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Insulin refusal! Please help

 
Hi there
My son was 12 when diagnosed
1year after this I went through a divorce and things were tough
His control went off track and it was a difficult time . I struggled to get him to school with high readings and low and I was beside myself
Once I got him back into the clinics and he got 15-16 it got so much better but as a mum it’s absolutely exhausting and terrifying
He’s now 26yr old young man finished uni runs his own dog waking business and writes for a football column . He has a beautiful girlfriend and is fit and healthy
If anyone told me that 12yrs ago I wouldn’t have believed it.
I am telling you this because it does get better and eventually they work it out for themselves
I was all over him with readings and management but he had to figure it out for himself
Here for you anytime and you are doing a fabulous job!!
 
Hi there, reading your story reminded me of the difficulties I had through the teenage years. I was diagnosed at the age of 7yrs and have no memory of ever not being insulin dependent.
The only thing that pulled me back into line was my diabetes nurse specialist and consultant introducing me to some of the inpatient diabetics who had limb amputations and one who was blind. I will never forget this. Tough live was the only thing that motivated me.
I am now 46 and suffering all the major long term diabetes associated opathies.
I lost my previous job due to health problems but since getting an insulin pump and lots more meds I have managed to get back to work in the pharmaceutical sector.
I represented GB in athletics, did pretty well academically but despite all my best efforts - I still had times of difficulty such as your son is having and I am now suffering the consequences.
I would be happy to chat with your son, or yourself if this may help? I am a father of 5 + 2 step children and my greatest fear was one of them developing IDDM. It was very hard for my mother and it must be a living hell for you.
If you want to chat further - I’m more than happy to help out if I can.
Best Wishes,
John
 
Hi, sorry to here you and your son are going threw this, I’m 34 and had it since I was 11, exact same I was great to start with then became resentful, a big part of the problem was that no one who has not got it can truly understand what it’s like, and the other is the more that someone gets on at you the farther you fall, I heard all the you will regret it when your older, and I do after six operations to restore my sight, talk to him like an equal, because that something I never got, doctors are not exactly great for help as again they don’t live with it, and yes he will be irrational, and the worse the sugers are the more irrational he will get, take him a walk as it helped me become more rational, I always wished to be normal, it took a very long time for me to realise that I’m not abnormal, the biggest thing for me was the realisation that no matter how much I wish it’s not going away and I’ve got it for life, it does get better, but at least for me it was a long journey,
 
I was exactly the same when I was younger. I got diagnosed at 19 im now 32. I didn't realise how serious having diabetes was from the high blood sugars to the lows. I am now experiencing complications from having my diabetes out of control for so long. Neuropathy and Retinopathy. Maybe try to explain to him just how serious it is and the complications that come with not treating it correctly.
 
It sounds like he hasn’t really come to terms with it and feels invincible. Unfortunately he will come down with a bump and realise it’s not now he has to look after, but his future. I’ve been one for nearly 60 years and have always accepted it. But there were times when younger I felt I could eat and do what I want just like my mates. I caught meningitis and lost my hearing. I realised after taking 20 mins to complete a six piece wooden jigsaw at 16 that I had to be the one in control and not the illness. So here I am still living and walking the tightrope. Don’t get me wrong, I enjoy life and as time has gone on I’ve changed to having a little treat here and there. Time and condition are very important to me knowing I wake up feeling good each morning with living alone.
 
Hi citrus2512

Sorry to hear your son and you are going through this. I'm T1 since I was a teenager and the idea I had to be 'good' all the time 'or else' really took its toll back then, now in my 50s. As a teenager you of course think you are the centre of the world and therefore everything that is happening to you is your fault. It took a particularly nice nurse to say to me 'it's not your fault' before I really took on board the importance of managing my insulin.

Be careful also on social media. My teenagers are constantly being bombarded with fitness and weight loss clips. They all talk about managing your insulin, insulin resistance and that excess insulin puts weight on. These are non diabetics. T1s it's insulin first, feeling well and then managing weight.
 
 
I had this with my son at about the same age, puberty and attempting to be independant from parents play a big part of it. We went through years of trauma over the battle to get him to be a " good" diabetic, but in the long run stepping back and saying it was his choice and trying to give him as much independence as possible & saying that we cared about "HIM" and his happiness not about his diabetes care or not, was the only thing that eventually got him to the point of looking after himself correctly. All young teanagers will reject parental opinions and try to rebel - weather it is over music choice, hairstyles or when/how to take insulin. If you try to not show how worried you really are, then it will not be a big teenage independence rebellion. Keeping a good relationship with your son is essential & if the relationship becomes a battle over insulin between you, it can only get worse. My son finally started getting really good at self care around the age of 20 and now at 29 he is almost an ideal diabetic, but damage was done from years of fighting to make his own choices of how to look after himself so the sooner you can get him past this phase the better. The weight gain actually shows he is getting enough insulin of some type, if he was short he would be losing weight rapidly - at one point my son lost 12kg in just 3 weeks, at around 14/15 years - just because he was not taking enough insulin. being a parent is tough but the job of a parent is to teach children to look after themselves & that requires kindness, understanding, tolerance and sometimes letting them make mistakes and someone else being the one to tell them they are not getting it right when they land up in hospital - but rebelling against hospital staff will allow them to learn and recognise that it is their choice about how to look after themselves and be better than rebelling against you. Be there to pick up the peices when it goes wrong and dont condem him, but praise him for the stuff he does get right will help promote the good behaviour and self care. As others have said sugar causes highs so you will not get rationality at that point,- yes a long walk, game of football or cycle ride is the best cure at that point as it stops the arguing and cures the highs.
 
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Hello there

I'm really sorry to hear that your son is struggling. Sadly I am very familiar with his story as it is very similar to mine. I was diagnosed at age 25, 11 years ago. The first 2 years, my control was really good but I have perfectionist tendencies and I really struggled on days where I was trying so hard to manage my diabetes but the effort was not reflected in my glucose levels. Over time this started to really bother me and I hit a mental block and suffered with burnout. 9 years later and my control still isn't good but my mental health is the best it has ever been. I accept that whatever comes my way are the consequences of my actions but I know myself well enough to know that the more focus I put on my diabetes, the more my mental health suffers. I did spend some time chatting to a psychologist who was a specialist in diabetes due to me hitting rock bottom, sadly I developed diabulimia (eating disorder) I was restricting insulin to lose weight. Growing up I always had a very negative image of myself and have always been very self critical, this plus the burden of type 1 diabetes probably led to the eating disorder. Now I don't omit my insulin to lose weight, I just do the bare minimum to get by. I have been begging for an insulin pump for years now as the diabetes healthcare team have often asked what would help me to manage my diabetes better and I have always been denied due to poor control. I was told I could have one when I was able to manage my blood sugars properly and the diabetic team have just finally realised that is not going to happen, so I go for an appointment this week to discuss getting the insulin pump. I honestly believe that this will take some of the mental effort away from managing the condition and to get some control back.
I really feel for your son as the condition is so hard to deal with, not necessarily physically but definitely mentally, it is a huge burden and I imagine even more so for a teenager. It might be worth you asking your son what it is that he thinks would help him, that way he is giving you the answer rather than you trying to guess. Just let him know that you are there for him and that you will help in any way that you can or that he wants you to. I do feel that the more you try to push your son in to taking back control, the more he will push back but this is just due to being frustrated and every single one of us that is diagnosed does understand the consequences of not complying with our regime, it will just take patience, baby steps and time. Hopefully you get the answers you need from your son and he will let you help. A diabetic psychologist will really help but your son has to be completely open and honest to ensure he gets the right approach to his mental wellbeing. I really wish your son well and also you too
 
I once watched a documentary I think on the BBC about several teens with the same issues. It seemed to stem from one or both of two things. 1. Wanting to be the same as the other kids 2. An eating disorder (diabulimia)

He needs to see a specialist diabetes mental health professional, not a general counsellor.

I am so sorry you’re all going through this.
 
Hello, seeing this I'm really **** off with this situation, as the medical society is lying to everyone and taking the benefits of the laboratory of insulin! I'm T1 and I can say that your son is 100% right! FIASP is not made for the normal person! It is for high level activity persons or athletes. I recomend to use humalog instead of fiasp, as with first I had lot of eat anxiety and therefore I was always eating.
My best regards and support your son, and make the necessary pushing to him to come here to read and to share with all his frustrations, as everyone as also the same as him!
 
 
Hi @LOVART

Sorry you had this experience with Fiasp. Do you have a link to tests that show that Fiasp is for high level activity people or athletes, as I know quite a few people who don't fit this category and use it very successfully.
 
Hi there, sorry you are going through this with your son. I was diagnosed at age 13 and I have to confess I hated the world and everyone in it.
I suddenly went from a reasonably happy go lucky girl to someone who had this awful illness that was hard to understand. I had my parents, teachers and doctors and consultants all telling me what to do. I wasn’t in control of my own life anymore so I know exactly where he is at.
please reassure him things do settle down but he has to play his part in it too. I wasn’t a perfect diabetic, you would be lucky to find one. We all slip now and again but you have to get back on track. Tell him from one who knows if you try as much as you can, don’t beat yourself up if you slip now and again and take your insulin when you should, you really are laying the foundations for an easier life later on. Let him read this if it helps and I will try and answer any questions he may have. Wishing you all the best . Jackie
 
Hopeful34 said:
1Hi @LOVART

Sorry you had this experience with Fiasp. Do you have a link to tests that show that Fiasp is for high level activity people or athletes, as I know quite a few people who don't fit this category and use it very successfully.
Click to expand...

For me it's simple! I just tested! Also it was told me in off record the same information by people from endocrinologist.
But anyway:

Fiasp Side Effects: What They Are and How to Manage Them

Fiasp is a prescription drug used to help manage blood sugar levels in people with type 1 or type 2 diabetes. Learn about side effects and how to manage them.
www.healthline.com

"Examples of this drug’s commonly reported side effects include:
...
lipodystrophy*
weight gain*
* To learn more about this side effect, see the “Side effects explained” section below."





"Tell your doctor as soon as possible if you get signs of heart failure such as unusual shortness of breath or rapid increase in weight or localised swelling caused by fluid retention (oedema). "

I hope this is enough for you, but just make a small search!!!
 
 
 
Hi there I got diabetes at 11, when I was younger I regularly missed my long acting insulin injections, blood sugars sky high, ate what I wanted with chocolate, condensed milk although I did eat healthy meals. I was also quite active in football, table tennis and boxing and did all this regularly. First thing is they are just trying to be normal and do what their friends do not understanding how this can impact on them. Counselling will be good though if they are being forced to do it, it will only be detrimental to them.Your concerns are correct though and longer term it will cause them damage and end up with diabetic neuropathy or gangrene etc, at this stage they don't know about that and have no pain for that and will be out of sight out of mind so to speak. I used to write my results out night before hospital appointment until doctor said to me my h1bac levels were different to what i was writing. Next doctors appointment with specialist bring these points up but if they are not taking insulin too the blood sugars will tend to be higher and they will go to toilet a lot more and if Comfort eating if blood sugars constantly high could mean they could be hospitalised too
 
My mum was so clever, I’ve had type 1 for 43 years now. Not regarding my diabetes but other things for example. If I said I wanted a tattoo she’d say if you really want one but I read the other day a diabetic had a tattoo and it went septic and they nearly died or shed say if I wanted a motorbike, you remember Dave from that street he got a motorbike had a hypo fell off and no is paralysed. Lol she would just plant the seed and it worked I’ve never got a tattoo or a motorbike. Maybe try it ??????
 
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