Newly diagnosed Type1 at 16

Status
Not open for further replies.
P

Properbrew

New Member
Relationship to Diabetes
Parent
Pronouns
She/Her
Hi,

apologies in advance if this all is a bit muddled but I’m feeling quite muddled myself.

My daughter was diagnosed type1 about 3 weeks ago. We’ve got no history of Diabetes either side so it’s come as a huge shock and she has been/is so poorly with it it was touch and go for the first week and her blood sugars are still running in the high teens / low twenties at home.

As you can imagine it’s all been pretty horrific but we’ve finally got her home and are trying to navigate her diagnosis.

I’m so proud of how resilient and brave my daughter has been but (completely understandably) she is not coping well at all.

She's always been terrified of needles so her being in DKA and so poorly was incredibly traumatic for her and facing injecting multiple times a day at home is just too much for her to handle at the moment.

Because she’s 16 we’ve been placed under the adults service although they are liaising with the peads team we’re just in this horrible situation where we can’t really access the care and support she needs. She’s still in school and about to embark on her GCSE’s but can’t manage full days at the moment.

The consultant has referred her urgently to CAMHS but they won’t rush the referral unless she’s actively seeking to harm herself. We’ve tried to argue her not taking the insulin is akin to the same thing with little luck so far.

I’m so lost on where to go and what to do to help her and keep her well. I don’t really suppose there’s much anyone can do but I find myself also struggling and feeling overwhelmed by this gap in care. She’s looking to me to make things better (as any child does) and I’m lost.

If you got through this any words of wisdom or guidance would be appreciated x
 
I have been a Type 1 diabetic for 57 years and I am probably fitter than most of my contemporaries. It's a tough and strange condition but manageable. It can be lived with, managed and, actually, all ok! Hope all goes well.
 
Gosh. I really felt for you as I was reading your post. It sounds like a really hard situation. I hope she is getting good and prompt support from her diabetes team even if the CAMHS support is delayed.
How is she coping with the injections now? What kind of monitoring is she doing? Libre? Or something else.
I'm not a parent at all never mind a parent of someone with diabetes but I'm sure lots of parents will be forthcoming with advice and support.
Remember there are no stupid questions and a lot of wisdom to draw on in this forum even outside the parental section.
Plus the books that everyone always recommends that I can't remember the titles of right now...
 
Welcome @Properbrew Sorry to hear about your daughter’s diagnosis. I know it seems unimaginable now but it does get easier. The first weeks and months are very stressful and can be overwhelming.

I have a needle phobia and have had Type 1 for 30 years. I’ve had an insulin pump for 20 of those years. I think the pump helps (you just change the cannula every 3 days, no injections) but the only way I cope is ‘thinking past’ the injection when I use an injection pen, which I do sometimes. It’s hard to describe but I go to a calm place by following a little routine preparing the pen, then when I insert the needle I think past what I’m doing. I often think about food or TV or whatever. I can still feel the tension but it’s held at bay and only very rarely does it break through.

There are teens here like @Lily123 Perhaps your daughter would find talking to other Type 1s of a similar age useful.

An important thing to stress to her is that it’s not her fault she got Type 1. Most people diagnosed with it, do not have a family history of it - something like 9 out of 10 people have no close relative with it. It’s just bad luck and nothing she did or didn’t do. It’s also important to stress that, despite the injections, we’re very lucky that we have insulin. I remind myself of that every time I struggle. The discovery and purification of insulin changed Type 1 from a terminal condition to one that we can live with.

As regards her GCSEs - could she delay them a year? Or maybe do some this year, some next? That would take the pressure off.

Do you have this helpful book?:

Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas

Tagging @Sally71 who is a parent of a Type 1 child.
 
It’s tough in the beginning, and what you’re going through sounds even tougher, I really feel for you. Not sure that I have any great words of wisdom though!

Regarding the needle phobia the only thing I can think of is if you can ask for a pump. It’s not a magic fix all and still requires a lot of work, but you only change the cannula every 2-3 days so that’s one needle every 2-3 days instead of at least 4 a day, then to give herself a dose of insulin in the meantime she’s just pushing a few buttons. The same with blood glucose measurements, could she get a CGM (Dexcom and Libre are the most common, and she should be able to get one on prescription). This monitors her blood sugar levels with a sensor in the skin which lasts 10-14 days, it does not completely remove the need for finger pricks but reduces it quite a lot!

You can also get EMLA cream to numb the skin, or just use ice, would that help with the needles?

Good luck with CAMHS, I went through the same with my daughter (for different reasons) and they are so overloaded it can take a long time before you get to the top of the list. Which isn’t very helpful when you are desperate. One time I was in tears down the phone to them because we thought daughter might have broken her toe but she flat out refused to remove her socks to allow anyone to examine it and would honestly rather her foot had fallen off than allow anyone to look at it. After that they did get someone checking in on us occasionally, but it still took quite a while before we got the required therapy. Once they are dealing with you they are pretty good.

GCSEs - your daughter should be allowed rest breaks if necessary, so if she has any sort of diabetic problem they will stop the clock until she has dealt with it and then she can continue and won’t lose any exam time. She must also be allowed hypo treatments and testing equipment in the room with her. Make sure the school are aware of this and put the necessary measurements in place.

I’m sorry I can’t think of anything more helpful, it’s a lot to learn in the beginning, it does get easier with time though. Good luck, I hope you can access some help soon.
 
Hello and welcome. Falling in between kids and adult services makes it much harder. Can you fight for her to be seen by the paeds team until the summer? She will have much more support and have access to a psychologist with them.

My kid was 8 when diagnosed and seemed to embrace it all but a few months down the line we had major issues with him refusing insulin. He’s now 14.

If she’s still high then she may well be not at her best in terms of compliance. My kid is always way harder to persuade to do the stuff he normally does when he’s high. It’s not uncommon at the beginning to reduce blood glucose slowly as it’s gentler on the body so don’t worry too much right now.

WRT GCSEs be lead by her. She can sit them this summer, sit some of them this summer, not sit them until the autumn “resits” or repeat a year. But she doesn’t need to decide right now. She can decide on each day of the exams. There should also be a chat with the school to give her breaks if needed - if she has a hypo she should have a much longer break than just coming back into target as it can mess with your head for an hour or so afterwards. Again this is something that would benefit from being under the paeds team as they have much more experience.

It does get easier but there is so much info in the first few weeks and you’re also all dealing with the emotional fallout. Wearer here to support you.
 
Things have obviously changed a lot since 1967 when I was diagnosed as an 8 year old. But keep going. It's not all bad. I am still very fit and well. I ran a 1.59.11 half marathon recently. I have no retinopathy or neuropathy. Be positive! I am probably fitter and healthier than many of my contemporaries. There was certainly no tech when I was diagnosed. But I am still going. Come on!
 
Hello and welcome @Properbrew I'm sorry to hear about your daughters recent diagnosis.

Diagnosis is a total shock to everyone concerned and sadly there's no time to adjust gently to the new situation or just do a bit of diabetes.

That is tough to be put straight into an adult clinic, I moved from paediatric to adult at 16 this was 40+ years back and found the difference in direct attitude about my attempts at managing Type 1 were tough to deal with. I think things have improved with acknowledging the challenges of managing diabetes and the effort it takes. Some areas run a young adults clinic, it is worth asking if there is such a clinic near you where they are more switched on to the worries and concerns of teens to late 20's.

This is good information from the Diabetes Uk site on transitioning to an adult clinic - I know your daughter hasn't been at a paediatric clinic - but worth a read to see what should be provided

Transitioning into adult diabetes clinics

When you get older you’ll move into either adult or young adult care from child care, most healthcare professionals call this transition. Transitioning to an adult diabetes clinic is all about making sure you have all the skills you need to manage your diabetes independently. This is important...
www.diabetes.org.uk www.diabetes.org.uk

This has information on injecting technique and other information for tech availibility for children/teens
www.diabetes.org.uk

Children and diabetes

Are you worried your child has diabetes? Find out the symptoms of diabetes in children. Having a child who has diabetes can be tough sometimes. Your child will probably have to take insulin to treat it. They'll either use a pen or a pump and will eventually be able to do this by themselves with...
www.diabetes.org.uk www.diabetes.org.uk

It is a really tough time after diagnosis when reality kicks in. It does improve over time and once an insulin supply is restored you start to feel a lot better although it takes time to recover from being so unwell at diagnosis. I hope her school are open to sorting out a suitable time frame for taking GCSEs so that removes some of the immediate worry.

Wishing you well.
 
Welcome to the forum @Properbrew . I am sorry to read of your daughter’s diagnosis. Such a difficult time for her, and whilst we can tell you that this is manageable and T1 does not need to limit her in the future, it is understandably difficult to get through these early days.

With regard to exams, in case she wants to take them this year as originally intended, it is essential that the school’s exams officer informs the examination boards of her situation. They can then give her extra time and apply for considerations (which needs to be done before she sits the exams). In situations like this if your daughter feels able to sit the exams, even if she does not feel that she will do her best, she may find this easier than taking them later. Repeating a year is often weird as all her friends will have moved on, however this may be possible to do at the college. There are always ways round the problems.

You mention that the adult team are liaising with the Paeds team. They will have dealt with this situation many times before and I would push to speak to them, and ask them to contact the school as well.
 
Welcome to the forum @Properbrew , is your daughter still intending to sit her GCSEs this May? It may be an idea to speak to the school and look into pushing them back a year due to the stress of a new diagnosis combined with exams.

If so,the exams officer will work with you to get your daughter’s arrangements in place. Rest breaks should be automatic,incase your daughters BG goes high or low,plus she should be entitled to alternate room if she wants it.
 
Status
Not open for further replies.
Back
Top