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Parent of struggling T1

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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FabricJen

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Relationship to Diabetes
Parent of person with diabetes
Hello all, I've joined in the hope of getting some advice. My 23 year daughter was diagnosed T1 10 years ago and has frequently struggled to keep her glucose levels stable. She's had frequent hospital stays with DKA and has now also developed diabulimia. Finding it almost impossible to get any support from anyone. Im terrified that I will lose her
 
Hello and welcome🙂 sorry, I can't help you but there will be others along soon who can try. It must be very worrying for you.
 
Hi and welcome

So very sorry to hear about your daughter. That must be incredibly worrying. Does she live with you or is she living independently?
Has she had a DAFNE (Dose Adjustment For Normal Eating) course or whatever your local equivalent is. I know that title may seem inappropriate when she is suffering with Diabulimia but I found the course incredible helpful both in terms of what I learned but also spending a week with other Type 1s in a very non judgmental environment with great support from the course educators one of whom was an extremely experienced DSN and the other a specialist diabetes dietician. Both were prepared to go out of their way to support members of the group who needed help both during the course but also referrals/recommendations for pump therapy, Libre etc afterwards via consultation with consultants. I follow a low carb way of eating, so not what most would consider normal but I got a huge amount from the course and a lot of it was "confidence" That wonderful elusive stuff that can really make or break you if you lose it. So I would certainly recommend asking about that if she hasn't done a DAFNE course. It's main role is to reduce admissions to hospital with severe hypos or DKAs so it would certainly make a lot of sense to ask for a referral. Unfortunately many courses have been on hold due to the pandemic but I believe that they are opening up again now in many places. An in person course is so much better than the online version, simply because you get to spend time and interact and learn from other Type 1 diabetics. There was a real eclectic mix on my course from newly diagnosed to a lady with 50 years in who was hypoing really badly through the night on a very regular basis despite using only tiny amounts of insulin. She had problems with an eating disorder and had battled anorexia when she was younger. She ended up with an insulin pump within a few months of attending the course which really helped to improve her control.

The other thing I would do is encourage your daughter to join the forum and come and chat with us about her diabetes management and how she feels. It is incredibly helpful to discuss stuff.... not just the practical tips and advice..... but also the emotional and psychological impact of diabetes which is often difficult for non diabetics to fully understand.

The forum is as anonymous as you want it to be, so she doesn't need to feel vulnerable or exposed because unless we choose to meet up occasionally, all we know about one another is what we divulge on the forum. Your daughter needs to feel in control and the forum, my DAFNE course and my Freestyle Libre sensor have all given me that and it has made a huge difference in my confidence in dealing with my diabetes. I really hope we can help your daughter to find that too.

Sending (((HUGS))) to you both.
 
FabricJen said:
Hello all, I've joined in the hope of getting some advice. My 23 year daughter was diagnosed T1 10 years ago and has frequently struggled to keep her glucose levels stable. She's had frequent hospital stays with DKA and has now also developed diabulimia. Finding it almost impossible to get any support from anyone. Im terrified that I will lose her
Click to expand...

There’s a group specifically set up for people with diabetes and eating disorders. It’s called DWED. I think their website is archived but they’re active on Facebook. They really understand what it’s like. There’s also BEAT, for eating disorders in general.

As you’re probably well aware, you need to tread extra-cautiously with eating disorders as any sign of criticism or ‘helping too much’ can push people further into secrecy. It’s hard to give advice without knowing your daughter, but I’d focus on asking questions and listening rather than prescriptive ‘you must do that’, ‘you should work at this’, etc. Let her feel free to offload on you without judgement or shock from you. Never underestimate the sheer amount of anger a Type 1 diagnosis can cause. Sometimes that shows itself in unexpected ways.

I know she’s an adult now and you have to take a back step, but her diabetes dept could still give you general advice about the way they approach such things.

Also, look outside the diabetes. Is there anything in her life causing her additional stress eg work, relationships, money worries, general anxieties. Exerting control over food is a way to cope when it seems nothing else is in your control.
 
Last edited:
Inka said:
There’s a group specifically set up for people with diabetes and eating disorders. It’s called DWED. I think their website is archived but they’re active on Facebook. They really understand what it’s like. There’s also BEAT, for eating disorders in general.

As you’re probably well aware, you need to tread extra-cautiously with eating disorders as any sign of criticism or ‘helping too much’ can push people further into secrecy. It’s hard to give advice without knowing your daughter, but I’d focus on asking questions and listening rather than prescriptive ‘you must do that’, ‘you should work at this’, etc. Let her feel free to offload on you without judgement or shock from you. Never underestimate the sheer amount of anger a Type 1 diagnosis can cause. Sometimes that shows itself in unexpected ways.

I know she’s an adult now and you have to take a back step, but her diabetes dept could still give you general advice about the way they approach such things.

Also, look outside the diabetes. Is there anything in her life causing her additional stress eg work, relationships, money worries, general anxieties. Exerting control over food is a way to cope when it seems nothing else is in your control.
Click to expand...
Hello Inka, thank you so much for taking the time to reply. I dont use facebook ... yet!!...but will pass DWED and BEAT onto my daughter. As you suggest, her mental health is not robust , and that has a significant effect on how she copes (or otherwise) with her diabetic control. She has a very negative relationship with her diabetic team, in large part because of how negative she feels about diabetes itself. I have approached them for advice and support several times over the last few years but I think they consider me as an 'over protective mummy' rather than listening to and taking on board my concerns fully.
 
rebrascora said:
Hi and welcome

So very sorry to hear about your daughter. That must be incredibly worrying. Does she live with you or is she living independently?
Has she had a DAFNE (Dose Adjustment For Normal Eating) course or whatever your local equivalent is. I know that title may seem inappropriate when she is suffering with Diabulimia but I found the course incredible helpful both in terms of what I learned but also spending a week with other Type 1s in a very non judgmental environment with great support from the course educators one of whom was an extremely experienced DSN and the other a specialist diabetes dietician. Both were prepared to go out of their way to support members of the group who needed help both during the course but also referrals/recommendations for pump therapy, Libre etc afterwards via consultation with consultants. I follow a low carb way of eating, so not what most would consider normal but I got a huge amount from the course and a lot of it was "confidence" That wonderful elusive stuff that can really make or break you if you lose it. So I would certainly recommend asking about that if she hasn't done a DAFNE course. It's main role is to reduce admissions to hospital with severe hypos or DKAs so it would certainly make a lot of sense to ask for a referral. Unfortunately many courses have been on hold due to the pandemic but I believe that they are opening up again now in many places. An in person course is so much better than the online version, simply because you get to spend time and interact and learn from other Type 1 diabetics. There was a real eclectic mix on my course from newly diagnosed to a lady with 50 years in who was hypoing really badly through the night on a very regular basis despite using only tiny amounts of insulin. She had problems with an eating disorder and had battled anorexia when she was younger. She ended up with an insulin pump within a few months of attending the course which really helped to improve her control.

The other thing I would do is encourage your daughter to join the forum and come and chat with us about her diabetes management and how she feels. It is incredibly helpful to discuss stuff.... not just the practical tips and advice..... but also the emotional and psychological impact of diabetes which is often difficult for non diabetics to fully understand.

The forum is as anonymous as you want it to be, so she doesn't need to feel vulnerable or exposed because unless we choose to meet up occasionally, all we know about one another is what we divulge on the forum. Your daughter needs to feel in control and the forum, my DAFNE course and my Freestyle Libre sensor have all given me that and it has made a huge difference in my confidence in dealing with my diabetes. I really hope we can help your daughter to find that too.

Sending (((HUGS))) to you both.
Click to expand...
Thank you so much Barbara, she does live with me... although spends at least half of her time with her boyfriend. She is an adult; she works and is fiercely independent. We have a great relationship and she talks openly to me but I still feel at such a loss about how best to support her. She has never done a DAFNE course and I think it would be really helpful but Im not sure she would agree at the moment. She asked repeatedly to have access to Libre, as did I when she was with the paeds team but in our area Libre is only for those who already have excellent control. She was told at one point that she could have a cgm if she tested and corrected eight times a day for 3 months; she did this, and was then told that if she carried on for another 3 months she might be eligible.... sigh.
Constantly moving goalposts seem to be a ' thing' in her diabetic care.

I think joining this forum is an excellent idea . I will do my utmost to drop the hint in a gentle and positive manner!!!
Jenny
 
Really disappointing and frustrating that her team dangled a carrot for her to improve control and then withdrew it. Also not good at all that you get the feeling they see you as an overly worried Mum when their records must clearly show your daughters admissions for DKA, as those should be big red flags that she needs extra support not less and it should be their priority to help such people. I appreciate that if your daughter has lost faith with the clinicians then it will be difficult from both sides to build a good working relationship back up. I wonder if a change to a different diabetic clinic might help your daughter to start from scratch and find some better support. Do you have another hospital not too far away that she could try? She would need to ask for a referral from her GP I believe.

You may be interested to know that the NICE guidelines for Libre prescription are changing very soon and all Type 1 diabetics will now be eligible for Libre, which is a massive step forward. It may involve being a bit pushy still (sadly we do often need to fight our own corner when we need support or tech) and I am sure that will be very difficult when your daughter is struggling mentally, which is why the DAFNE course helped... it does open doors and help to have someone advocate for you. Would she be comfortable with you advocating for her?
I am not sure if this is an option, but many of us self funded Libre for a few months before getting it on prescription. I know it is very expensive but I used my birthday money from family to do that and it was the best present anyone could have given me. Of course, if your daughter resents her diabetes then she may resent getting a Libre instead of a nice new phone or a handbag or whatever. Only you will know. Abbott are currently doing a 2 week free trial though, so if she hasn't tried Libre but feels it would help, then that might be something to apply for. She just needs to have an appropriate smart phone to use as a reader.

Anyway, I really hope that some of our input will be helpful to you and your daughter. Not everything works for everyone with diabetes. The beauty of this forum is that we can suggest lots of different things for you/your daughter to try, so that she can find what works for her as an individual.
 
I cant tell you what a relief it is to read your messages. I feel like ive been banging my head against a brick wall. I agree that struggling diabetics need more support not less but I have just found out that her diabetic consultant has discharged her because she missed an appointment... . We live in the West Country; the next nearest hospital with a diabetic team is 50 miles away. Im fuming so much over her being discharged that im tempted to look seriously into transferring however difficult it is!
 
She was told at one point that she could have a cgm if she tested and corrected eight times a day for 3 months; she did this, and was then told that if she carried on for another 3 months she might be eligible.... sigh.Constantly moving goalposts seem to be a ' thing' in her diabetic care.

Ah, yes - I know the feeling. That’s what my Trust did - set up hoops to jump through, and then when you’d finally jumped through the hoops and victory was in sight, they set up some more 🙄 My Trust did it because “too many people were benefiting from the Libre”. 🙄 It’s the pen-pushers’ fault probably more than her actual clinic, so do point that out to her. My consultant certainly didn’t agree with the ridiculous amount of hoops that had been set up. So do encourage her to keep pushing, especially as guidelines are changing. TBF, I’d also point out that she might be more likely to get one if she could show she’s working on the diabulimia. This is because the Libre can be another focus for obsessive/controlling behaviour.

There’s an online version of DAFNE that your daughter might prefer: BERTIE:

https://www.bertieonline.org.uk/

She can do it in her own time and in private without fear of judgement.

Type 1 will mess with your head if you let it. It’s a big burden work-wise and also emotionally. It’s like a full-time job. It’s very easy to see not engaging with it, as a way to beat it. But it’s not. That’s handing the power to the diabetes, and letting it win. If your daughter can channel her emotion and focus on beating diabetes by systematically doing her best to control it, then she’ll be winning against it and she’ll be in charge. That’s how I channel my hatred of it.
 
Hello and welcome @FabricJen

I’m so sorry to hear about your daughter and the worry it is understandably causing.

Disordered eating and/or insulin manipulation is not uncommon in people with Type 1 with approx 4 out of ten young women and 1 in 10 young men aged 15-30 being affected by it. This information from Diabetes UK is very useful and also includes a link to FREED not specifically for diabulimia but may be of use.

Eating disorders and diabetes

Some people living with diabetes can develop an unhealthy relationship or fixation on food. This can lead to something called disordered eating behaviour or possibly an eating disorder. Diabetes and food are closely linked. Living with diabetes can mean a bigger focus on diet, weight and body...
www.diabetes.org.uk www.diabetes.org.uk

Diabulimia and diabetes

Type 1 diabetes with disordered eating (T1DE), also known as diabulimia, is a serious eating disorder that people with type 1 diabetes can develop. What is diabulimia? Type 1 diabetes with disordered eating (T1DE) or diabulimia is an eating disorder that only affects people with type 1 diabetes...
www.diabetes.org.uk www.diabetes.org.uk

There a few excellent centres working specifically with T1 and eating disorders but coverage and access is pretty limited. This is information from Kings College where they run an integrated clinic https://www.kch.nhs.uk/service/viewservice?servicename=Type 1 Diabetes with Disordered Eating (T1DE)

I lived with diabulimia/insulin manipulation throughout my 20's and much of my 30's. It is an incredibly tangled web of an illness and it is easy to find yourself in that situation without ever setting out to end up there. A very slippery slope that takes a lot of work and help to get out of. If your daughter is able to tell someone in her medical team what she is doing that is a good place to start. I know it is incredibly difficult to speak openly about it but it is the best way to start to get appropriate help. I was initially met with "but you're insulin dependent, just inject and eat normally", "pull your socks up or else you'll be really ill" and questioned for having a rapidly deteriorating HbA1c - this was about 30 years back before diabulimia had a name and I hope things have improved with better awareness now. Eating disorders are really powerful illnesses both mentally and physically and diabulimia stopped me from doing what I knew I needed to do however much I reasoned with myself.

Ask everywhere you can for specific help with Type 1 and eating disorders, it is a complex situation and it needs specific help. I was referred to a non diabetes eating disorders psychologist who couldn't help me with the fact I was in charge of my insulin and those appointments really didn't help my situation . It wasn't until I was eventually referred to an eating disorders clinic and my diabetes consultant worked with them to help me out that I started to improve.

I'm so sorry she has been frustrated by the chance to use tech to help her. There is a free 2 week trial of Libre here if you meet the criteria https://www.freestylelibre.co.uk/libre/

It is a challenge but there is specific help out there although it takes a lot of asking and waiting plus being able to make difficult changes and stick with them to get to a happier place with diabetes. It is doable.

I wish you all well and hope things can start to improve for your daughter. Best Wishes.
 
Just want to say that I watched that video interview with Lindsey Choules about her struggle with Diabulimia and I have to say what an absolutely inspirational young woman! It really shone a light on the issues and made it so understandable how this condition develops particularly at such an impressionable age and in a society which is so obsessed with image and body consciousness. It makes me realise just how lucky I am to have developed it later in life.

I wonder if it might help your daughter to view that video so that she can see someone that she can relate to discussing the issues.
 
The Lynsey Choules video is excellent. She describes the struggles with diabulimia so well and it is everything I went through.

The advice to activate the help you already have, family, friends etc is great advice. Others do know when something is not right and that help is priceless as a starting block to getting to a better place. I hope it can help your daughter and yourself @FabricJen 🙂
 
Nothing further to add from the links and resources already shared, but just wanted to say “welcome”, and glad you are here.

We may not be in your situation, and some of us may not be able to understand it as well as others, but we are here for you, and we are here for your daughter. This is a safe space for you to offload, rant, moan, vent and ask any question you have.

BEAT changed their web address not so long ago, and is now at

www.beateatingdisorders.org.uk

The UK's Eating Disorder Charity - Beat

Struggling with an eating disorder? Caring for someone who is? Beat is here to support you.
www.beateatingdisorders.org.uk www.beateatingdisorders.org.uk
 
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