Mam to Type 1 son

[J7BLE]

Hi....my son was diagnosed with Type 1 in September and I’m still really struggling with the emotional side of it all. He’s coping so well and we are so proud of him but my heart is broken.....if I let myself I could cry all the time. I struggle every day not to think about it all the time. My husband is amazing and totally understands how I’m feeling, he is struggling too. I keep myself busy and work every day but I feel exhausted with the constant worry and stress.
I guess I’m just posting on here to ask if others feel this way too and hopefully hear that in time this might get better.....
Thank you for reading Julie

 

[HOBIE]

On a positive note J. I have been T1 since England won the world cup aged 3. A lot of hard work but have never been unemployed in my life. Insulin pumps are way forward. "A couple of pushes of buttons". 😉

 

[J7BLE]

Thank you for your positivity, it’s good to hear. Matthew is currently looking into pump options. He is “happy” with injections at the moment but his options are more limited once he is 12.
It’s an emotional rollercoaster at the moment for us, as a parent you just want you kids to be fit and healthy. We will do our utmost to make sure this happens, just all very daunting at times

 

[HOBIE]

I am pleased he has looked at Pumps. A big fella would NOT get mine off me

 

[KARNAK]

Hi Julie, welcome to the forum.🙂 You are not alone and it appears young Mathew is coping very well. Parents tend to take it harder but remember it is not an illness but a condition which can be controlled, you will as Mathew will, learn to control this condition and it will become second nature for you and all your family and friends. Please remember it is Mathews Diabetes and not yours, stay in touch with his Diabetes team and especially his DSN (Diabetic Specialist Nurse) who should be able to answer any of your concerns. If you have any concerns which cannot be answered by his DSN, please post on the forum a wealth of information is available. Take care we are here for you and Mathew.

 

[J7BLE]

Hi Julie, welcome to the forum.🙂 You are not alone and it appears young Mathew is coping very well. Parents tend to take it harder but remember it is not an illness but a condition which can be controlled, you will as Mathew will, learn to control this condition and it will become second nature for you and all your family and friends. Please remember it is Mathews Diabetes and not yours, stay in touch with his Diabetes team and especially his DSN (Diabetic Specialist Nurse) who should be able to answer any of your concerns. If you have any concerns which cannot be answered by his DSN, please post on the forum a wealth of information is available. Take care we are here for you and Mathew.

Good Mornng! Thank you for your support. Our DSN is excellent and always at the end of the phone if needed. From the very beginning it has been drummed into us that it is Matthews diabetes and he is very much involved in his food choices, ratio changes and doses. He has injected himself from day 1 for which we are so proud of him.
Your HbA1c is amazing, Matthew was 130 plus back in Sept then down to 70 end of Oct and down to 40 in Dec, he was so happy with that, as were we.
It’s a constant worry to me and as his mam I doubt that will ever change.

 

[KARNAK]

Hi again, Mathews figures are also amazing, shows great control in such a short time. I know as a parent you are bound to worry and always will but the anguish will decrease and hopefully disappear with time. Take care.🙂

 

[SB2015]

Good Mornng! Thank you for your support. Our DSN is excellent and always at the end of the phone if needed. From the very beginning it has been drummed into us that it is Matthews diabetes and he is very much involved in his food choices, ratio changes and doses. He has injected himself from day 1 for which we are so proud of him.
Your HbA1c is amazing, Matthew was 130 plus back in Sept then down to 70 end of Oct and down to 40 in Dec, he was so happy with that, as were we.
It’s a constant worry to me and as his mam I doubt that will ever change.

Well done to you both for getting the levels down. It sounds like you are beginning to get more used to this new ‘normal’ life, and as you both find a way to manage this your anguish will decrease. Keep in touch.

 

[J7BLE]

Well done to you both for getting the levels down. It sounds like you are beginning to get more used to this new ‘normal’ life, and as you both find a way to manage this your anguish will decrease. Keep in touch.

Thank you afain....I really hope my anguish will get better with time. I know it’s still early days and I’m learning to accept that this is not something I can totally control and make better which as a mam is a hard pill to swallow x

 

[HOBIE]

Did u mean AGAIN ? made me laugh.

 

[trophywench]

You madam - are acting perfectly normally for a lady in your position! Impossible though you may find this right now - it DOES honestly get better. But like most upsetting things - it simply takes Time. So - give yourself time!

It compares to a bereavement, the effect it has - and had you actually had a bereavement then you'd entirely accept being upset and bursting into tears 'for no partic reason' - wouldn't you?

All the 101 different things we now need to do that we didn't even knew existed before diagnosis - just become habits - given time! There again, it wasn't until after we came home from having a really good Sunday lunch with 10 mates we haven't seen much of for 2 years in some cases - that I said to OH - Oh blast - I forgot I was diabetic at lunchtime, I think I'd better test my blood and see what the damage is! Do you? LOL - secure in the knowledge that I wasn't about to drop dead or triple my HbA1c, cos it's only when you do that kind of thing multiple times, that you suffer long term really. If you only do it twice a year you can get away with it a bit - but there again the carb count for the huge plateful was only about 35g - lovely veges - and it did take me till halfway through this morning to get it completely right again. Most things can be solved if you use a bit of logic and don't panic!

 

[J7BLE]

Did u mean AGAIN ? made me laugh.

Ha ha...yes AGAIN....my eyes aren’t what they used to be

 

[J7BLE]

You madam - are acting perfectly normally for a lady in your position! Impossible though you may find this right now - it DOES honestly get better. But like most upsetting things - it simply takes Time. So - give yourself time!

It compares to a bereavement, the effect it has - and had you actually had a bereavement then you'd entirely accept being upset and bursting into tears 'for no partic reason' - wouldn't you?

All the 101 different things we now need to do that we didn't even knew existed before diagnosis - just become habits - given time! There again, it wasn't until after we came home from having a really good Sunday lunch with 10 mates we haven't seen much of for 2 years in some cases - that I said to OH - Oh blast - I forgot I was diabetic at lunchtime, I think I'd better test my blood and see what the damage is! Do you? LOL - secure in the knowledge that I wasn't about to drop dead or triple my HbA1c, cos it's only when you do that kind of thing multiple times, that you suffer long term really. If you only do it twice a year you can get away with it a bit - but there again the carb count for the huge plateful was only about 35g - lovely veges - and it did take me till halfway through this morning to get it completely right again. Most things can be solved if you use a bit of logic and don't panic!

That is a great story and one that made me smile....I was actually quite laid back at Christmas about things and Matthew even had a split dose for the first time for a carb loaded meal at our local Italian. I just seem to have gone backwards these last few weeks. He’s been running high over night and we are trying all different things to find out why. If he has a good even day then I’m happy but dread checking in the night to find him high!
We are going to try delaying supper for 15 mins after insulin tonight and see if that helps
Thank you so much for your kind words and advice x

 

[trophywench]

LOL - don't delay supper - jab the meal insulin 15 minutes early! LOL

He might be like me though - I use Novorapid and it gets going for me in 10 minutes - so if I hadn't already started eating it by then I'd be hypo.

That's the thing though - every single one of us is different - and every single one of us has to adapt to what their body needs. It quite often can be at odds with what the textbooks say - we are humans, not medical hypotheses or assumptions or even intelligent guesstimates !

 

[J7BLE]

LOL - don't delay supper - jab the meal insulin 15 minutes early! LOL

He might be like me though - I use Novorapid and it gets going for me in 10 minutes - so if I hadn't already started eating it by then I'd be hypo.

That's the thing though - every single one of us is different - and every single one of us has to adapt to what their body needs. It quite often can be at odds with what the textbooks say - we are humans, not medical hypotheses or assumptions or even intelligent guesstimates !

Ha ha....yes that’s what I meant....insulin 15 mins early and supper/Levemir at 9 as usual.
He was a bit high with supper (excited playing computer games I think) so added correction plus 15 mins before, he dropped to 4.2 after about 45 mins with a Libre saying falling fast so gave a jelly baby. Caught it in time and only had slight peak at about 1am which is quite normal for Matthew then back down nicely to 5.3 at breakfast. Hopefully tonight he won’t need correction and see how delay works.....but who knows eh ?!? X

 

[SB2015]

Ha ha....yes that’s what I meant....insulin 15 mins early and supper/Levemir at 9 as usual.
He was a bit high with supper (excited playing computer games I think) so added correction plus 15 mins before, he dropped to 4.2 after about 45 mins with a Libre saying falling fast so gave a jelly baby. Caught it in time and only had slight peak at about 1am which is quite normal for Matthew then back down nicely to 5.3 at breakfast. Hopefully tonight he won’t need correction and see how delay works.....but who knows eh ?!? X

That is sounding like a success. As Jenny says we are just human and things will be different for each of us, and it can be different at different times if the day. You are already working out things to change bit by bit. Glad that you have the Libre which makes checking overnight easier.

You are already sounding like you have got the hang of things, and you are only a short time into this.
Well done. Just keep at it, keep asking and keep working with Matthew.

I have just seen that there are two Family Weekender events on the DUK website. This includes events for you, for Matthew and any siblings. It could give you the chance to talk to other parents, and Matthew a chance to do a variety of activities with others who also have T1. Have a look if you think it might be of interest.

 

[J7BLE]

That is sounding like a success. As Jenny says we are just human and things will be different for each of us, and it can be different at different times if the day. You are already working out things to change bit by bit. Glad that you have the Libre which makes checking overnight easier.

You are already sounding like you have got the hang of things, and you are only a short time into this.
Well done. Just keep at it, keep asking and keep working with Matthew.

I have just seen that there are two Family Weekender events on the DUK website. This includes events for you, for Matthew and any siblings. It could give you the chance to talk to other parents, and Matthew a chance to do a variety of activities with others who also have T1. Have a look if you think it might be of interest.

Yes I’m quickly learning that no two days are the same......Matthew had a post pasta hypo tonight so another correction with supper and hopefully no spike later.
Ah thank you for that I’ll have a look on the website x

 

[SB2015]

Yes I’m quickly learning that no two days are the same......Matthew had a post pasta hypo tonight so another correction with supper and hopefully no spike later.
Ah thank you for that I’ll have a look on the website x

I find pasta is a pest.
The only solution to eating pasta that I found was to split my Bolus injection. The pasta took quite a while to change to glucose so the insulin injected with the meal got going before the pasta. My solution was to split the Bolus, and take half with the meal and the other half up to two hours later. However I All too often forgot to do the second half!

Solutions
Do what you did: extra carbs for the low that will haooen after the meal, and a correction later on for the carbs from the pasta (although for me this could be overnight which is why I gave up on it)
Or
I found alternatives to pasta: I use black bean pasta made by Explore Cuisine.
Much lower carbs and quicker action and looks like pasta
Or
I use rice where I would have used pasta
I manage rice better than pasta
Or
Courgetti (threads of ‘pasta’ made by spiralising courgettes)
Excellent in the summer when friends have a glut of courgettes, but not to everyone’s taste.

It is amazing what you get to know about the digestive process!!
I knew nothing about this before D and now I have a head full of ‘useful’ info about carbs
Garibaldi 7g, digestive 11g, ginger nut 7g, greeen beans 7g/100g, ....

 

[J7BLE]

I find pasta is a pest.
The only solution to eating pasta that I found was to split my Bolus injection. The pasta took quite a while to change to glucose so the insulin injected with the meal got going before the pasta. My solution was to split the Bolus, and take half with the meal and the other half up to two hours later. However I All too often forgot to do the second half!

Solutions
Do what you did: extra carbs for the low that will haooen after the meal, and a correction later on for the carbs from the pasta (although for me this could be overnight which is why I gave up on it)
Or
I found alternatives to pasta: I use black bean pasta made by Explore Cuisine.
Much lower carbs and quicker action and looks like pasta
Or
I use rice where I would have used pasta
I manage rice better than pasta
Or
Courgetti (threads of ‘pasta’ made by spiralising courgettes)
Excellent in the summer when friends have a glut of courgettes, but not to everyone’s taste.

It is amazing what you get to know about the digestive process!!
I knew nothing about this before D and now I have a head full of ‘useful’ info about carbs
Garibaldi 7g, digestive 11g, ginger nut 7g, greeen beans 7g/100g, ....

Yes I’ve read that loads of people have a problem with pasta. I’ve tried using 50/50 white/whole meal to see if that helps. He doesn’t always drop low after but now you’ve said that he did run high over night which was probably the pasta!!
It’s one of Matthews favourite foods and I’m really trying not stop things he likes and just trying to find solutions. I wish he would eat the veg alternatives but being 11 anything veg like is not entertained.

He had paste with his tea at 5pm then had supper at 9pm where we corrected the high due to pasta low. Do you think the pasta could still have caused the night high bearing in mind that we corrected at 9pm ???
He was a bit low at 10.30pm due to teatime correction so he did have 1 jelly baby to bring him up a bit....I’m assuming that wouldn’t cause the nighttime high as it’s short acting ??
He creeped up from about 1am and stayed high most of the night coming down slowly to 6 with breakfast.
Thank for your advice x

 

[trophywench]

Pasta spikes me 4 or 5 or 6 hours after I eat it. I really shouldn't consume more than approx. 40g carb of it at a time and I know that - so that's precisely why I don't very often have it. OK having a pump does make some things easier to set split or extended boluses for - but not this one because there needs to be a gap of a few hours between the 2 or 3 parts of the meal bolus - and pumps can't do that.

(Well maybe they will once they're completely closed loop but unlikely free on the NHS for this diabetic)