Advice please.

[sadsocks]

My daughter who's 18 was diagnosed as Type 1 4 months ago and at first all was well and her bloods were always pretty much in range. She was motivated to eat well and monitor regularly and record in her diary.
The last couple of weeks things have changed and her sugars have been elevated and a little more erratic. I am constantly encouraging her to give correcting doses and check regularly, but she's gone a little 'off plan' and seems to think that it's ok to run a little high and not eat sensibly. I think that the 'honeymoon' period may be over in terms of the actual diabetes and her interest in looking after herself.
I'm trying to encourage independence but getting worried when she isn't as on top of things as I think she should be. Trying hard not to be too pushy, but it's hard when your child's health is at risk.
I know she's having trouble coming to terms with this, but not sure how to be supportive without seeming controlling.

 

[azure]

It must be a very difficult balance @sadsocks All I can suggest is being positive (even if you don't feel positive!) so frame any comments in an encouraging, praising way.

You're right to be wary of 'nagging', but it must be very hard to step back. Could she join here? Does she know any other Type 1s?

Is she carb counting and adjusting her insulin? That should give her flexibility and better control.

Edited to add that getting your head round a Type 1 diagnosis is hard, and often the reality of it takes a while to sink in. So some of her lack of interest in control may be a reaction to the realisation that it's not going to go away.

 

[sadsocks]

Hi, she is carb counting and adjusting, but I think is getting disheartened when it still isn't giving her the readings she was getting before. She doesn't want to be diabetic, so currently doesn't seem to have the desire to make it her priority... which I can sympathise with. Still doesn't make it any easier though.
I try to be positive, but dealing with teenage girls can be difficult at the best of times. She has a check up in a week or 2, so hope that that may get her 'rebooted'
At this point I think that she would not even consider joining this forum, which is a shame.. she knows other type 1s, but I don't think she would want to talk about it with them. She is carrying on with her life exactly as she did pre diagnosis which is what she should be doing , but Id just like her to give a little more thought to her health.

 

[azure]

Hopefully her DSN will explain more about the honeymoon ending and how it affects sugars. It's not her fault, and she's not failing. That sounds obvious, but it's worth saying.

I don't know if she has anyone she can talk to about the exhausting nature of Type 1 or if she would want to, but perhaps just say you're ready to listen whenever she wants to moan.

I usually recommend the book Think Like A Pancreas to help with control, but it's also written in a really friendly way, and when I first read it, I did feel better because the author uses a bit of humour and that made me feel like someone else understood - but an anonymous person who wasn't going to nag or fuss, if that makes sense?

She can improve her control by checking her basal dose is still right, and by advance bolusing to reduce spikes (bolusing more in advance of eating). Perhaps some better numbers might encourage her a little?

Her mealtime ratios may also need adjusting now.

I don't think there's any quick or easy answer, and I do sympathise hugely.

 

[ME_Valentijn]

You can't make her take care of herself, but it might help to thoroughly educate her regarding the likely long-term complications of poorly controlled diabetes. Maybe she doesn't want to have to deal with diabetes, but she'd like losing a limb or her eyesight even less. It's possible no one's really educated her about the consequences - maybe due to her age, or not wanting to overwhelm or scare a new patient. But as an adult, she needs to be spoken to frankly as an adult.

 

[sadsocks]

Thanks so much... I am working through "Think Lije A Pancreas" and have suggested to her dietician about advance bolusing and she told me that it wasn't a good idea as my daughter uses Humulog. I shall keep on trying to be as supportive as I can..I have told her that she's doing everything right and that maybe things just need adjusting. I find this forum s big help

 

[sadsocks]

Thanks @ME_Valenjijn, I have spoken to her about long term complications, but I think bringing this up all the time will not contribute to her acceptance. I try and focus on the positives of keeping well by keeping her sugars low.

 

[fletchweb]

My daughter who's 18 was diagnosed as Type 1 4 months ago and at first all was well and her bloods were always pretty much in range. She was motivated to eat well and monitor regularly and record in her diary.
The last couple of weeks things have changed and her sugars have been elevated and a little more erratic. I am constantly encouraging her to give correcting doses and check regularly, but she's gone a little 'off plan' and seems to think that it's ok to run a little high and not eat sensibly. I think that the 'honeymoon' period may be over in terms of the actual diabetes and her interest in looking after herself.
I'm trying to encourage independence but getting worried when she isn't as on top of things as I think she should be. Trying hard not to be too pushy, but it's hard when your child's health is at risk.
I know she's having trouble coming to terms with this, but not sure how to be supportive without seeming controlling.

I don't know what it's like to be a parent of a diabetic and hopefully I never will have that experience but I do know what it's like to be young and have diabetes having been diagnosed when I was 4. When I was 18 I didn't take any precautions, partied with the rest of them - drank foolish amounts of alcohol etc .... I was that way right up until my late 20s and then for some reason I started living a little bit more responsibly (falling in love may have had something to do with it).
I can't really say if I would have been better off having tight control (it's debatable whether I have tight control now with A1Cs usually in the mid 7s) - for me I don't think it has made a difference. I'm 55 now - no complications, excellent health, physically fit and living a wonderful life. I guess that doesn't happen to everyone but it does happen.
So coming from that perspective I would suggest just trying to be supportive and try not to lay guilt trips on your kid - not that you are - but many parents tend to do that with their children when they lose control ...
Finding a peer group for her may be the answer, as well no one changes from flawed to perfection in a short amount of time, it often takes years.
I really don't know how my parents coped with me

 

[sadsocks]

Thanks so much for that... the difficulty is that you never know where each persons path will take them.... I hope that my daughter is as fortunate as you have been.
We chatted this evening and she really is doing her best, although she told me that she struggles every day with the prospect of living with this for the rest of her life. I stressed the possibility that a 'cure' or at least a better solution to management may well be a reality in the following decades and that must be a reason to strive for good control now. She's gone out to the pub with her friends tonight...and is staying out overnight. I try not to worry... she won't have a heavy night, and she knows where I am.

 

[sadsocks]

Thanks @mahola, I honestly think that if there is a bad time to be diagnosed, then this age is probably it. As a child, you have complete faith in your parents and grow up eventually knowing diabetes as a way of life, and as an adult, you have the life experience and maturity to know that you have to try and do your best to stay in control. My daughter was just finding her independence and freedom and now feels trapped and most likely scared for her future. She is smart and fabulous, and I'm sure that she will master this in time. I do find it hard every day, and wish I could take this away for her... but, I know that she will take control as soon as she can. I keep telling her that she is doing nothing wrong and she is doing great. I've really appreciated the responses to my post. Thanks again

 

[azure]

Thanks so much... I am working through "Think Lije A Pancreas" and have suggested to her dietician about advance bolusing and she told me that it wasn't a good idea as my daughter uses Humulog. I shall keep on trying to be as supportive as I can..I have told her that she's doing everything right and that maybe things just need adjusting. I find this forum s big help

On Humalog, I had to bolus 30 mins in advance of my breakfast ( my most insulin resistant time). I moved my bolus gradually and carefully. For other meals I found 10-15 mins enough.

 

[Scott-C]

Thanks @mahola, I honestly think that if there is a bad time to be diagnosed, then this age is probably it. As a child, you have complete faith in your parents and grow up eventually knowing diabetes as a way of life, and as an adult, you have the life experience and maturity to know that you have to try and do your best to stay in control. My daughter was just finding her independence and freedom and now feels trapped and most likely scared for her future. She is smart and fabulous, and I'm sure that she will master this in time. I do find it hard every day, and wish I could take this away for her... but, I know that she will take control as soon as she can. I keep telling her that she is doing nothing wrong and she is doing great. I've really appreciated the responses to my post. Thanks again

There was a 19 yr old on the DAFNE course I was on last year, and she initially seemed very casual about her sugars, running about 15 most of the time. However, as the week went on, she opened up a bit and told us all she was basically terrified of hypos and preferred to run high to avoid them. Maybe there's an element of that with your daughter? Has she had bad hypos?

Next time we all met up, she'd got herself a libre and it was making a big difference for her, being able to see hypos coming and then stopping them before they happen.

Although I think the plain fact is that if you give a teen another app to play with on their phone, it's going to spark a bit of interest!

 

[endocrinegremlin]

I think the best you can do is observe from afar at the moment. She is an adult and as long as she is taking her insulin and testing that is the main thing. On the forum are the ones who really take care and watch all their results but many are not so strict. There is a balance to be found. Emotionally she will be going through a roller coaster right now. Some people like having gadgets and gizmos to monitor things and some like to have the minimum while in control so as to feel more 'normal'. (even though many would argue their tools allow them to function more normally. we're all different) No age is easy to get diagnosed at but this is a pretty hard one. No parent can ever really comprehend the number of thoughts that rush through a diabetic's head each day. It does not surprise me at all that she has taken her foot off a bit after 4 months. Most people do. Or their parents do. This disease is so intense! A few months to adjust to all the changes in her life while perhaps not monitoring as closely is not likely to do long term harm but being pushed too hard too fast can create resentment and cause people to go right off the rails. I don't think scare stories are going to help at this point. In this day and age many are aware of what diabetes can do to a person. Reminders tend to prevent people from taking control not encourage them to do so. Be there. Ask how she is doing. Offer her friendly choices when you are around. But remember, food is food and many exist fine on **** too. Just like regular people. As long as the insulin is right then that is the main thing. She has to learn how to cope with all things. X

 

[sadsocks]

We are seeing the consultant today, and I've told her that she's doing great and that things probably need tweaking a bit.. downloaded the info from her monitor and her average has been 9.2 over 90 days, but until end of Jan she was more than often in the good zone... tried to show her this last night, but wasn't really interested... I'm sure this will come in time. She does have hypos, but not with any great problems and seems to cope with them well. Would love her to try the Libre, but at this stage I think she just wants as little reminding her that she has diabetes as she can. I'm sure she will find her way...,I do tend to worry... thanks for all of your responses x

 

[sadsocks]

Just a quick update... her HbA1c was 52!... she says she'd like it lower next time!!

 

[Scott-C]

Just a quick update... her HbA1c was 52!... she says she'd like it lower next time!!

That's great - definitely in the green zone on this chart!

W

 

[Cotcha]

Great work on the Hb!

I just wanted to throw my hat in here. With a Type 1 son edging ever closer to you daughter's age, I feel your pain and concern. That balance between trying to control the world around our children and allowing them the freedom to make their own choices is a narrow rope to walk. I find myself falling off all the time. For me, and I should say that I feel that I am far too controlling, I would say that your daughter needs to find her own way. From what you have said, you seem confident that she will. Diabetes is a everpresent, overwhelming, insidious illness which is exhausting in its constant presence. I fully understand your daughter's need to put it on the backburner for awhile. But this must be torture for you. From the recent Hb there must be some comfort there for you. I hope you can take it. You and your daughter appear to be doing an excellent job. Time will tell and from what you have said, I am sure your daughter will do great!

 

[sadsocks]

Great work on the Hb!

I just wanted to throw my hat in here. With a Type 1 son edging ever closer to you daughter's age, I feel your pain and concern. That balance between trying to control the world around our children and allowing them the freedom to make their own choices is a narrow rope to walk. I find myself falling off all the time. For me, and I should say that I feel that I am far too controlling, I would say that your daughter needs to find her own way. From what you have said, you seem confident that she will. Diabetes is a everpresent, overwhelming, insidious illness which is exhausting in its constant presence. I fully understand your daughter's need to put it on the backburner for awhile. But this must be torture for you. From the recent Hb there must be some comfort there for you. I hope you can take it. You and your daughter appear to be doing an excellent job. Time will tell and from what you have said, I am sure your daughter will do great!

Thanks for that... it really is a balancing act! It's having the faith to let go... whilst all the time wanting to hold on!!!
My daughter is a confident, amazing person, and this has understandably rather thrown her. Having the good HbA1c result has given her a boost Im sure, and she will learn from her mistakes with this as we all do in life.
It is a constant struggle and I know it is a terrible thing to live with, but I hope that a positive approach, and our continued support will help her through this tricky time.

 

[barney70]

hi so sorry to hear about your daughter,i my self have a 17 year old daughter with type 1 she was diagnosed 2 years ago.We found the first 6 months to be the hardest making sure she carb counted properly and corrected properly if needed,i think the best recipie is to incourage and dont judge or panic too much if she is high and i am sure in time she will deal with it better,but i can understand your worry.All we can do as parents is hope they carry on the routine when they are away from you,i arm her to the teeth with stuff when she goes out incase she gets low,make sure she has a power bank for her mobile and make sure she wears her diabetic necklace and stays in touch

 

[sadsocks]

Thanks barney70, you seem to have perfectly summed up what we are trying to do
She gets disheartened when her readings are high, but we just keep encouraging her to keep persevering, and think of the bigger picture ..