Newbie here

[Telle88]

Hi I'm new to the forum. I'm mum to 4 year old identical twin boys who have both been diagnosed with type 1 in the last 12 months. R was diagnosed in November 2019 and L was diagnosed 6 weeks later in January 2020.

 

[Ralph-YK]

Welcome to the forum Telle. There's some other parents on here, along with a mix of T1, T2 and T3c.

 

[Telle88]

Welcome to the forum Telle. There's some other parents on here, along with a mix of T1, T2 and T3c.

Hi thanks for your reply I will look into the parents threads as soon as I get 5 minutes to sit down

 

[everydayupsanddowns]

Oh my goodness what a whirlwind you have been through as a family @Telle88 😱

I’ll tag-in some of our regular parent posters who may have some ideas and experiences to share @Bronco Billy @Thebearcametoo @Sally71 @stephknits

How have you been finding things?

What sort of relatjonship do they have? Are they close? Do you think it will help them as they go through life to have each other to rely on?

 

[Thebearcametoo]

Hi and welcome. What a year! Here to support you as well as give you any info that would be helpful.

 

[Telle88]

Oh my goodness what a whirlwind you have been through as a family @Telle88 😱

I’ll tag-in some of our regular parent posters who may have some ideas and experiences to share @Bronco Billy @Thebearcametoo @Sally71 @stephknits

How have you been finding things?

What sort of relatjonship do they have? Are they close? Do you think it will help them as they go through life to have each other to rely on?

Sorry for such a late reply but I'm awake after a hypo alert for Logan (L) so thought since I'm awake now and waiting for his BG to rise I'll respond as best as I can in half asleep mode
How it started was basically seeing symptoms in Ryder (R) of extreme weight loss (he was literally skin and bone), excessive thirst and bed wetting. I told my husband that I thought something wasn't right and he put it down to growth spurts but I couldn't shake the voice in my head saying diabetes, as I'd been in the gp waiting room so many times with premature babies/toddlers that I'd seen every poster on the walls so against my husband's advice I made an appointment with the gp, explained my concerns and her reply was i think you're being overly cautious but if it will set your mind at rest we'll book him in for a blood test and urine sample and see what that gives us. I returned a urine sample the next day and I hadn't even reached the end of the street when I got a call from a different gp asking me to come back right away as they had tested the sample and wanted to double check. The gp and a nurse did a finger prick test which showed up as 25 point something so he said it definitely looks like diabetes we're going to transfer you to hospital for confirmation. We were there within the hour and luckily bypassed a&e, got a diagnosis and was only allowed to leave hospital once we were confident enough to do injections on our own. We were home after 5 days, I took a no nonsense approach to it. The doctors, consultants and nurses were amazed at how easily I could inject my son and not be upset or teary as other parents had been, my reaction was simply its something he needs that right now I have to provide, if I'm scared to do it he won't trust me, if I'm confident and get it done he'll know he's safe. The first few times he'd try punching and kicking but he got used to it. Logan actually felt left out so when he was diagnosed by an out of hours go he was on cloud 9 because he was the same as his brother. I'm not going to lie, in some ways its really really hard dealing with having 2 of them to inject but their resilience to it amazes me every day (even when they try confusing me saying they've already had they're injections and its the others turn). Sometimes I do get overwhelmed and have a cry asking my husband why they have to have gone through so much in their little lives and why God is punishing our family (we've had a lot go on in the last 2 years with other family members as well as other health issues with the boys, also I'm not religious but do wonder sometimes) but I'm just happy they're happy even when they're fighting ☺ the boys are the best of friends but can also be worst of enemies when they want. They have no other siblings but I think the "twin bond" is there even more after diagnosis. Sometimes when 1 has a dip I'll give him glucose gel as a quick pick up and the other sits waiting for his share thinking he needs it as well. They're on cgm now which I find brilliant, no finger pricking etc which they also love because of no sore fingers! It also scared me at first because they were having hypos a lot in the middle of the night which I wouldn't have known about with just finger pricking and the nurse said that they may have been having hypos in the night beforehand and their bodies would have had to find a way out of it naturally. They also have zero hypo awareness, every symptom that was described to me was just typical for a childs temperament they're age so I'd only know of a hypo when doing a finger prick even though we've been doing this for almost a year, sometimes I still feel quite new to it or unsure of what I'm doing. I don't have anyone around me that can understand what the boys are going through and even though some friends ask i know it blows their mind or they get bored or confused but I don't hold it against them its nobody's fault its just life sometimes and we just power through like we have from the day they were born (with little sleep )

 

[everydayupsanddowns]

Wow! Thank you so much for sharing your story. And well done for trusting your instincts.

Just shows how important the 4Ts campaign is - such simple signs to look for yet both the GP surgery and your husband thought you might be overreacting.

Hope that having the 'hive mind' of the forum, with hundreds of experienced members, and many parents of CWD to compare experiences with will really help you 🙂

Overnight hypos are a real worry aren't they. Hope L's BGs came back up smoothly.

Frequent overnight hypos are often a signal that insulin needs are changing (this can happen frequently for any age of T1, but especially in childhood). It might be worth asking your clinic about basal insulin adjustment advice. The adult way to check it is to skip a meal and see what happens when only basal is active, but this can be trickier with young uns (though sugar free jelly might see them through!).

This page outlines the theory, which you might e able to adapt for your circumstances somehow?

Basal insulins « Diabetes Support Information Exchange

www.diabetes-support.org.uk

 

[Telle88]

Wow! Thank you so much for sharing your story. And well done for trusting your instincts.

Just shows how important the 4Ts campaign is - such simple signs to look for yet both the GP surgery and your husband thought you might be overreacting.

Hope that having the 'hive mind' of the forum, with hundreds of experienced members, and many parents of CWD to compare experiences with will really help you 🙂

Overnight hypos are a real worry aren't they. Hope L's BGs came back up smoothly.

Frequent overnight hypos are often a signal that insulin needs are changing (this can happen frequently for any age of T1, but especially in childhood). It might be worth asking your clinic about basal insulin adjustment advice. The adult way to check it is to skip a meal and see what happens when only basal is active, but this can be trickier with young uns (though sugar free jelly might see them through!).

This page outlines the theory, which you might e able to adapt for your circumstances somehow?

Basal insulins « Diabetes Support Information Exchange

www.diabetes-support.org.uk

Thank you. Their basal insulin is always changing, they seem to be in between 4.5 and 5 units. 4.5 doesn't seem like enough but 5 is too much and we get the hypos. I can't even understand where last nights hypo came from he just plummeted. I've tried them on sugar free jelly and I must have the only kids that don't like jelly! They've never liked sweets, but take after me for their love of chocolate and cakes. I'm lucky that they love salad and vegetables. My friends can't believe how they will happily eat a chicken salad wrap without tantrums or compromising

 

[Thebearcametoo]

Have your team offered a pump? They’re more work in some ways but so much easier to control things like night time basal when you’re struggling to get the balance otherwise.

 

[Telle88]

Have your team offered a pump? They’re more work in some ways but so much easier to control things like night time basal when you’re struggling to get the balance otherwise.

The team brought up the subject of a pump a few weeks ago, they didn't go into too much detail with it as they didn't want to overwhelm me and they said just take some time to think about it and we can go into further detail at our clinic appointment which is next week. I'm open to trying it but we need a lot more information before we do it because we were pushed on to cgm so fast with not a great amount of background information beforehand and we like to be armed with enough information that we understand it. I do think we'll try it as they're BGs are up and down like yoyos, breakfast is the worst for highs

 

[Thebearcametoo]

Breakfast highs should be made better by a ratio change. They’ll look at that at clinic (changes it basal and carb ratios will be ongoing as kids grow and their needs change). Here they do a pump info session so you can play around with each pump and see which might be the best for you. Even if you decide you want pumps it will be a while before you get your hands on them so don’t worry about not knowing enough. They will support you and there are some good YouTube videos of different users talking about pumps which we found helpful. There’s no rush. But having started on one recently it has helped a lot with keeping her in target more and eased out some of the peaks and troughs (we’re using dexcom (self funded) and a tslim).

 

[trophywench]

In the past, @Telle88, pumps did not integrate with CGMs and adjust insulin doses accordingly automatically, but some of the newest ones now, do - but still only to a certain extent. As far as I'm aware none of them deliver bolus insulin as yet. Hence they are not yet an automatic artificial pancreas by any means - and none of them are foolproof anyway. Never have been and never can be - YET!!

Us lot were all told by medics they thought there would probably be a cure found in the next 10 years but here we still are ........

Pumps like jabs and BG meters or anything else manually operated by humans - are still only as good as the person operating them.

Be guided by your medical team and ask, ask, ASK !!!!! Importantly - they are there to care for you and your husband in all of these things just as much as they are for the twins, because you are the ones who have to do it all - so make sure you use them fully.

Who looks after your twins' diabetes? YOU do!!

 

[Telle88]

Have your team offered a pump? They’re more work in some ways but so much easier to control things like night time basal when you’re struggling to get the balance otherwise.

The team brought up the subject of a pump a few weeks ago, they didn't go into too much detail with it as they didn't want to overwhelm me and they said just take some time to think about it and we can go into further detail at our clinic appointment which is next week. I'm open to trying it but we need a lot more information before we do it because we were pushed on to cgm so fast with not a great amount of background information beforehand and we like to be armed with enough information that we understand it. I do think we'll try it as they're BGs are up and down like yoyos, breakfast is the worst for highs

Breakfast highs should be made better by a ratio change. They’ll look at that at clinic (changes it basal and carb ratios will be ongoing as kids grow and their needs change). Here they do a pump info session so you can play around with each pump and see which might be the best for you. Even if you decide you want pumps it will be a while before you get your hands on them so don’t worry about not knowing enough. They will support you and there are some good YouTube videos of different users talking about pumps which we found helpful. There’s no rush. But having started on one recently it has helped a lot with keeping her in target more and eased out some of the peaks and troughs (we’re using dexcom (self funded) and a tslim).

Their breakfast ratio at the minute is 1:8 so its quite low already and they are obsessed with toast at the moment so I found the lowest carb wholemeal bread possible but it makes no difference. Thank you for the info, I'll look into later tonight when the boys are asleep and I get quiet time

In the past, @Telle88, pumps did not integrate with CGMs and adjust insulin doses accordingly automatically, but some of the newest ones now, do - but still only to a certain extent. As far as I'm aware none of them deliver bolus insulin as yet. Hence they are not yet an automatic artificial pancreas by any means - and none of them are foolproof anyway. Never have been and never can be - YET!!

Us lot were all told by medics they thought there would probably be a cure found in the next 10 years but here we still are ........

Pumps like jabs and BG meters or anything else manually operated by humans - are still only as good as the person operating them.

Be guided by your medical team and ask, ask, ASK !!!!! Importantly - they are there to care for you and your husband in all of these things just as much as they are for the twins, because you are the ones who have to do it all - so make sure you use them fully.

Who looks after your twins' diabetes? YOU do!!

The team we have are great. When it came to carb counting I was terrified but they explained it to me and within 2 weeks of diagnosis I was carb counting and no longer on fixed doses. My husband isn't convinced by the technology of it all but once he asks his questions he tends to come round to things. Everyone always says to me oh well there could be a cure by the time they're 16 etc, as much as I'd like to believe that I'm not pinning hopes on something that hasn't happened yet

 

[everydayupsanddowns]

Everyone always says to me oh well there could be a cure by the time they're 16 etc,

Reminds me of a good T1 friend who has a t-shirt for diabetes events entitled ‘relax the cure is only 10 years away (c)1979’ when his family were first told that.

 

[trophywench]

Can't agree with that, it would have always been by 1982 so I hope they're not too disappointed it taking an extra 3 years?