So angry that my son is type 1

[lucyd87]

Hi everyone,

I have 2 beautiful children and my eldest who is 9 was diagnosed as type 1 back in January. It came as a massive shock and at first he was treating with finger pricks and pens, then got the dexcom g6 and now has an insulin pump. He is amazing with it and it really doesn't seem to phase him. Like at half 4 the other morning he woke me up because he'd managed to pull his cannula out in his sleep so I had to put a new one in. If that was me I'd be so annoyed be he just takes it in his stride. At the moment though, I'm just so angry at the situation. He keeps having night time highs a couple of hours after going to bed. Sometimes he can be pretty steady but sometimes he has a big spike and no amount of insulin will being him down for a couple of hours. I hate it so much. I think it's only now I've got to grips with this being the rest of his life and I just wish I could take it from him and put it on myself!

 

[Jaylee]

Hi everyone,

I have 2 beautiful children and my eldest who is 9 was diagnosed as type 1 back in January. It came as a massive shock and at first he was treating with finger pricks and pens, then got the dexcom g6 and now has an insulin pump. He is amazing with it and it really doesn't seem to phase him. Like at half 4 the other morning he woke me up because he'd managed to pull his cannula out in his sleep so I had to put a new one in. If that was me I'd be so annoyed be he just takes it in his stride. At the moment though, I'm just so angry at the situation. He keeps having night time highs a couple of hours after going to bed. Sometimes he can be pretty steady but sometimes he has a big spike and no amount of insulin will being him down for a couple of hours. I hate it so much. I think it's only now I've got to grips with this being the rest of his life and I just wish I could take it from him and put it on myself!

Hi,

Welcome to the forum.

I'm a T1 son of a mum. If it's any consolation to you.
Don't beat yourself up.
I'll tell you what I told mine. (But paraphrase to stay in line with the forum rules.)

Sheds happen.

Don't let it consume you.

 

[Antje77]

Hi @lucyd87, welcome to the forum.

Please allow youself to to be angry and sad and frustrated and proud and angry again!

Getting to terms with a life altering thing like diabetes in a child isn't easy, and it's very similar to a mourning process, including anger and feelings of guilt.

That's alright, however hard it is.

Have you looked for parents in the same situation? It can be very helpful to know you're not alone.

Wish you all the best!

 

[Resurgam]

Your son is already benefiting from the revolution in the treatment of type 1, there is technology to help - it will get better and there will be more of it - though you might be able to help with the highs by keeping a record of what he ate and when - there might be a pattern and humans are very good at spotting patterns.
Please do try to be at least a little more philosophical, your son is still very young and he might feel that as you are angry about him being ill that it is somehow his fault.

 

[Marie 2]

It will always make you angry sometimes, and that's okay................But at least we are alive and living almost normal lives. At one time that wasn't so. So remember life has gotten much better and we even have tools, better insulins and maybe sometime in his lifetime an actual cure.

 

[In Response]

Please don't think of Type 1 as being life changing.
As others have said technology and treatment has come a long way in recent years and continues to advance.

There are world class athletes and sportsmen with Type 1, pop stars with Type 1, hey, there was even a prime minister with Type 1.

I was diagnosed later in life ... I know what life is like without Type 1 and the only difference is I have to carry a bag with me. I still do all I did beforehand and more.

Type 1 us scary but it does not have to be life changing.

 

[Jaylee]

I was diagnosed later in life ... I know what life is like without Type 1 and the only difference is I have to carry a bag with me. I still do all I did beforehand and more.

Type 1 us scary but it does not have to be life changing.

It's a little bis more than just carrying "extra..."
Family dynamics can change? No lad likes to see his mum upset.

 

[lucyd87]

Thank you so much everyone for your lovely replies! I never let my son see me angry or upset about his diabetes, I constantly tell him how proud I am of him and I follow a few diabetes pages on social media and whenever they post a story about someone with diabetes who had become successful I always show him. One of the boys in his class is type 1 which is how I was so aware of the symptoms and I always speak to his Mum, she's being incredibly supportive! I think my biggest worry is for the future. My son is also autistic. He will definitely be capable of having a job if he puts his mind to it but I do worry about how he will cope with his condition. I know that sounds silly but my mind does tend to wonder, especially at 2am when I'm getting up to give a correction.

 

[lucylocket61]

Please don't think of Type 1 as being life changing.
As others have said technology and treatment has come a long way in recent years and continues to advance.

There are world class athletes and sportsmen with Type 1, pop stars with Type 1, hey, there was even a prime minister with Type 1.

I was diagnosed later in life ... I know what life is like without Type 1 and the only difference is I have to carry a bag with me. I still do all I did beforehand and more.

Type 1 us scary but it does not have to be life changing.

It is life changing for the parents of young children, plus all the emotions around their child. I am a carer for my adult son, not diabetes, but yes, its life changing for everyone affected by it, particularly in the early years post diagnosis.

 

[lucylocket61]

Thank you so much everyone for your lovely replies! I never let my son see me angry or upset about his diabetes, I constantly tell him how proud I am of him and I follow a few diabetes pages on social media and whenever they post a story about someone with diabetes who had become successful I always show him. One of the boys in his class is type 1 which is how I was so aware of the symptoms and I always speak to his Mum, she's being incredibly supportive! I think my biggest worry is for the future. My son is also autistic. He will definitely be capable of having a job if he puts his mind to it but I do worry about how he will cope with his condition. I know that sounds silly but my mind does tend to wonder, especially at 2am when I'm getting up to give a correction.

ah, the 2am wobble. I know it well. It might be worth looking at grief counselling or information about grief as the emotional reaction to this sort of thing can, for some people and circumstances, be very similar in some ways, and you may find help from the grief information and help. My son is also autistic and has severe sensory issues.

 

[Tony337]

Hi
I'm 53 but was diagnosed aged 6 and my sister aged just 3 she is now 57.
My parents felt the same as you but we are both working and driving so the futures bright and when I think back we had harpoons instead of needles and could only test our urine and not our blood and pumps were for PE at school.....lol
Good luck and please remember you are not alone...

Tony

 

[NicoleC1971]

Thank you so much everyone for your lovely replies! I never let my son see me angry or upset about his diabetes, I constantly tell him how proud I am of him and I follow a few diabetes pages on social media and whenever they post a story about someone with diabetes who had become successful I always show him. One of the boys in his class is type 1 which is how I was so aware of the symptoms and I always speak to his Mum, she's being incredibly supportive! I think my biggest worry is for the future. My son is also autistic. He will definitely be capable of having a job if he puts his mind to it but I do worry about how he will cope with his condition. I know that sounds silly but my mind does tend to wonder, especially at 2am when I'm getting up to give a correction.

Glad you've got fellow type 1 mum support! I was diagnosed at same age and also got on with it but am horrified to think of how my parents felt and feel having now had 3 kids myself.
On a practical note there are few things to bear in mind with a night time high (and you are correct in noticing that it is very hard to bring down highs with extra insulin hence better to get out ahead by adjusting the basal if there is a pattern? Or thinking about using the pump to do a split dose if eating a fatty meal e.g. pizza is causing delayed carb absorption). His pump should have that option.
You have Dexcom which is great as I assume you're getting his reading via the Share function? Although not so great if you are constantly aware of blips!
I've just graduated to Dexcom plus Tandem Basal Iq control pump which, hiccups aside, is helping auto correct highs and prevent hypos. Doesn't mean I can eat a bag of doughnuts but this and Dexcom Clarity app are giving useful information too and when it works it is great at keeping me 'in range' ....,.
You're not on your own and your son will be stronger from managing this IMO! It seems you are carrying the emotional burden right now more than anyone else, so please get as much support as you can get and give yourself the credit you deserve for getting to grips with this yourself.

 

[Tashaphib]

Hi everyone,

I have 2 beautiful children and my eldest who is 9 was diagnosed as type 1 back in January. It came as a massive shock and at first he was treating with finger pricks and pens, then got the dexcom g6 and now has an insulin pump. He is amazing with it and it really doesn't seem to phase him. Like at half 4 the other morning he woke me up because he'd managed to pull his cannula out in his sleep so I had to put a new one in. If that was me I'd be so annoyed be he just takes it in his stride. At the moment though, I'm just so angry at the situation. He keeps having night time highs a couple of hours after going to bed. Sometimes he can be pretty steady but sometimes he has a big spike and no amount of insulin will being him down for a couple of hours. I hate it so much. I think it's only now I've got to grips with this being the rest of his life and I just wish I could take it from him and put it on myself!

hi im tasha i have 4 beautiful children and my 7 year old son was diagnosed with type 1 diabetes 2 weeks ago. it also came as a massive shock to myself and his dad... we are currently doing finger pricks and pens and just feel so guilty that he has to live with chronic illness for the rest of his life and while my others dont have to worry about what they eat my son has to think about everything and the feeling of guilt is unbelieveable

 

[EllieM]

we are currently doing finger pricks and pens and just feel so guilty that he has to live with chronic illness for the rest of his life and while my others dont have to worry about what they eat my son has to think about everything and the feeling of guilt is unbelieveable

I became diabetic at 8 and though I didn't know this until adult my T1 mum felt amazingly guilty at the time, specially since 50 years ago the treatment for T1 was much less advanced than it is now. From my point of view, I have never blamed my parents for my diabetes, (why would I ?) I am just enormously grateful that I have insulin to keep me alive and let me lead a normal life and they have always supported me to do so. Grieve if you want to, your son will have to live with this condition, but don't feel guilty.

Lots of virtual hugs.

 

[Resurgam]

We have just visited my daughter and son in law at their new house.
Their new fridge beeps if the freezer drawer is left open or the door ajar. The fan turns itself on and off, blinds go up and down at the touch of a button - so much has its own sensor and can be set to the levels they find comfortable.
Things can only get better.

 

[Katswan]

Hi everyone,

I have 2 beautiful children and my eldest who is 9 was diagnosed as type 1 back in January. It came as a massive shock and at first he was treating with finger pricks and pens, then got the dexcom g6 and now has an insulin pump. He is amazing with it and it really doesn't seem to phase him. Like at half 4 the other morning he woke me up because he'd managed to pull his cannula out in his sleep so I had to put a new one in. If that was me I'd be so annoyed be he just takes it in his stride. At the moment though, I'm just so angry at the situation. He keeps having night time highs a couple of hours after going to bed. Sometimes he can be pretty steady but sometimes he has a big spike and no amount of insulin will being him down for a couple of hours. I hate it so much. I think it's only now I've got to grips with this being the rest of his life and I just wish I could take it from him and put it on myself!

hi my son was diagnosed in march as type 1 and just 7 years old! We are doing well but we are also recently having problems with night time highs….. he will go to bed and be 6-9 and then at 1030pm when we check at our bedtime he sometimes goes up to 14-18!!! This last week I have been writing his evening meals down and when it is at its worst is when he has had pizza, bread, chips and sometimes pasta so these are trigger foods for highs… it is stressful seeing him go high and not come down as his correction dose doesn’t do what it says so I feel this needs adjusting too… there will be easier times and then harder times where you will stress out at his highs etc but our diabetes team are sooo good and there!! Xx

 

[Marie 2]

@Katswan One of the problems you want to watch is high fat with high carbs foods/meals. Fat delays the absorption of the carbs.....................and that can be hours and hours later. Pizza is a notoriously hard food to bolus for even for long term type 1's. Some people are taking insulin hours after they eat it. Pizza is a combo of high fat, high carbs and protein and even the protein can raise your BG level a few hours later. It could be some of the pasta dishes are a high fat combo too and that is causing a delayed response. Chips are also high carb, high fat. Plain bread shouldn't cause a delayed issue. It takes time to learn the tricks and how to deal with it. You could try keeping evening meals lighter in fat so it's not hitting him so much later. Always do small changes when dealing with possibly changing insulin needs. If you suddenly cut out all fat at dinner his dosing could be off, it's always better to be on the safer side.

Solutions are different.......some people rarely eat pizza, but a couple of nicer/better solutions for higher fat/carb meals is eating them at lunch on the weekends so you can burn it off and keep track of BG levels more. Or lowering the fat content of the pizza. Eating a smaller amount. I am a vegan and the pizza I usually eat is still a little higher fat, it's not close to what regular pizza is. My dosing for when I eat mine is split into thirds. But a place near me started making vegan pizzas with vegan cheese and a non tomato sofrito sauce and I learned how hard it can be to dose for pizza.

Most type 1's can eat what ever they want, you just have to learn how to dose for it.

 

[vic hill]

Hi everyone,

I have 2 beautiful children and my eldest who is 9 was diagnosed as type 1 back in January. It came as a massive shock and at first he was treating with finger pricks and pens, then got the dexcom g6 and now has an insulin pump. He is amazing with it and it really doesn't seem to phase him. Like at half 4 the other morning he woke me up because he'd managed to pull his cannula out in his sleep so I had to put a new one in. If that was me I'd be so annoyed be he just takes it in his stride. At the moment though, I'm just so angry at the situation. He keeps having night time highs a couple of hours after going to bed. Sometimes he can be pretty steady but sometimes he has a big spike and no amount of insulin will being him down for a couple of hours. I hate it so much. I think it's only now I've got to grips with this being the rest of his life and I just wish I could take it from him and put it on myself!

TRY NO TO WORRY is easy said that done now on my 65 year of insulin by pump by pen and very old types of syringe 1957 when i was 12 todays hi tech and new improvements look forward to a very much better life style