please reassure me diabetes type 1

[poppy20]

Hi

Thanks to everyobody who replied to my message a couple of weeks ago. My son was diagnosed with type 1 diabetes 4 weeks ago, completely out of the blue. The shock was terrible, no diabetes in the family and he had been really healthy.

I have been slowly educating myself so I can support him. He is 20 and at uni.

So fed up and upset tonight as I came across an article in the Telegraph that just focused on all the complications and shortened life span. I want to be realistic to get the best care for my son but this type of article puts me back to square one.

How do other parents cope with this...perhaps it gets easier with time

Thank you xxx

Type 1 diabetics certainly can suffer with complications as they get older, but the risk is vastly minimised if the blood sugar levels are well controlled. Its very important that he realises this as teenagers and 20 somethings can get very blase about it an not monitor their BMs correctly and go stupid with diet etc - think they rebel - so hope your son is of the sensible type!
There are constant improvements in insulin administration and sugar level checking, even a possible pancreas cell transplant (to create insulin naturally) in the future.
Its the sugar levels going too high for too long which cause complications, so its all management.
Poor both of you, its not nice to deal with it but you'd be surprised how it just becomes a part of your life. My 12 yo niece developed it, but its not stopped her doing what she wants!

Hi Poppy, hope you and your son are coping OK. Type I diabetes does not run in families as such, nor does how healthy you are have anything to do with it whatsoever - it's an autoimmune condition no more related to diet and lifestyle than, say, MS or cancer so don't either of you beat yourselves up on that score

Yes, it's possible to suffer complications, but it's by no means inevitable. The most important thing is to get your DS into the habit of checking his blood sugar levels regularly. He's bound to have times when he can't be bothered, but the more he checks the easier it is allow for that extra pint, or a bit of junk food.

Can't speak as a parent but hope i can give u some reassurance..

I've had type 1 diabetes for 27 years now..have only recently developed some minor damage in one eye but that happened during my 2nd pregnancy!

Other than that absolutely nothing..i lead a completely normal life and have never missed out on anything..am v vigilent about checking my blood sugar..do it about 10 times a day i guess..that is extreme but i suffer from hypo unawareness which means i can have a hypo with v little warning..but that is the only problem i have

The problems only set in after sustained periods of poor control leading to high blood sugar levels...by sustained i'm talking years

Anything i can do to help ask away..i don't know how it feels to be a parent i guess, but i know how ur son is feeling

Thanks so much.

paddyclamp can I ask you did you always test that much?
My DS only tests about 3 times a day but he is only a month into it, I don't want to put too much pressure on him. It hurts him quite a bit to test so he doesn't like it!

I am quite frightened of the hypos, he said he can feel it in his body when he is a bit low so he has a glucose tablet...he seems to be coping well. I am worst.... as his mum...worry a lot!

Thanks for your help xx

Hi Poppy,

I can't speak as a parent, but my DH developed it around age 20 (while at Uni, like your DS, he is now in his 40s) so I know what it's like to live with it (although I wasn't around when he developed it). Good control is key, my DH has never suffered any complications, he gets very good care from the local GP surgery and hospital, with lots of checks on all sorts of things. He lives a totally normal life, does sports, drives etc.

It might be worth contacting or joining Diabetes UK, they have lots of helpful information. TBH, the only problems we have had are with things like life assurance, travel insurance, driving licence (must inform DVLA). The treatments are improving all the time, which I find very encouraging too. Hope this helps.

Hi MrsDinky

Thank you so much for replying to me. Very reassuring

Hope you don't mind me asking you if your DH injects on a flexible regime or has he considered a pump. Joel has already been offered one by the hospital but it's a big step being attached 24 hours a day. We are going to try the multiple injections first to get more flexibility with eating.

Thank you so much...thought life insurance etc might be interesting!!

Thank you again xx

Hi Poppy

I only test that often because i have hypo unawareness..before that i probably only checked about 4 times a day and that way fine..i know that 10 times a day is very extreme!!..i dont even feel it when i test any more, your fingers adapt!

I have thought about the pump too but for now i am happy on multiple daily injections as that gives me all the freedom i need...i don't fanbcy being attatched to something 24 hours either..but i do know others rave about them!

Hi Poppy,

DH injects flexibly depending on what he is doing and what he has eaten, he has been doing this for years (long before it was recommended TBH) but I guess you fairly quickly learn which foods require which amount of insulin. Don't think a pump has ever been mentioned to be honest, he manages fine with the injections. He also only tests 2 or 3 x a day but he has been diabetic for 20 years so knows his own needs pretty well, and is aware when a hypo starts.

I'm sure DS will have been told this but it is so important to make sure he always access to some sugary stuff in case a hypo starts, it is not funny if you are for example on a country walk or in a traffic jam without any.

Other factors affect blood sugar levels apart from food too, mainly exercise, but sometimes heat, if it is very hot like it is supposed to be tonight DH will probably have a bit less insulin before bedtime.

I think you and DS will probably find a very steep learning curve over the coming months, but it won't be long till it is just part of his way of life. I would say never hesitate to contact a Dr or diabetes nurse if you are worried about anything, this goes for anything that may seem unrelated too, things can be more serious once you are diabetic than they were before (stomach upsets etc can mess your blood sugar levels up for example).

Good luck with it all, he is lucky to have a supportive mum!

Thank you so much - it is a steep learning curve...didn't know a thing about diabetes, but getting there...slowly xx

Hi Poppy,

I was diagnosed with Type 1 just 6 years ago, at the age of 26. It was a complete shock initially but I was also relieved that while I may have a chronic condition, it is manageable. Can I suggest that if it is available in your area you find out about the DAFNE (Dose Adjustment for Normal Eating) system of diabetes control for your son. It is a system of Type 1 control that allows complete freedom of eating and blood sugar management (as I sit here eating a packet of Revels ). I initially wanted to do it because I wanted excellent blood glucose control before I got pregnant. I stayed on the regime throughout pregnancy and maintained HbA1C levels of lower than 6%. (HbA1C is a blood sugar measurement average of the past 3 months, so it indicates longer term control). With this type of blood control it is just about as close to someone without diabetes as it is possible to easily maintain. My point being, with control as good as this there is no reason to worry about long term complications for your son. Hope that helps but if it is confusing then feel free to ask me anything.

I don?t think they do DAFNE for children, but there?s no reason why you can?t do carb counting for yourself. Just buy a copy of Calorie King or the Collins Gem Calorie Counter and away you go.

Poppy, the most important thing to bear in mind is there?s no such thing as typical T1 ? mine and my 2 DC?s often react in completely different ways and testing often is the best way to find out which foods cause your DS the biggest problems.

My 2 both use pumps now after several years of MDI (multiple daily injections), and seem to prefer them, but I think the multiple injections route is the best way to go at first.

Mattellie - the OP's son is 20 so I don't think there would be any issue with DAFNE training.