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My son has had diabities type 1 he lives with me his dad I find it so hard

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Rileylewis

New Member
Relationship to Diabetes
Type 1
Hi my son is 8 years old and his had diabities type 1 for 2 years now I don't think I've slept a full night in that time as I'm so scared I might wake up one morning and his in a hypo, it seems for every good 3 days he will have 4 bad days I feel so guilty all the time when I check him and his high and now he has no school at the minute because of corona and we got no routine in our life's it shows in his readings I feel so alone with all this just would like to know if his blood will ever get easier to manage
 
Hi, do you have a good relationship with your diabetes team?

Is he on injections or a pump? Would it help if you had a Libre?

kids with diabetes means constant change even if you have pretty good management because they’re forever growing.

When you say high what sort of numbers are you talking about. What insulins is he on and what sort of amounts. Are you comfortable carb counting?
 
Hi @Rileylewis
I’m sorry you‘re finding things tough at the moment - it is difficult when routines change, more so when the routine disappears altogether for a while.
Have you spoken to his clinic about how you’re feeling? Maybe they could take a look at things and see if there are any adjustments you could make to help, even if he;s not due to be seen just yet.

How does he monitor his bloods, does he finger prick or use LIbre? It might be worth a chat with his nurse about using libre if you don’t already as this can help as it shows you if things are trending up or down or are stable, which might help. I believe the funding process to be fairly straight forward for children.
 
How does he monitor his bloods, does he finger prick or use LIbre? It might be worth a chat with his nurse about using libre if you don’t already as this can help as it shows you if things are trending up or down or are stable, which might help. I believe the funding process to be fairly straight forward for children.

A CGM (with alarms, which might be able to send alerts to your phone) might also be possible if he's having hypos at night.
 
Hi @Rileylewis
I’m sorry you‘re finding things tough at the moment - it is difficult when routines change, more so when the routine disappears altogether for a while.
Have you spoken to his clinic about how you’re feeling? Maybe they could take a look at things and see if there are any adjustments you could make to help, even if he;s not due to be seen just yet.

How does he monitor his bloods, does he finger prick or use LIbre? It might be worth a chat with his nurse about using libre if you don’t already as this can help as it shows you if things are trending up or down or are stable, which might help. I believe the funding process to be fairly straight forward for children.
 
Hi thank you so much for your reply his actually getting libre next week where waiting for it to arrive in post I'm in regular contact with his hospital and constantly changing his ratios it does help but its his ratio seems to constantly be changing is this due to him growing I'm not sure I have a daughter as well so it's hard trying to do everything on my own I always feel tired as I hardly sleep, but hopefully libre will help things
 
Hi, do you have a good relationship with your diabetes team?

Is he on injections or a pump? Would it help if you had a Libre?

kids with diabetes means constant change even if you have pretty good management because they’re forever growing.

When you say high what sort of numbers are you talking about. What insulins is he on and what sort of amounts. Are you comfortable carb counting?
 
Hi thank you so much for your reply we have a very good relationship with hospital and there very helpful, ill be honest I don't really carb count as I've also got a daughter and it's hard to do everything on my own but do carb count when I can alough his diet doesn't change too much so normal just workout in my head his actually getting libre next week so hope this will help, he will go up to 12 most days and if he goes low in the night I always seem to give him too many carbs as he will wake up high the other day he was 25 which is terrible that is a rare occurance tho, its just the constant changing I find hard and I also have a daughter so it's busy, I just feel terrible with guilt all the time and blame myself when he goes high, does managing his blood get easier once his body stops growing??
 
My daughter is 10 (I have a 13 year old son too) so she’s not stopped growing yet and some weeks seems to eat constantly and need so much insulin. If you have periods of being 7-10 or even up to 12 you may still get a good long term result but having higher reading frequently suggests something could be tweaked.
With carb counting we have a notebook and common foods/meals are written down there so I don’t have to do a lot of maths (dominos tonight so the notebook was consulted). It really does make a difference to put the effort into the carb count if you can but I know what a juggle it can be. Do the best you can as often as you can. If you can get him at a good level before bed then that helps as it’s the longest period of the day without food.
When we change basal (because of growth spurts) we’ve been told to let it settle for a few days (she’s on tresiba so there it a lag) and then look at the ratios for breakfast and get that right, then lunch then dinner etc. Clinic will always fine tune it for us but we mostly do the changes ourselves now (diagnosed 18 months ago).
The Libre will help you to be able to see trends and hopefully help you head off swift rises and drops. Try not to get hyper aware of it though. You’re still aiming for as much time in target as possible but you don’t need to be checking all the time.
WRT sleep. Prioritising yourself will help you to be able to manage both kids during the day. Sleep and rest matter for your wellbeing. It may be worth a chat with your team’s psychologist about your concerns. We all have some nights where we worry (especially after hypos) but if it’s every night then you could do with a little bit of support.
If it helps I basically do meals by the clock. We’re getting up much later in lockdown and going to bed much later but her 3 main meals are 10am, 2pm and 6/7pm (she’s going to bed around 10pm and sometimes has a snack before bed) give or take half an hour. I enforce it as much as possible even if a meal is snacks. She has big portions and always dessert or sweets or something with lunch and dinner so she snacks less inbetween.
 
Just to second the idea of a Meals Notebook. The work putting the meals in it is repaid a hundred times over when you can simply consult it and immediately know the carbs and how much insulin is needed for a particular meal.

Start off with a few regular meals and get them in the notebook. Then gradually add more. A good pair of digital scales is invaluable. I know it might sound a hassle, but believe me, it’s fantastic to have.
 
Sorry to hear you are having such a tough time @Rileylewis

There are lots of experienced and helpful parents on the forum who can share their experiences and support.

@Sally71 and @Bronco Billy might have ideas to share too

It is really tough being a parent of a kid with diabetes and it sounds like you are trying really hard.

Hopefully with the Libre you will get a more detailed picture of what is happening overnight - does he go low overnight very often?
 
Hi @Rileylewis. From one Dad to another, you are not a failure by any stretch of the imagination! Diabetes can be a very difficult condition to manage as there are so many factors outside your control, it’s as if diabetes has a mind of its own. Your son will be growing, so this will heavily influence BG levels and control. You mentioned that his ratios are constantly changing. That tells me you are paying close attention to the management of his condition. Anyone who does that is not a failure.

The Libre will help a lot as not only will your son not need to finger prick as much, making him happier to test more frequently, you will be able to see patterns and you will be able to share the information with the hospital team. They will then be in a better position to advise you.

The unknown factor when dealing with hypos is how the body reacts of its own accord. You have to treat the hypo, but if his body realises what’s going on, it will release reserves of glucose to deal with it. This, together with the carbs you give him, can often lead to a high reading. Often, this is short lived and the reading will go down on its own. We tend not to correct if the BG goes up to around the 10 mark. In fact, a high reading after a hypo isn’t necessarily a bad thing as it allows the liver to replenish its store of spare glucose.

I have two teenagers with type 1 and while we still have surprises now and again, it has become a bit more predictable. Even at the age your son is now, you will eventually learn how he reacts in certain situations, so you will be more able to make the right decisions. One thing I would add to that is trust your instinct. Your hospital team is clearly very supportive, which is fantastic, but you are with your son all day, every day, so you may know how to deal with an issue better than them.

I know it’s easy to say and not easy to do, but you need to focus more on the many positives you do and stop feeling guilty. As parents, we never do anything that will adversely affect our children’s care. Learn from each experience, but treat it as exactly that, a learning opportunity. No-one gets it right all the time, and sometimes, diabetes does its own thing anyway. I call it ‘expert guesswork’. Your knowledge and experience tell you what to do when faced with a particular set of circumstances, so you do it. All you can do then is sit back and hope what should happen does happen. It doesn’t always work like that (last night, both of mine were in an almost permanent state of hypo, despite much glucose), but you need to accept that you have done the right thing, but diabetes didn’t play ball.

I’ve always treated my two waking up hypo as a bit of a trade-off; a 3.4 in return for a reasonable night’s sleep isn’t too bad. Highs can be dealt with and, as long as they aren’t too frequent, are unlikely to have long term consequences. It’s really important to look after yourself; if you can’t care for your children, who will? Care for the carer!
You are doing a much better job of caring for your son than you realise.
 
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