Son newly diagnosed

[ladybird777]

My ds is 15 and newly diagnosed with diabetes. He went in hospital last Friday when I realised something was wrong and got a diagnosis the same day. He took to doing his own injections, finger pricks , carb counting like a duck to water. He's still doing everything himself now home but I can tell denial, anger and pure rage at everything is setting in. It's all understandable and I feel his frustration and pain but feel helpless cos nothing I say will make him feel better. He's angry, he wants a new pancreas, ( someone on xbox said they might be available at some point ), he hates finger pricking more then giving himself insulin. He has a multiclick lancet but says his fingers are sore. He is testing many times a day cos he has had a series of hypos and isn't stable yet. I'm not sure why he's dropping so often but he's very active and I don't think he's eating enough. Consultant has said his basal insulin may need adjusting too. Also the monitor he has won't let him put his carbs in unless he's tested his bs so he even has to test before small snacks. It's putting him off eating. He only weighs 6 stone 9 and is 5 foot 5 so he needs to eat. I did wonder if we could just work out the insulin for snacks and not test if we knew what his bs was at the last meal? His carb counting is a simple 1 unit to 10 grams.

I test him at 2 am every night cos he's been dropping low overnight but last night he didn't. He hates it. Tonight he locked his door. Part of me thinks what the worst can happen if he goes low but I know I need the peace of mind he's OK. Tonight I just feel flat and exhausted and we 're not even a week in yet.

He's had enough. This is for life. It seems overwhelming now.

 

[robert@fm]

Welcome to the forum (and to the club nobody wanted to join), but sorry you have to be here and that you and your son are having these early problems.

I don't know much about T1 (obviously), but the problem of the dumb "smart" meter not allowing a carb entry without a BG test has come up on this board before. With any luck somebody will remember the thread and link to it.

As for fingerpricking, I suppose your son's lancing device is adjustable? They usually are (except the single-use disposable ones), so perhaps your son could try setting it to the minimum depth and seeing if that still produces a blood droplet (it may require a gentle squeeze, as the setting I use does, but that's better than pain caused by a higher than needed setting.) If it fails to work the first time, he can always re-arm the pricker using the same lancet (again, this is usually possible) and try again, perhaps turning the depth up one notch, until he finds the minimum depth that works for him.

Others with more experience will be along, if not tonight then in the morning. In the meantime, feel free to ask anything — no such thing as a silly question here! 🙂

 

[robert@fm]

Found the thread!

If your son's meter is an Accuchek Expert, or works in the same or a similar way, this thread might be of some help:

http://diabetessupport.co.uk/boards/showthread.php?t=44647

 

[Northerner]

Hi ladybird, welcome to the forum 🙂 Very sorry to hear about your son's diagnosis One thing to bear in mind is that it is VERY early days for you all, and the adjustments to insulin will take a while to get right. Most people start with fixed doses, but hopefully before long you will be taught how to 'count carbs' so that you can adjust the fast-acting insulin with meals to closely match the amount of carbs in what he eats. If you want to know what it entails, have a look at the guide from Diabetes UK here:

https://shop.diabetes.org.uk/usr/downloads/Carbs-Count-2012-reduced.pdf

As Robert suggests, the multiclix lancet has an adjustable depth, so try different depths. Also, he should use the side of the pads of the fnger, not the centre, ideally with warm fingers. Wait a second or too after pricking before gently squeezing the blood.

I would highly recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas, an excellent resource and reference guide which covers all aspects of living with Type 1.

I can understand his reluctance to be tested by his mum in the night - could you persuade him to do his own test? We normally drop to our lowest level at around 3 am, so if he sets an alarm for this time to test that would be a good idea whilst you are trying to get his basal dose correct. What sort of levels is he waking to, and before meals? I had a problem with night hypos when first diagnosed due to my basal dose being set too high, but after a couple of weeks I had things more of less correct and understood things much better, so night time testing became less frequent, so it's not going to be forever, just when he feels things are changing. Are you in regular contact with his team to adjust insulin doses?

Things will get better! This is a massive change to all your lives, and the amount of information you have to take in can be overwhelming, but it does get easier and diabetes doesn't have to stop him doing anything, it will just take a bit more planning ahead. It's bound to dominate your lives in the beginning, but there will come a time when things are more settled and it will be him controlling diabetes, not the other way round. Please ask any questions you may have, there is a wealth of knowledge and experience here 🙂

 

[Copepod]

Sorry to hear that you and your son need to join this forum.

When you say his monitor won't let him input carbs without a blood glucose reading, does that mean that the meter is deciding what insulin dose to recommend?

That is the right strategy when well established with diabetes, but early days after diagnosis, known as honeymoon period, as when pancreas still produces some insulin, somewhat unpredictably. If he is having lots of hypos, then it does sound like his basal insulin needs to be adjusted as soon as possible, so aim to speak to someone today. Also ask about adjusting carbohydrate to bolus insulin ratio - it may need to be adjusted, too.

As well as consultant, does he have a diabetes specialist nurse, so that he could get more support by phone, regarding doses, food etc. Many diabetes staff say that if a snack contains less than 10g carbohydrate, then there is no need to dose with insulin, so no need to test blood glucose before eating.

Finger pricking is sore, but, as Robert@fm says, adjusting lancet depth can help, as well as using side of finger, never tips or pads, reduces pain slightly.

 

[Hanmillmum]

Hi Ladybird - welcome to the forum 🙂

I'm sorry to hear your son is struggling but not surprised as it is a huge shock to the system to be given a lifelong diagnosis and then all the information and adapting that goes along with it It does get easier!

If your son enjoys snacking and is an active teen he may be suitable for an insulin pump along the way which allows more flexibility for eating and activity, my daughter has had hers since before her 2nd birthday and we would not be without it. Regarding finger pricking, lowest setting and side of the fingers and remember to rotate.
Are you in touch with his team to see if they can reduce his dose/s in response to the hypo's he is getting? My daughter's insulin was reduced considerably in the first few weeks due to the honeymoon period. It will settle down and be a bit more predictable as time goes on.
🙂

 

[Redkite]

Hi and welcome to the forum 🙂. Sorry to hear about your son's diagnosis - I know just how it turns your lives upside down, as my son was diagnosed when he was 4. Do get the Ragnar Hanas book - it's written in a very upbeat optimistic style, and really helps get to grips with everything you and your son need to learn.

It's early days, so do keep in frequent touch with your DSN to talk through your son's BG results, food eaten and insulin doses, and he/she can advise on changes to the basal or bolus insulin. As time goes on, you and your son will get a good feel for this yourselves. Night testing .... I test my son's BG every night, as he does not wake up when hypo. Although very rare, there have been cases of seizures, brain damage and deaths from severe, prolonged nighttime hypoglycaemia, so I'm not prepared to take that risk. The problem with the teenage years is that growth hormones interplay with insulin - when they are having a growth spurt, the body becomes more resistant to insulin and you need higher and higher amounts of basal insulin overnight to prevent high blood glucose levels. Then, the growth spurt suddenly finishes (unbeknownst to you!) and suddenly they have way too much insulin circulating and get bad hypos. The majority of people will wake in the morning feeling dreadful, but a tiny minority never wake. Sorry to sound bleak but best to know the risks and therefore be able to prevent them.

Aside from that, please be reassured that with a bit of planning, there is nothing you can't do - my son lives life to the full, and diabetes is just a small part. 🙂

 

[delb t]

Just wanted to welcome you - my son was dx at 15 now 17.The early days/weeks/months are hard but it will get easier- honest!.Ok when we were dx over 2 yrs now we had to diary all our results[still do] and ring every few daysOur ratios changed continuously...so you need to be in contact with your team quite regulary and they will advise changes to be made.Push at clinic for advice on sport although this is pretty much trial and error.Some finger prickers are kinder than others ..H has his at school now so cant remember which one he has.And as Redkite says I agree it hasnt stopped my son doing anything..more planning definately... but he was dx GCSE year got fantastic results runs/ski's/half marathons /footy and booked first lads hol away{!] your son will go through various stages of acceptance- I think we as parents do too but you will get there.Welcome again

 

[Redkite]

Lads' holiday 😱😱 I have all this to come!

 

[delb t]

Best not mention the 4day music festival in Cornwall!!! Iwill be grey!

 

[ladybird777]

Thank you so much for all the welcomes and your advice and comments. It really helped a huge amount. 🙂 I don't feel so alone now. He's already carb counting but I did as suggested and spoke to the DSN this morning and she advised me to lower his Lantus and knock a unit off the insulin he has pre meal and pre snacks. If that doesn't stop the majority of the hypos they are going to up his ratio of carbs to insulin on Monday. The glucose meter sets the units of insulin based on carbs put in. Thanks for the link to the thread about the meter and the book. Also the DSN says he doesn't have to finger prick for snacks, just pre meals and bedtime and if he feels off. His lancet has different depths but he says it only works on the deepest. Maybe it will be easier with practice and he's pleased the amount of jabbing has cut down. I have to keep remembering this a boy who has never been to a GP in his life and wouldn't even take Calpol so he's doing really well.

I think him testing himself during the night is a good idea for his independence but he doesn't wake up when he's hypo and last night ( he unlocked the door ) he was at 2.7 at 1.30 am. I normally only test him at 2 - 3 so I'm glad I went up early. It took me 3 goes cos each time I finger pricked him he yanked his hand away and wiped the blood off on the sheet! I'd worry he didn't wake up to do it. I know someone whose child died during a hypo so I'm paranoid. I know it's rare but it bothers me. He's been waking up to 3.3 but that after hypo treatment during the night and sometimes 4. His lunch pre meal is usually better - around 5, dropping again at teatime. In hospital his levels were fine but he was sat in bed most of the day.

An insulin pump has been suggested for when he is used to his diabetes and confident with handling it. His consultant said he's talk about it when we see him next.

He's been out on his bike today with a friend and he was fine while out and when he came home he was still at 4.8 after peddling for an hour. Today he not had a single hypo so I think the changes are working. 🙂 He's happier in himself today too.

 

[Northerner]

What sort of levels is he going to bed on? I had problems when first diagnosed and used to have a slice of bread and peanut butter before bed to help keep my levels up if they were below around 7.0. Eventually, I got the dose more or less right - for a while! 🙂

He's using the same lancet device as me - it's actually one of the best there is (we've had polls here where it has proved the most popular!). I have mine set at depth 2. I think that, with practice, he will get better at it so it doesn't hurt so much.

I hope the changes give him much better, more stable levels.

 

[Redkite]

Glad to hear the DSN has recommended reducing the Lantus. I'm sure he must be feeling better and happier without all the hypos - they really drain the energy out of my son. Great he's still going off out cycling with his mates - just remind him to take hypo remedies and phone wherever he goes 🙂

 

[ladybird777]

The Lantus being reduced and knocking a unit of insulin off every meal seems to have done the trick 🙂 He's only had one hypo since and that was cos we over estimated the carbs in his tea. He's going to bed around 8 at the moment. Last night he had Pasta Bake for tea and held at 5.6 until lunchtime today ( he wasn't hungry at breakfast) which I was very pleased about. Tiring checking all night tho.

The lancet seems to be fine for him now. I persuaded him to set the depth to a shallower setting. The one thing he won't do is record his carbs on the glucose meter. He records his blood sugar levels but refuses to put the carbs he's having into the meter as he can work them out in his head and he is having less insulin then the meter tells him anyway so thinks it's pointless. I know the DSN won't be happy about this but he needs to make it work for his life not hers. As long as his bloods are stable I can't see it matters. If anyone knows a good reason why he should do it, please tell me and I'll try and make sure it happens

Bike wise he goes with a friend an has lucozade with him and biscuits. We've just bought him a mobile phone with a carb app on it.

Thank you for all your support. 🙂

 

[Sally71]

I think the bolus wizard in the meter is only to make it easier for you by doing all the calculations for you, if your son can do it all in his head I don't think it matters if he doesn't use the meter that way. As long as he's testing regularly enough that's the important bit.

 

[ladybird777]

Thanks Sally. DSN has phoned and says he needs to put it all in for their data they will download every month at clinic. DS is annoyed and initially refused but is doing it grudgingly now. I know the monitor is expensive but I don't like it and more importantly neither does he. He's dyslexic and it has no ability to delete data if he makes a mistake and there is no way to note that on the system. It also doesn't correct properly. I thought it was us using it wrongly but I see from threads on here others have the same problem. He'd prefer something more bog standard. 😛 I hope he gets used to it or I can see us falling foul of the DSN next time we see her.

 

[Pumper_Sue]

Hi Ladybird,
Tell your son to do his best to comply with what is being asked. I may be a bit off target here so don't get your hopes up to high. It's just a thought that if he complies and shows he can and will use the gadgets properly he will be given a pump.
Do point out your son's problems regarding dyslexia it's the HCP's job to help and encourage.

 

[ladybird777]

You maybe right. A pump has already been suggested if he does as he's told now. He's now doing everything to the letter 🙂 They know about his dyslexia.