Being a parent of a child with type 1

[Sl1990]

My son was diagnosed back in Feb of this year.
Then night that we found out was a big blow, one I can only compare to grief really.
At the time I was also 6 months pregnant.
Sometimes I just feel like everything is so overwhelming...
I feel selfish for thinking it as I’m not the one that is going through it my son is.
To begin with we had really good control but since August his control has been really bad, mostly hyper S which I know can be corrected through adjusting his insulin amounts but it just seems like whatever we do nothing sticks... he may have a day or 2 where he’s fine and in range and then all of a sudden it goes back to being high again.
There’s just so much that comes with T1D that I never even imagined.
I’m due to return to work after xmas and at the moment my son is having appointments every 4-6 weeks (clinics and also consultant appointments) and work are already seeing it as an inconvenience.
It amazes me that some people are just so unaware of Diabetes in general let alone the different types...
I just feel like I’m letting my son down all the time.
I worry about his future, he’s falling so far behind in school because he can’t settle down after blood glucose tests or injections, having the time off to go to appointments. I worry about my daughter being diagnosed.
I worry that eventually work will just get rid of me because I have to take so much time off just to take him to appointments or because something has happened at school.

I’m sorry it’s such a long post I just needed a release to my thoughts.
I really do hope that one day a cure is found, I hate that my son has T1D.

Thanks

 

[Juicyj]

Hello @Sl1990 Although not a parent of a t1 child myself I can really understand your emotions, I went through a period of grieving after diagnosis and it's natural to feel a whole range of emotions with this. You sound like a wonderful mum, so try and take each day at a time, i've found doing some fund raising has helped me connect with other t1's as well as doing something worthwhile which I hope will ultimately lead to a cure so support JDRF - have you got in touch with them ? They arrange days for kids to get together and it's a good opportunity for both your son and you to make friends - https://jdrf.org.uk/ I am mum to one child and I really hope she doesn't develop this, I really do think it's so unfair on kids.

Also talk to your DSN about getting access to an insulin pump, children should be entitled to one according to NICE guidelines, it means children having much tighter control and it's easier to monitor doses on a pump and communicate regularly with your DSN as you speak or email to review results regularly, helps parents feel more supported, good luck let us know how you get on

 

[Sl1990]

Hi thank you for the reply
I have been thinking about fundraising or looking for events for my son to get to know children his age who are going through the same thing as him, I was told about JDRF but didn’t know that they would do things like this so I will have a look at that.
We have asked about a pump but he can’t have one until his levels are more controlled but that is what we’re aiming for at some point in the near future as I think it will help him at school a lot more as he won’t need to leave class for his injections.
Thanks again for your reply

 

[JMK1954]

I'm so sorry to hear that you're in this situation. The diagnosis must have been a big shock.
If you're adjusting insulin, have you been given advice about counting carbohydrates ? How old is your son ? Sorry for all the questions but the answers will help people on here to suggest things that could help.

 

[Sl1990]

We have been given training for carb counting usually if we need to change his ratios we call the nurse first just to make sure.
He’s 7 years old and has come out of his honeymoon phase since around August

 

[fletchweb]

My son was diagnosed back in Feb of this year.
Then night that we found out was a big blow, one I can only compare to grief really.
At the time I was also 6 months pregnant.
Sometimes I just feel like everything is so overwhelming...
I feel selfish for thinking it as I’m not the one that is going through it my son is.
To begin with we had really good control but since August his control has been really bad, mostly hyper S which I know can be corrected through adjusting his insulin amounts but it just seems like whatever we do nothing sticks... he may have a day or 2 where he’s fine and in range and then all of a sudden it goes back to being high again.
There’s just so much that comes with T1D that I never even imagined.
I’m due to return to work after xmas and at the moment my son is having appointments every 4-6 weeks (clinics and also consultant appointments) and work are already seeing it as an inconvenience.
It amazes me that some people are just so unaware of Diabetes in general let alone the different types...
I just feel like I’m letting my son down all the time.
I worry about his future, he’s falling so far behind in school because he can’t settle down after blood glucose tests or injections, having the time off to go to appointments. I worry about my daughter being diagnosed.
I worry that eventually work will just get rid of me because I have to take so much time off just to take him to appointments or because something has happened at school.

I’m sorry it’s such a long post I just needed a release to my thoughts.
I really do hope that one day a cure is found, I hate that my son has T1D.

Thanks

You know, I think it's much more difficult being a parent of a diabetic today than it was back in the 1960s and 1970s. When I was diagnosed in 1966 the management of diabetes was a hell of a lot simpler - it was called "How to extend one's life". I had one shot a day that my mother would do until I was 6 and then I started injecting myself. Testing then was dropping a tablet in a test tube of urine to see if your kidneys were spilling any sugars.

I think there was less to learn back in those days from a parenting perspective - now with technology and medical philosophy and the "tight control" agenda that many health professionals subscribe too - things have suddenly got very complicated.

Hopefully that has equated to lower incidence of complications although it's likely those stats are not availabe. All the best with your situation. Speaking as a Type 1 - it must be worse for the parents - definitely!

As for your kids future - I did terrible in school, probably for much the same reasons but I did go on to get a couple of University Degrees and Post Degree Diplomas and I have a successful career - and really I'm just an idiot LOL

So, things will likely turn out okay. Just remind yourself that many kids with diabetes do go on to achieve wonderful things in spite of it all.

 

[Whirl2]

Hi sorry to hear you are finding things tough. My daughter is 6 and was diagnosed this September, we are still in honeymoon phase, though I don't find it very honeymoon as she has hypos every morning even though her insulin has been reduced alot, but we will get there. I can't offer much advise but know what you are doing for your son is amazing looking after him and it's not easy and you are doing a fantastic job, make sure you take time for yourself even if it is just an hour you have to look after you.

Also speak to your nurse about groups mine set us up for a support group with our local diabetes UK group. We have already been to a evening at a trampoline Park and they have arranged a Christmas party and a panto trip, even if you dont get talking to the parents it's nice to know for you and your son you aren't the only ones.