and have fun, I found them great when I was a teenager, to realise there were others and lots of help on hand.

They also do family support weekends if you wanted to go too.

For up and down levels you could ask your DSN if you could borrow a continuous glucose sensor - you wear it constantly for 3 days and it gives a reading every 20 mins - so you an really see patterns emerging.

I found levemir a nightmare, have you tried lantus instead? Or if you can get him a pump (I finally have one - yay) things should be easier.

Good luck! I think teenage diabetes is the hardest stage and it sounds like you're doing a great job.

Hi there, my ds is nearly 10, so I'm not having the issues you're having yet - but some rapid growth spurts which we're struggling to keep up with even with an insulin pump (I heart my animas!).

These guys have a mailing list that's well worth joining, it's been a source of valuable support for me:

www.childrenwithdiabetesuk.org/index.php?page=email-and-mailing-lists

I would strongly suggest that you set up a googlemail account specially for it as it organises your mails, and otherwise your usual email account will be swamped.

All the best x

Thanks Slashtrophe and bramblebooks these are really helpful posts, have just spent an while on children with diabetes website and reading some stuff on there makes me realise it isn't so strange to be finding it tough at times. I think our problem is a bit of a breakdown with communication with the Consultant and his team, the "not growing" letter sent to my doctor has hacked me off bigtime. We are maybe a bit unusual in that my family excels in sport and I have a very, very active son with an immense appetite. I get no cooperation or back up from my son's father (won't talk to me) and I sometimes feel desperate due to the amount I spend on food. When I say big appetite I mean finishing off a chicken stew with 1000g of chicken in it and his sister had only had a modest portion, none left for me when I cam to have some (he didn't realise I was going to eat later).

HI labra, glad you found the site useful. Do consider joining the mailing list - some families on there have children who excel in sport and play competitively. They have been an invaluable source of support for one another. (but do use the googlemail account option for this, seriously I was swamped on my standard account!! - equally if I feel like talking diabetes, it's all in one place, which suits me.