How has your child's diabetes affected YOU?

[Kei]

I know we're always posting about the children on here, but it would be interesting to see how we have all been affected by having a child with diabetes.

Personally, I haven't experienced the anger and resentment of the condition that I'm told others have felt. Family members and friends have far worse problems. At least this is something that can be controlled, so I accept that it has happened and just carry on, but there are niggling little things that have affected my life quite a lot.

I really shouldn't complain. F is great at doing her blood sugars, lets me do her injections without too many complaints, is willing to eat when and what I ask her to, and likes to get enough exercise. I'm a lucky mum really, but ...

- I struggle to get dinner on time, while incorporating an insulin injection 20 minutes before the meal is ready. If F decides not to co-operate, dinner can be burned or delayed a long time. This means the little ones go bonkers and start screaming, which can mean that by the time my husband gets home at 7:30 I'm tearing my hair out and all 3 kids are hysterical. Thankfully the consultant persuaded F at her last clinic that doing her injections in less than 5 minutes was important, and we've not had too many problems since, but it's always a possibility. Slowcooker dinners are my friend!

- I now HAVE to get up before 07:30 to do F's morning insulin. OK on school days, but over the Christmas holiday I was worn out and just wanted a good lie-in. No chance! I suppose this one's good for regulating my body clock though, so I shouldn't whinge. 😉

- I keep running out of ideas for healthy 20-carb snacks. 2 digestives, 3 times a day apparently isn't good enough! 🙄

Go on; have a good old grumble. I'm sure most of us have the same gripes. Or am I maybe the only one complaining? Selfish me! 😱

Kei
xx

 

[Kei]

Sounds a bit petty now I've typed it out. 🙄

 

[Northerner]

Sounds a bit petty now I've typed it out. 🙄

Absolutely not petty at all Kei! It's the day-to-day niggles that can really become wearing. I have no experience with children, but from my personal perspective (diagnosed aged 49!) I too have not felt angry or depressed about my diagnosis. Is F on two injections a day? I'm sorry I can't remember, but if this is the case that really does put extra (and unnecessary) pressure on you regarding timing of injections and with eating schedules. On MDI I can eat when I want, or not eat if I don't want, and also have the option of injecting just before or after a meal - far more flexible!

 

[Kei]

Absolutely not petty at all Kei! It's the day-to-day niggles that can really become wearing. I have no experience with children, but from my personal perspective (diagnosed aged 49!) I too have not felt angry or depressed about my diagnosis. Is F on two injections a day? I'm sorry I can't remember, but if this is the case that really does put extra (and unnecessary) pressure on you regarding timing of injections and with eating schedules. On MDI I can eat when I want, or not eat if I don't want, and also have the option of injecting just before or after a meal - far more flexible!

Thanks. 🙂

However ... I've just remembered another of my little niggles! Almost all the adults on here who are on MDI keep saying "get her changed to MDI" as a solution to everything. It might work brilliantly for adults, but to a fairly-recently-diagnosed child who hates injections, the thought of having to inject EVERY time they want to eat, instead of at two specific times during the day can be terrifying! 🙄 If we were to switch F right now, she would either start refusing her injections again, or decide she wouldn't eat - thinking that would mean she wouldn't need any injections. What works for one person, definitely doesn't work for another!

 

[Northerner]

That's a very good point Kei, and it's obviously very different for me. I was put on MDI straightaway, so haven't known any different.

 

[bev]

Not wishing to add to your niggles - but - would you be interested in going on a pump? 1 x needle every three days.
Eat only if she wants to.
Can do the bolus when she has decided how much she wanted to eat.
Can eat snacks throughout the day without trying to fit into the 20cho slot.
If she were to be ill with high levels - you can change the basals on an hourly basis to accomodate the higher levels.
You can give her insulin from a hand-held remote from the other side of the room - so she can keep playing with friends without being interrupted etc.
The family can eat when the food is ready.
Better control on a pump than on injections.

I hope i havent added to your niggles - it just seems that a pump may be the answer for a child who hates injections so much.🙂Bev


p.s. the whole family could have a lie-in at weekends and holidays too!

 

[Kei]

At the moment I think her sheer clumsiness might make a pump difficult. It's certainly an idea for later on. We'd need to know more about them though. She swims a lot, so would that be a problem? I don't know how the pump is attached/connected or whether you have to keep it on all the time?

 

[Becca]

At the moment I think her sheer clumsiness might make a pump difficult. It's certainly an idea for later on. We'd need to know more about them though. She swims a lot, so would that be a problem? I don't know how the pump is attached/connected or whether you have to keep it on all the time?

Hi

Rose swims twice a week and the pump is no problem at all. We just disconnect, test BM and treat if necessary, then reconnect and test BM when she has finished. The pump stays in a waterproof pot either in class or with me. Animas do a waterproof pump and people can swim with them on as well. I wrote a book about Rose and her pump, if you click here:

http://www.childrenwithdiabetesuk.org/index.php?page=for-parents and click on I am Rose - i wear an insulin pump, it downloads the book. It explains what a pump is etc in her own language.

HTH 🙂

 

[Kei]

Thank you, Becca! That's a lovely useful document. 🙂

 

[falcon123]

I saw this from the other side! When I was diagnosed my parents took it quite well. In reality it had little effect on the family?s lifestyle. Living on a farm we were early risers and tended to eat what is now known as a ?healthy diet?. The biggest irritation was boiling up the glass syringes and needles twice a day! For holidays they brought disposables but then too expensive for daily use. There were one or two problems when a doctor told them it was heredity like haemophilia as each tried to blame the other. I think the doctor had implied that if you knew you were a carrier you should not have children. The details are somewhat hazy now. In fact both Type I and Type II occur have occurred on both sides.

 

[sofaraway]

I assume she is on mixtard as you are having to give it 20 minutes prior to the main meals. Novomix 30, or humalog mix 25 are also mixed insulins but are given immediatly prior to eating, as they have rapid acting insulin. might be something that you could talk about with your DSN.

 

[delta]

I assume she is on mixtard as you are having to give it 20 minutes prior to the main meals. Novomix 30, or humalog mix 25 are also mixed insulins but are given immediatly prior to eating, as they have rapid acting insulin. might be something that you could talk about with your DSN.

i thought mixtard was being discontinued and replaced by nova mix

 

[Kei]

Well deduced! She's on Mixtard 30 at the moment.

 

[Gemma444]

Not wishing to add to your niggles - but - would you be interested in going on a pump? 1 x needle every three days.
Eat only if she wants to.
Can do the bolus when she has decided how much she wanted to eat.
Can eat snacks throughout the day without trying to fit into the 20cho slot.
If she were to be ill with high levels - you can change the basals on an hourly basis to accomodate the higher levels.
You can give her insulin from a hand-held remote from the other side of the room - so she can keep playing with friends without being interrupted etc.
The family can eat when the food is ready.
Better control on a pump than on injections.

I hope i havent added to your niggles - it just seems that a pump may be the answer for a child who hates injections so much.🙂Bev


p.s. the whole family could have a lie-in at weekends and holidays too!

Bev, this is my dreams for Jack....... we have a clininc appt soon and im going to moan, moan, moan about all my concerns as the 2 injections a day is not working for Jack. 2 injections is ok if it works but it doesnt for an 8 year old boy who is stubborn and wants to eat when he wants to and with me and my partner both working full time jobs the strick routine with food is very difficult to keep to. Jack is suppose to have tea at half 5. That happens sometimes but not very often. I sometimes don't get home till 5:20pm. I can't cook anything decent really in 10minutes.


Gem xxx

P.s i wish i still had lies ins...........haha

 

[Patricia]

Yes, it's the food preparation stuff! We LOVE our food, love to eat it hot, and time and again something goes wrong, even on the pump: unexpectedly high (set change? inject and leave for a while?) or low (hypo treatment, so everyone waiting)...All the weighing and measuring and the decisions about how to spread out the insulin, etc etc...

It HAS become much easier, and we do it in a kind of 'flow'. But we eat virtually all of our evening meals together, with both preparing and in the house...I would go NUTS on my own.

And yes, the 'having to get up' and 'having to stay up at night' testing scenarios. At the moment, we more or less have to do both, even on the pump...because he's nearly 14, and his growth is out of control (as it should be), and his numbers are often all over the place. We can leave the morning until 8am without much trouble though: get up and test, then snuggle down again for a while. Certainly HE doesn't then get up until 10am!

Last weekend: 7mmols on Saturday 8am I think. Had dropped nearly 4mmols one and half hours later. Sunday woke on similar number, but ROSE one and half hours later. Sigh.

Small things stack up to be big. They accumulate. And they are daily life. You have the right to moan!

xxoo