I'm a parent who's 2 year old son just been diagnosed with type 1 diabetes

[Garymurday87]

hi all ,

On Friday myself and my wife took our 2 year old boy to the doctors due to being very wet at night and passing urine a lot in the last month , we thought he had a water infection. The docs took a sample and found high levels of glucose in his wee, we was sent straight to the hospital where he was diagnosed with type 1 diabetes. Initially we was very shocked , very upset and felt like our world has just been turn right upside down. We have just spent 2 nights in hospital and have had intensive training on how to administer his medication .

He need insulin with every meal and one shot just before bed time .

We are due back to hospital next week for more education and to learn what is carb counting .

It seems so unfare on my little boy having to go through this

I just hope it's gets easier

 

[Jaylee]

Hi @Garymurday87 ,

A warm welcome to the forum..

Ask whatever questions you need. You will get full on support from parents & T1s who've experienced all aspects of this condition alike.!

Best wishes.

J>

Tagging in @daisy1

 

[Freema]

Welcome here Yes it seems so unfair
Hope you'll have a lot of help from the support and understanding from People in This forum where you can also try ask every question you will have in mind of all aspects of diabetes . Wish you that your transition will be as smooth as possible

 

[donnellysdogs]

Yes, it is unfair that any child gets T1 and it is a tough journey to go through for parents as well.

I'm now in 50's but one thing I would say is that foremost... your child is still your child foremost, not your diabetic child.

Yes, we inject and test etc and hospitals but it is important that over time that diabetes fits in to all your life... not you running around the diabetes..

It is so tough initially, yes it does get easier gradually. Take each day as it comes at the moment. Keep your strength. Apply for PIP as you will need to wake at nights and you will be managing your childs health... it isnt a disability but it does need your help for your son to be live normally.

Lots of parents help around.

Compared to when I was diagnosed, things have improved, technology and care has improved and there's the forum too!

 

[Garymurday87]

Thank you for all the messages can I ask what pip is . Is it some sort of benefit. I have quite a good job and my Mrs does ok. So financially we are okay . At the miniute I cannot see any extra costs with my boys recently diagnosed condition .

 

[catapillar]

Hi @Garymurday87 welcome to the club. Glad your boy is doing ok, well done on getting him diagnosed before he was really poorly.

There's a book called "think like a pancreas" that's a great guide to what you need to know to manage type 1.

There's an NHS course on carb counting available online, it might help to supplement what you get taught, to get you ready for that session so you know what you need to focus on - https://www.bertieonline.org.uk

I don't have any experience of diabetes and childhood, I'm the diabetic and I was diagnosed at 25. But if I had a child with diabetes I would probably strongly consider investing in a continuous glucose monitor, especially in such a little one who can't really tell you if they feel like they've got high or low blood sugar. Google dexcom, or freestyle libre, guardian connect to have a look at the options. They are quite pricey, but if there's spare cash might be worth it.

You might also want to order a JDRF kid sac - https://jdrf.org.uk/living-with-typ...eaflets/kidsac-pack-children-type-1-diabetes/ - it's got a teddy bear to inject with and info leaflets for grandparents etc.

PIP is a personal independence payment but it's only payable to people 16-64, so obviously not relevant for a 2 year old. Children under 16 with type 1 may be eligible for disability living allowance. Here's some info on eligibility - http://www.childrenwithdiabetesuk.org/benefits-and-allowances/

 

[donnellysdogs]

Thank you for all the messages can I ask what pip is . Is it some sort of benefit. I have quite a good job and my Mrs does ok. So financially we are okay . At the miniute I cannot see any extra costs with my boys recently diagnosed condition .

Yes, a benefit and it is given regardless of earnings or savings..it recognises that your child needs extra care and support.. sorry, yes PIP does apply to over 16's. The link above (thanks) gives details...

 

[Garymurday87]

Sorry to keep asking questions.i have millions ha. My boy has a nova rapid injection with every main meal and 1 injection at night which is a slow release one. Say for instance we go out for dinner . Can i give him his injection say 15 mins before his good arrives. Or do I need to do it just before his good arrives. Is there a time between giving his nova to him needed food ??

 

[Garymurday87]

Yes, a benefit and it is given regardless of earnings or savings..it recognises that your child needs extra care and support.. sorry, yes PIP does apply to over 16's. The link above (thanks) gives details...

Thanks for all your help so far. It's all rather a lot to learn and I guess I am just touching the top of the Iceberg

 

[catapillar]

Sorry to keep asking questions.i have millions ha. My boy has a nova rapid injection with every main meal and 1 injection at night which is a slow release one. Say for instance we go out for dinner . Can i give him his injection say 15 mins before his good arrives. Or do I need to do it just before his good arrives. Is there a time between giving his nova to him needed food ??

I, personally, bolus (bolus is the fast acting mealtime insulin, basal is the long acting insulin, probably lantus or levemir) about 30 minutes before eating. But I wouldn't advise leaping in with just injecting 15 minutes before eating, you would need to understand how long it takes for insulin to start working in your son, and that varies from person to person and will be affected by what he's been up to that day. If you know if takes 15 minutes for insulin to start working (from use of a CGM or extensive testing to see when blood sugar starts curving downwards prior to eating, usually advised to bre bolus by 5 min increments to test out what works) and you can guarantee food will arrive in 15 minutes the pre bolus. But in a restaurant can you guarantee food will arrive in 15 minutes or might it be busy & it takes 30 or 40 minutes, meaning blood sugar drops to hypo before you have any food. If you want to pre bolus in a restaurant, where you don't have control over when food arrives, I'd do half the bolus in advance and half when the food actually appears. That will also give you the opportunity to actually see the meal to ensure your carb counting was based on accurate assumptions.

What's the problem with just giving him a shot at the table when the meal arrives? Don't think you've got to hide his injections, if you get on with it like its no big deal no one else will think it's a big deal or anything worth noticing.

 

[donnellysdogs]

Sorry to keep asking questions.i have millions ha. My boy has a nova rapid injection with every main meal and 1 injection at night which is a slow release one. Say for instance we go out for dinner . Can i give him his injection say 15 mins before his good arrives. Or do I need to do it just before his good arrives. Is there a time between giving his nova to him needed food ??

Some parents will not give insulin to a child until after a meal is ate... especially if going out.. and not know what they may or may not eat...

For all of my meals out from diagnosis till now (early 50's) I have never given a bolus injection until I see the food when I'm out... (unless its a oucnic etc that I have prepared)...

I once bolused a lot for a one off chinese and was promptly puking everyherre immediately afterwards. Told hubby to ring 999 as I knew the huge bolus and being sick I was going to hit unconsciousness very quickly...
I was out of it before the 1st responders arrived... that injection was given when i had food on plate!! It was a very, very rare chinese and nit had one since!!

Its up to you really but I would err on the side of caution if going out for a meal with a child. My friend took her 6 yr old out this weekend and ordered a waffle and icecream (non diabetic) and when the food turned up the child dislike the look of it and wouldnt eat it.. this can happen. I prefer to go with caution but I've never even since a child been one for eating out...

Hopefully parents can answer better than me...

We are always around night or day so jyst carry on asking!!

 

[Scott-C]

Sorry to keep asking questions.

Don't be sorry about asking questions, Gary, there's normally a lot of people kicking around on this site who'll go out of their way to help out others, especially guys like you who've got a wee one to look after. There's a huge amount of collective experience tucked under the hood of this website. Fire away with questions.

It will get easier, even though it might not seem like it at the moment. There are some basic rules to learn, how much 10g of carbs raises levels, how much 1u of novorapid drops them. Great that you're team are doing a carb counting gig for you, that's a really good starting point.

I'm not going to pretend this is going to be a walk in the park for you. You can learn as much as you like about carb counting etc. etc. but T1 is kinda random and unpredictable in reality.

That maybe paints it as too gloomy, but it's not that bad. Hypos, when blood sugar goes below 4, are the main thing to pay attention to. Those are serious situations which require immediate attention, but in practice the attention is normally some sweets, and there's not a lot of kids who'll complain about that!

Best of luck, man. Even though it seems grim at the moment, the years will fly by, he'll be off to nursery, school, university, job, backpacking, and T1 will just be this thing that makes him think ahead a bit and carry sweets around with him.

 

[Garymurday87]

I, personally, bolus (bolus is the fast acting mealtime insulin, basal is the long acting insulin, probably lantus or levemir) about 30 minutes before eating. But I wouldn't advise leaping in with just injecting 15 minutes before eating, you would need to understand how long it takes for insulin to start working in your son, and that varies from person to person and will be affected by what he's been up to that day. If you know if takes 15 minutes for insulin to start working (from use of a CGM or extensive testing to see when blood sugar starts curving downwards prior to eating, usually advised to bre bolus by 5 min increments to test out what works) and you can guarantee food will arrive in 15 minutes the pre bolus. But in a restaurant can you guarantee food will arrive in 15 minutes or might it be busy & it takes 30 or 40 minutes, meaning blood sugar drops to hypo before you have any food. If you want to pre bolus in a restaurant, where you don't have control over when food arrives, I'd do half the bolus in advance and half when the food actually appears. That will also give you the opportunity to actually see the meal to ensure your carb counting was based on accurate assumptions.

What's the problem with just giving him a shot at the table when the meal arrives? Don't think you've got to hide his injections, if you get on with it like its no big deal no one else will think it's a big deal or anything worth noticing.

I can 100% guarantee I won't and will never be ashamed of giving my son injections, I might not of got my point across correctly . At the min I don't no how quickly his insulin takes to start to work. So I was saying should I give it to him 15 mins before his food arrives . But from your answer and the other people i think I will just give it him as soon as his food hits the table . Thanks again for your help

 

[donnellysdogs]

It takes time to work everything out Gary but you will.

Got to say though, well done because you are still going out for meal and preparing ahead.. that shows your understanding that diabetes lives with your lives... and thats the way it should be...

Yep, they'll be ups and downs but well done..

I take it that you have been instructed to test 2-3 hoyrs after each meal? This helps to work out whether your son needs different ratio's for breakfast, lunches, tea etc.

Hope you enjoy meal out.

 

[Garymurday87]

It takes time to work everything out Gary but you will.

Got to say though, well done because you are still going out for meal and preparing ahead.. that shows your understanding that diabetes lives with your lives... and thats the way it should be...

Yep, they'll be ups and downs but well done..

I take it that you have been instructed to test 2-3 hoyrs after each meal? This helps to work out whether your son needs different ratio's for breakfast, lunches, tea etc.

Hope you enjoy meal out.

We are testing him quite a lot a the min, we are giving him 1.5 nova (bolus) with every meal . And the slow release one just before his supper . Each time we are testing him , so meal times are like 7.20 . 12. 5 and 7. But we are also testing him around 10.30 and 3pm as we like to give him a little snack.

The first 2 weeks the doctors want myself and my wife to just worry about administering his injections and getting to terms with our little boy is now a diabetic. So we haven't started tailoring his insulin needs probably yet. At the min he is having 1 hypo every day .

Last night at 2am we tested him in his sleep and his bs was 4.8. Which I knew by morning he would be in a hypo . We tested him again at 3.30am and he was 3.8. when we carb count these hypo should be last frequent shouldn't they ?

If I knew in the middle of night he was going to go hypo , in the future would I just give him a little sip of orange when he was at 4.8 (low 4) to boost his bs so he won't go hypo in the night ?? I no when he goes under 4 we give him something high in sugar , wait 20 mins test again. If over 4 giving him some toast or a digestive biscuit if still under 4 repeat the process .

And last question this morning Han

We woke at 7 this morning and tested jacks bs which was 8 , I then gave him is morning insulin, however he didn't have his weetabix for 20 mins after his insulin was administered is this okay. Or would you try and keep everything as close as possible to each other

 

[catapillar]

We are testing him quite a lot a the min, we are giving him 1.5 nova (bolus) with every meal . And the slow release one just before his supper . Each time we are testing him , so meal times are like 7.20 . 12. 5 and 7. But we are also testing him around 10.30 and 3pm as we like to give him a little snack.

The first 2 weeks the doctors want myself and my wife to just worry about administering his injections and getting to terms with our little boy is now a diabetic. So we haven't started tailoring his insulin needs probably yet. At the min he is having 1 hypo every day .

Last night at 2am we tested him in his sleep and his bs was 4.8. Which I knew by morning he would be in a hypo . We tested him again at 3.30am and he was 3.8. when we carb count these hypo should be last frequent shouldn't they ?

If I knew in the middle of night he was going to go hypo , in the future would I just give him a little sip of orange when he was at 4.8 (low 4) to boost his bs so he won't go hypo in the night ?? I no when he goes under 4 we give him something high in sugar , wait 20 mins test again. If over 4 giving him some toast or a digestive biscuit if still under 4 repeat the process .

And last question this morning Han

We woke at 7 this morning and tested jacks bs which was 8 , I then gave him is morning insulin, however he didn't have his weetabix for 20 mins after his insulin was administered is this okay. Or would you try and keep everything as close as possible to each other

Carb counting should help with avoiding hypos. Do you know what's causing the daily hypos at the moment? Are the happening at the same kind of day?

I think if you test in the middle of the night and you "knew by morning he was going to be hypo" it would be sensible to give him a sip of juice or a biscuit whatever to avoid the hypo rather than just let him drift down to hypo and then treat it. Do you know what's causing the nighttime hypos? Is it too much basal or too much bolus with dinner?

As discussed above, the timing when insulin starts working is different for each diabetic and will probably differ for that individual depending on the circumstances. Lots of people pre bolus, that is take their bolus in advance of eating rather than with food. They determine how long in advance of eating to take their bolus by testing - usually by bringing it forward 5 minutes at a time to see how that works. Bringing it forward by 20 minutes is rather a leap into the deep end. Unless you tested to see where his blood sugar was at 20 minutes before eating no one can say whether it was ok. Obviously working out pre bolus timings for a little one is going to be more difficult, you might bolus for weatabix and the wind might change and he might decide he doesn't like weatabix anymore, I think a lot of parents with little ones will bolus after food is eaten so they know exactly how many carbs have actually made it in.

Edit: really, considering pre bolusing when you're only 4 days diagnosed and you don't know what carb counting is is probably running before you can walk. It's better to be cautious with insulin doses rather than give 20 minutes before he eats and just hope he eats what you expected he would and isn't going to hypo befor he eats because you bolused too early or after because you bolused too much.

 

[donnellysdogs]

Normally night time hypos occur after 5 hours of eating and a bolus.. so it would be the basal that needs to be lowered.

Absolutely right ref getting used to D life... its so much to take on board...

Mornings and timings for breakfast can be trialled and tailored to your son.. it is a case I'm afraid of writing down on a log book everyday timings, foods, activitys, etc and tailiring to your son. If I woke up at 8.0 and injected 20mins before breakfast I would be fine.. but it doesnt say your son will be. It would depend on whether your son has toddled round and been playing, or whether he was getting dressed, or whether you were treating him to a breakfast in bed time with mummy and daddy!!

Have you got 1/2 unit pens?

A little sip of orange juice may not be enough to stop night hypo, some children need a snack before bed without a bolus. Again, it may be dependent upon whether he has had an active day or sat in a car driving somewhere and less active before his bed time.

Best thing to do (in my opinion) is log everything initially. It maybe for example every time he sees a cousin or friends that his levels may rise (or drop). By logging every aspect initially..
ie morning spent shopping at tesco, in buggy...
or afternoon spent at friend, son playing with xx for2 hours on floor.
Or out for meal..

Etc, etc, the more notes you take now and record details, the easier it will get

 

[azure]

Hi @Garymurday87

Sorry to hear about your son's diagnosis. Let me tag @Skye's_mummy for you as she has a child of a similar age with Type 1.

Would you like me to move your thread to the Parents section for you where other parents of Type 1s will see it?

Take things slowly. The 'honeymoon period' can cause some erratic sugars and also, of course, your son is very recently diagnosed so things may still need tweaking for a while.

 

[Garymurday87]

so yesterday afternoon his cousin who is just slighly younger came round to play in the afternoon, they are more like brothers who dont go a day with out seeing each other .at he had a snack with his cousin a cheese string a the time of the snack his BS was 5.6 then at tea his bs was

Hi @Garymurday87

Sorry to hear about your son's diagnosis. Let me tag @Skye's_mummy for you as she has a child of a similar age with Type 1.

Would you like me to move your thread to the Parents section for you where other parents of Type 1s will see it?

Take things slowly. The 'honeymoon period' can cause some erratic sugars and also, of course, your son is very recently diagnosed so things may still need tweaking for a while.

thank you for your messages , please can you move it , thank you

 

[azure]

Thread moved for you @Garymurday87

I know I mentioned the erratic sugars of the 'honeymoon' above, but I just wanted to say that Type 1 is something different from many other conditions in that you can't just 'take your dose of insulin' and forget it. So many things can affect blood sugar - food, exercise, stress, lack of sleep, growth, etc - that you can do everything right but still have a 'bad' blood test result.

Think of it as a work in progress and know that you're doing ok Knowledge is power, and you've certainly read a lot. I second the recommendation of Think Like A Pancreas - it's brilliant. There's also a book about children called Type 1 Diabetes in Children and Young Adults, which is highly spoken of.