19, newly diagnosed, and sassy

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Frustrated Artist

Frustrated Artist

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Hello everyone! Bit nervous about all this but here goes : my 19 year old daughter was diagnosed 6 days ago with Type 1. Her blood sugar was 22 and she had max ketones. The other funny reading thing was 148. Big big shock to us all. I have been reading, crying, worrying, crying, unable to eat, crying ... She however appears to have taken it all on the chin. I know it's not one of those things you can just snap into, it seems it takes a year before you even get used to everything? My daughter is one of those teenagers who has done rebellion well and enjoys clubbing, binge drinking, junk food, untidy bedrooms, parties, sullen communications etc. She is cross with me when I cry and very reluctant to talk. Not an ideal starting point. One of the first things the Expert Nurse said to her was, "you can still go clubbing" - my daughter took her at her word and has been at a festival for 2 days. However she is sleeping at home and going with 2 very good friends who have been brilliant at texting me and reminding her what to do. Not that we really know! I can't physically stop her from doing these things, and I know it's very early days but I'm desperately worried that she will be doing permanent damage to herself. She's missed breakfast (and insulin) due to hangovers and announced that she is going to a party tonight. On top of that she has A level retakes next week and beyond : I am not putting any pressure on about that, exams have suddenly lost their meaning. She wants to go to University in October. Any advice would be gratefully received.
P.S. We do know one person with Type 1, who is kindly coming over tomorrow to talk to us but she is a more mature girl who has had it since early childhood so her behaviour was probably never so bad. We have a hospital appointment on Wednesday to see how we got on, she doesn't want me to come in in case I cry. My husband has said he will go with her, we have 10,000 questions.
 
Welcome, someone with experience in Type 1 will be along soon.
 
Frustrated Artist said:
Hello everyone! Bit nervous about all this but here goes : my 19 year old daughter was diagnosed 6 days ago with Type 1. Her blood sugar was 22 and she had max ketones. The other funny reading thing was 148. Big big shock to us all. I have been reading, crying, worrying, crying, unable to eat, crying ... She however appears to have taken it all on the chin. I know it's not one of those things you can just snap into, it seems it takes a year before you even get used to everything? My daughter is one of those teenagers who has done rebellion well and enjoys clubbing, binge drinking, junk food, untidy bedrooms, parties, sullen communications etc. She is cross with me when I cry and very reluctant to talk. Not an ideal starting point. One of the first things the Expert Nurse said to her was, "you can still go clubbing" - my daughter took her at her word and has been at a festival for 2 days. However she is sleeping at home and going with 2 very good friends who have been brilliant at texting me and reminding her what to do. Not that we really know! I can't physically stop her from doing these things, and I know it's very early days but I'm desperately worried that she will be doing permanent damage to herself. She's missed breakfast (and insulin) due to hangovers and announced that she is going to a party tonight. On top of that she has A level retakes next week and beyond : I am not putting any pressure on about that, exams have suddenly lost their meaning. She wants to go to University in October. Any advice would be gratefully received.
P.S. We do know one person with Type 1, who is kindly coming over tomorrow to talk to us but she is a more mature girl who has had it since early childhood so her behaviour was probably never so bad. We have a hospital appointment on Wednesday to see how we got on, she doesn't want me to come in in case I cry. My husband has said he will go with her, we have 10,000 questions.
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Hi Frustrated Artist, welcome to the forum 🙂 Very sorry to hear about your daughter's diagnosis :( There's never a good time to get diagnosed, but hers is a particularly difficult one as she has lived her childhood not having to think about such things, and now, as she starts to make her way in the wrld as an adult she suddenly has this big things to try and factor in to her plans. Actually, planning is what it is all about - with the right amount of forethought there's no reason why diabetes should stop her from doing anything she wanted to do before. Planning in the early stages means always making sure you have something to hand in case of a low blood sugar, and always carrying your kit around with you so you can test if necessary when out and about 🙂 Oh, and trying to keep things in moderation whilst she determines how she reacts to various meals and situations.

What insulin is she on? I would highly recommend getting a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas, which is by far and away the best book available on Type 1 (whatever your age!) 🙂 Just browsing it will give you (and her) a good insight into all the considerations, and the options for dealing will all common problems and frustrations you might encounter. There is a big learning curve with diabetes, particularly when you have Type 1 and you immediately have insulin to consider, but learning some good daily habits, like regular testing and making sure you inject when needed, can make things much easier in the long run. With experience, you gradually learn more, but hopefully she is getting good support from her healthcare team in these early days so that all her questions are being answered.

For you, I would suggest having a read of Adrienne's essential guide for parents of newly-diagnosed children which may help how you are feeling about it all. You might also like to discuss the 'Diabetes Etiquette Card' with your daughter, so you can get some common understanding and reduce any conflict.

Please feel free to ask any questions you may have, there is lots of knowledge and experience among the members here, so we can probably answer whatever might be confusing or worrying you! 🙂
 
Welcome to the forum, Frustrated Artisit. It would be even better if your daughter joined here. I hope she gets the chance to ask questions of the person with diabetes tomorrow. I strongly recommend that she has a chance to have some time with the person with no parent present, in addition to allowing her dad to aks the person some questions. I don't think I'd want to ask anyone about eg contraception, pregnancy, relationships with my Dad present, when I was 19 and still not now!
She's done exactly the right thing by spending the last 2 days at a festival! Why waste the tickets bought before diagnosis? Although I was diagnosed at age 30 years, soon after completing my BSc Marine Biology (as a mature student), I did a MSc a couple of years later. I've just spent 2 weekends in a row camping in Lake District, once working on a challenge walk and second voluteering on Keswick Mountain Festival trail runs. Music isn't really my thing, but I have been to a few folk festivals, when I lived very near (within earshot!) of Cherry Hinton Park, Cambridge for many years.
Priority has to be exams, so I hope you have / she has notified her college/ exam board regarding her retakes. What area of study is she considering? Which university? It's possible there is a member who has experience of the type of course / university / city.
 
Thank you Northernet and Copepod for those very helpful replies. My iPhone did not alert me to them (even though I thought I'd asked it to) so I was feeling very alone - relieved to log in this morning and find I'm not.
Yesterday she spent the day with a friend and then to another's for a sleepover. I feel a little reassured as she did text last night and say her reading was 5.8 (best yet) and that she'd had a good day. Before she left she told us "stop looking at me like I'm dying!" so I'm reading loads (got the book you recommended), talking about it loads, and coming up with images to help me understand it. The latest one is its like watching our cat run repeatedly across a busy road. My daughter will have to learn to walk down to the crossing and wait to cross - ie she will get there but it will take more time and thought than a non-diabetic.
She has tried to revise but is always on her phone, she admitted she couldn't concentrate. I have told the exam board. She is dyslexic so was on extra time anyway but I gather they are allowed to take food in? And perhaps more lenient marking? She's hoping to go to Exeter to do some sort of Business Studies course. I noticed Exeter hospital runs DAPHNE courses so perhaps their diabetes centre is a good one.
Again thank you, you have made a big difference to me, and I'm sure to everyone. Being a moderator on a site like this may well suit my daughter one day, she loves people and now has this extra insight.
 
Exeter Diabetes centre has an excellent reputation, I believe 🙂 She may need to check her blood levels and eat something if low during the exam - I'm far too old to know how it all works in practice so hopefully the school/college can fill you in with the details. Good analogy with the cat - but crossing does become easier when you are more familiar with the 'road' and better able to assess risk 🙂

She's most welcome to join! Having Type 1, which is quite rare in the population, can be a bit isolating, but here you have instant access to lots of friendly, knowledgeable people, some of whom have managed very well since the 1960s! 😱
 
Usually, there is provision for the "clock to stop" if she needs to test blood and / or eat / drink if hypoglycaemic during an exam. So, she would have to be in a small room, so she doesn't disturb other students. I am currently doing my annual stint as a university exam invigilator, and have done a few "special circumstances" sessions, including some students with type 1 diabetes, and a few of those have taken their allocated time to test blood glucose. Others have worked straight through, taking no extra time.
You'll have to ask education / exam experts about how marking is affected by medical conditions. However, she still needs to do her very best work in exams. Presumably she already had some marks effectively "banked" before diagnosis?
She's quite right, being looked at like she's going to drop dead any minute isn't very helpful. She needs to keep doing the things that make her life worth living. I don't think there are any adults who didn't do some daft things as teenagers.
 
Copepod said:
She's quite right, being looked at like she's going to drop dead any minute isn't very helpful.
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It may be unhelpful but as a parent whose child is 'broken' with no way of the parent being able to fix it makes it very difficult not to do it 😉

Oh yeah! Hi and welcome to the forum. As a type 2 and not in the parent category I am afraid I am of no help at all!
 
I know it's natural for a parent of a newly dignosed child to be worried, but I know that my Mum's reaction when I was diagnosed aged 30 years, and had to live with them for a year, as I'd just returned from a year working overseas, made things so much harder for me. My Dad, on the other hand, involved me in things we both enjoyed doing eg walking along canal towpaths. I had the extra problem that no friends lived within 100 miles, and as this was mid 1990s, no mobile phone and no email made private communications with friends very limited.
 
Hello and welcome Frustrated Artist,
I was in the same situation your daughter was in 20 yrs ago 🙂

I was also diagnosed aged 19. I had just started uni, I continued to party, went to festivals, ate junk food etc but tried to plan things a bit more and always made sure I had hypo treatment etc on me. I didn't want *anyone* to see me as being different, or to be treated differently- I was still the same person.

Your daughter is dealing with a massive change - allow her the time and space to deal with it. I'm sure she will come around.

I'm now 39 married, have done a bit of travelling, completed my Msc, have a happy and healthy 2 year old and I'm 26 weeks pregnant.
Everything will fall into place x
 
Ah Cleo, good news! I think my daughter wants to do as you did and just make it not a big deal. I admit I am a worrier. I have been listening to podcasts from USA about the subject and today's was about a type 1 student who died at university because he had flu and got complications. Not the sort of thing one wants to hear! Much better to hear about people who prove it can be done and life does go on. Congratulations on the pregnancy - how often do you have to be checked when you're pregnant?
 
Frustrated Artist said:
- how often do you have to be checked when you're pregnant?
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Approximately every 5 minutes LOL Seriously - one helluva lot more frequently than a non-D gets checked. D's also get many more scans rather than the two ordinary folk are limited to. Currently Maternity services for Ds are pretty brill.

Fantastic when you consider that 'live' births to diabetic mothers were exceptionally rare before the 1950's. If my mother had been me - it's doubtful whether either me or my sister would have ever existed. Even if she had managed to survive the two WWs she did, anyway.

Insulin treatment for T1s was only introduced first in 1923 - not even 100 yet. Good ole Banting, Best & McLeod. (and their poor doggies)

Scary - innit?
 
I think its completely natural for you to worry - you're a parent after all ! but i think statistically the likelihood of a type 1 developing complications from the flu and dying are very slim, so always good to try to put these things in perspective 🙂

Re pregnancy - pretty much what TrophyWench said - every 5 mins !. The ante natal care offered to diabetic women and type 1s in particular is outstanding. Once you let your consultant know that you'd like to start trying for a baby they make you go through pre pregnancy planning (so this is still when you / your partner are using contraception). I was seen every 8 weeks and receiving support from the dietician and they checked my Hba1C, my eyes, blood pressure and kidney function to make sure all was ok. When they were happy with my levels in the sense that they had seen a good (below 7%) hba1c for a good few months they put me on the high dose of folic acid (very important for us!) and gave us the green light to go off the contraception.

As soon you get pregnant they see you every 2 weeks at the ante natal clinic - at these visits the nurse takes your blood pressure and checks your urine, then you're seen jointly by the endocrinologist and obstetrician, and then there's a diabetes specialist nurse (DSN) and a dietician who you can go and chat to as well. The nurses and dietician are also available on the phone / email if you ever need help with anything.

We get scans at 12, 20, 28, 32 and 36 weeks, and extra scans IF needed. The 20 week anomaly scan is done at the Fetal Medicine Unit and performed by a specialist in fetal medicine, so not where the low risk women go. They also check our eyes throughout the pregnancy to make sure they are not being adversely affected, and they do a 6 week check post partum as well.

The protocol for labour / delivery varies slightly from trust to trust but as a general rule they won't let us go past 39 weeks. My hosp is 38 weeks and then they induce. Unfortunately for me the induction failed so I ended up with an emergency c section but all was fine in the end. I breast fed my son for a 1 yr and hoping to do the same this time around. and breast feeding lowers your blood sugars so you can eat plenty of cake 🙂

it probably all sounds like quite a lot but honestly I can't fault the system - i consider myself so lucky to have access to these services, my son is fine and has been unaffected by my diabetes so its def not doom and gloom any more !
xxxx
 
When your daughter takes her exams, as others have said she is entitled to rest breaks. My advice would be to make sure that if she has a hypo, she should take all the time that she needs before returning to the exam. For driving we are required to wait 45 min after a hypo, for good reasons. So perhaps expect to take time if needed after a hypo.

It is great that your daughter has taken things in her stride, and yes there is a lot to learn. She might like to look at the videos produced by student with Tupe 1. They are available on DUK website and are called Type1 Uncut. They still make me chuckle when I watch them.
 
Thank you all again, more normalising comments. I notice people mention hypos a lot but she hasn't had one. Her sugar level was at 22 on diagnosis and after a week the nurses took her monitor and attached it to their computer and this amazing graph was displayed, showing probably an average of 10. So they increased her lantus from 12 to 14. The following day all readings were around 5. Yesterday they were back up (9 and 11 were the ones I saw). She doesn't want me constantly asking, but does this mean her diabetes is being hard to control? Or is she doing something wrong? Does it take ages to get down to where you should be? Does anyone know how fast the high levels cause the damage? She seems so laid back about it and I imagine she might think, "well I'm avoiding hypos and it's much lower than it used to be". The nurses didn't 'tell her off' at all but I sensed a level of concern from them. Such a very difficult balancing act, whichever way you look at it! She wants to get a CGM (look at me with the lingo ) which sounds like a good idea.
 
Hello Frustrated Artist, just read through this. I echo the comments of the others in that it sounds like your daughter has the right attitude (as a parent you might not think so 😉) towards her diabetes in trying to fit it into her life. In terms of control it's early days yet and can takes weeks or months for things to settle down but it sounds like it is going okay so far.

I was 18 when diagnosed and in the sixth form and then went through University, went to Glastonbury several times, other music festivals, inter railing around Europe - for me it is about trying to live a normal life, obviously with some adjustments. I'm a parent myself now to two daughters 17 and 12 (not diabetic) so I understand your concerns and I imagine my Mum was the same when I was your daughters age.

In terms of CGM's the Freestyle Libre is the best bet (not a true CGM but close enough). Loads of threads on here about them. Not everyone has got on with them but when I have used it I have found it very useful indeed.
 
The reason for gradually reducing blood glucose levels, instead of dropping fast, is that if your body has got used to higher levels, then any levles lower than those high levels will feel hypoglycaemic, but will be false hypoglycaemia. It's only a few days of high levels, and it's better to get used to normal levels again gradually.
Please trust your daughter and here diabetes specialist nurse team to find the best way for her to manage her condition. I know that my Mum over reacting when I was diagnosed aged 30 years made an already very frustrating and difficult situation much worse. Plus DSN was useless - she didn't understand what I meant when I asked about fell walking and she talked about her very modest rambling, which wasn't what I meant, and in 1996, there was virtually no internet and I didn't have access.
 
On BG readings and your daughter not wanting to share them, I can understand that. I am usually happy to show my meter to my husband when it is green (on target) and he is well adapted to responding appropriately with due praise, but I don't show anyone else my reading sand get quite annoyed if other people apart from very good friends who understand the values, think it is okay to ask what my reading is.

Things will take time to settle and it sounds as if your daughter is doing very well adapting. Long term conditions are what they say they are, and the higher readings soon after diagnosis are not going to be a worry.
 
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