Looking for parents who struggle with your child’s diagnosis?

[Loopylou]

Anyone struggle with diagnosis of your child?

 

[rebrascora]

Hi and welcome

I think it is fair to say that we all struggle with our diabetes diagnosis and it can be really overwhelming, but I can understand that it must be doubly so when you are a parent, particularly of a young child who may struggle to alert you to problems. Certainly many of the posts we get here from parents of newly diagnosed children convey this feeling of struggling to cope, but I can assure you that things do get easier after the first few days and weeks as you learn your new routine and coping mechanisms.
How old is your child and how long have they been diagnosed. Is there anything particular that you are struggling with that people can offer practical guidance with or are you just looking for some moral support?
Hang in there! I am sure there will be some other parents along soon but if you can supply more info it will help guide their responses.

 

[Deleted member 27171]

Hi @Loopylou
Welcome to the forum. Lots of parents struggle in the early days and even at times when diabetes has become the new normal.
How long has your child been diagnosed and is there anything in particular you are finding difficult or just all of it? Diagnosis is often sudden and can be an emergency situation which is really stressful!
It can be overwhelming to begin with but it does get easier. It’s tiring, emotionally challenging and there is so much to learn but you will get there.
Can you tell us a bit about your child? How old are they, how are they adjusting, what was the lead up to their diagnosis?
I’m sorry you’ve found yourself here, but it will all be ok. We’re all here for you so please let off steam if you need to, ask questions, browse - whatever you need to do.

 

[Thebearcametoo]

Hi and welcome. We’re a year and a quarter in and the difference between now and this time last year is like chalk and cheese.

Tell us a little about your situation.

 

[Loopylou]

Thanks for your replies. My son was diagnosed August last year age 9. He’s 10 now but he doesn’t want to have the diagnosis anymore. To be honest I feel like I am grieving the life that I thought he would have had. He has a Libre which has helped. I can’t seem to get a balance. It’s fine for a few days then all crazy again. I think I am just exhausted to be honest. I am a single mum and no one else in my family or friends help. Only an hour here and there. I constantly watch the clock how long it’s been between injections, food, snacks. Iike a lot of people I am up through the night. I wake up wondering is her ok has he had a hypo I’ve missed. Well meaning people say so is it easier now.... I could actually cry when I hear that. My son also is hormonal and has decided to grow his hair. I suppose it’s all such a huge change. Maybe I am still in the initial stages of coming to terms with it.
Thanks for your stories too and for listening.

 

[Sally71]

You have to grieve, that's a normal part of the process, and it takes as long as it takes. I struggled at first, I guess everyone does, but it took me 6 months until I could cry at all, and then I’d be up and down and all over the place, and it would come in waves that some really stupid little thing would upset me, and then it wasn't until about a year after diagnosis that I really let it out properly. And then I was a total basket case for about three weeks, but after that I finally started to feel stronger and that I knew what I was doing without having to check everything with the nurses.

We saw a counsellor for a while but I’m not sure if that really helped much. She once asked me if I had accepted my daughter's diagnosis. Um, well, her body can no longer sustain itself without medical intervention, and if you take away all those little bottles in my fridge she will die, how am I ever supposed to accept that?! But you have to try not to think like that and just be grateful that we live in a time and a place where diabetes can be managed, 100 years ago it was a death sentence. And gradually those days when you feel like you're not coping become fewer and further between. We are just coming up to the 8th anniversary in a few days time, and I can honestly say that it's only in the last couple of years that it's not the first thing I think about every day and that it's finally fading into the background and just feels like a normal part of life. If that's what acceptance is then I guess I’m as close as I’ll ever get.

I'd like to think that most people get through to this point quicker than I did, I guess we are all different. It must be hard if you are on your own, can the hospital not put you in touch with some other families with type 1 children? Ours did, we meet up occasionally, the parents can have a bit of a rant and swap stories and help each other, the children can all finger prick and inject together and not be different for a while. We've done some great camping trips, pantomimes and so on. This forum is great too, whatever is bothering you there will always be someone who understands, because they have been through it and had the same problems themselves. Your real life friends try to be sympathetic but basically haven’t got a clue! One good friend came to visit us when we were still in hospital and watched me inject my daughter. She said “ooh, I don’t know how you can do that, I couldn’t!” I can’t remember what I actually said, but I was thinking “well given that the alternative is certain death, I think you'd find that you could!”

My daughter also hated it all through primary school, and I guess she still does but she seems to take it much more in her stride these days. Your son will eventually feel happier too, he is lucky to have a mum who cares so much, you'll work it all out together and support each other, and you will eventually get to a place where it doesn’t feel so bad. There are some brilliant people on this forum, keep asking questions, there's always someone to help!

 

[Callyc]

I

Thanks for your replies. My son was diagnosed August last year age 9. He’s 10 now but he doesn’t want to have the diagnosis anymore. To be honest I feel like I am grieving the life that I thought he would have had. He has a Libre which has helped. I can’t seem to get a balance. It’s fine for a few days then all crazy again. I think I am just exhausted to be honest. I am a single mum and no one else in my family or friends help. Only an hour here and there. I constantly watch the clock how long it’s been between injections, food, snacks. Iike a lot of people I am up through the night. I wake up wondering is her ok has he had a hypo I’ve missed. Well meaning people say so is it easier now.... I could actually cry when I hear that. My son also is hormonal and has decided to grow his hair. I suppose it’s all such a huge change. Maybe I am still in the initial stages of coming to terms with it.
Thanks for your stories too and for listening.

Am in same situation my daughter was diagnosed 2 mnths ago age 5 it was heartbreaking we struggle everyday she wont have the libre as she is too scared to have something on her body which would help me alot but i cant force her as it must b so hard for her to even understand what is happening, we are in range most of time by carb counting but is a absolute nightmare especially when i have 3 children to sort out as well but i know we will get there just dreading her going to school as she tends to go low at least 1/2 time a day i cant sleep tonight as her level is not going above 4 and i have even gave her chocolate im hoping this can b sorted as i think its because they changed her dinner ratio but i give her 4 u of insulin b4 bed and if she is at 4 i dont think she will b ok through night so ive fed her a snack and now monitoring her i really feel for u it is hard and alot of people dont understand what diabetes involves especially people that know nothing about it but i am lucky my partner and mum do support me as much as they can but my partner works full time so is hard with 3 kids and keeping everything in order especially when she cant just go grab a snack without injection her sisters are pretty good tho as if they want something they try wait till meal time so there sister can eat with them she doesn't really like much carb free so i try to fed her up at meal times as much as possible as she doesn't want a extra injection, really hope things get better for u x

 

[rebrascora]

Grieving is a common emotion and it is perfectly reasonable. I am sorry to hear that you don't have a partner for support and particularly with the current restrictions, it must be making you feel even more isolated with this massive extra responsibility. We are here to support you in any way we can.
Your son is at a difficult age because he is old enough to remember the life he had before the diagnosis and resent the extra faffing around which is now necessary and particularly at a time when he will be starting to want more independence.
Hopefully some of the parents of teenagers will be able to give you some pointers of how to handle things or where you can go for help.

 

[Loopylou]

Thank you for all your reply's. I am glad these are normal feelings I am having. Just feels like I am walking through mud some days. It is just like waves of emotions hitting me day after day. Some days I feel ok but it never leaves. When my son is at school I get a break (even though I get a phone call at least once sometimes three times a day). But it’s still a break From having to think about it.

I was married for many years but we separated in October. It’s been a difficult time. I think the biggest thing for me is it’s not going away and for my son this diagnosis it’s life long. The needles the bruises me calling him in from playing football to scan him. If he wants to go for a walk with kids in the street all the things he needs to take. No more I will just nip out to play a quick game of football their are always lots of plans.

Thanks for allowing me to speak I am grieving the life we would have had before diagnosis. I also have a daughter who is great with it. Although she felt guilty it wasn’t her that was diagnosed. Everyone feeling different things. Dealing with all our emotions are just so difficult sometimes.

thank you all who took the time to reply, it’s much appreciated

 

[Sally71]

Yes I think one of the hardest things is how bloody relentless it is, people see what you have to do and are suitably horrified but then they can just go home and forget about it, we have to deal with it day, night, evenings, weekends, on holiday etc etc etc.. You can't ever just say “oh I can’t be bothered with all that today, let's have a day off...”

And yes you do have to carry and awful lot of clobber everywhere and can’t be spontaneous any more. And no your life will never be the same again, you have to find a new normal.

The other thing I found really hard was finding the right balance, you want to get perfect numbers all the time but that just isn’t possible, and like our nurse said, there's no point getting perfect numbers if that's all you think about, you need to enjoy life too. I found it very difficult to learn to relax a bit and not stress over every high reading, without slipping too far into not being careful enough. The Libre helped a lot, we didn’t have that for 4 years it wasn't available when she was diagnosed and we had finger pricking only, it was quite a revelation to be able to scan and see exactly what's been going on between finger pricks!

Diabetes likes to throw curve balls at you too, just when you think you’re worked it all out something happens which you don’t understand! And you'll just get everything working perfectly for 3 days and then it will change again and you feel like you are constantly adjusting and fiddling. And yes we've done all the stupid stuff like overdosing, underdosing, forgetting to dose at all, going out for the day and then finding that we've only got 3 test strips left and forgot to bring a new pack, or we think we might be having cannula issues (we are pumping) and forgot to bring a spare one, or we've sent her to school with not enough insulin to last the day because the low cartridge alarm went off at 1.30am and she just turned it off in her sleep and was blissfully unaware that anything had happened when she got up in the morning. We've had to do emergency cannula changes at 4am, I’ve been camped out in her room for what feels like half the night when I really just want to go and have a bath and watch some trashy TV but she's low and no amount of sugar seems to be making any difference (and then two hours later it all hits her at once and she shoots up to 17...) etc etc etc.

You are not alone! 🙂

 

[stephknits]

It's a bit different for me, as my daughter is 16, diagnosed on 1st May, do coming up for3 months ago. Seems like a life time ago already! Because she is 16, it really is her diabetes to manage and I have to be careful not to intrude too much - especially as I have type 1 myself. I still feel devastated for her and worried how she will cope when she goes to college in September. She is quite an anxious person and hasn't liked talking to her friends about her diagnosis, so am not sure how she will feel with a whole bunch of new people. Luckily my daughter has accepted the libre and it has made a huge difference. Perhaps you could try bribary! For my Alice, not fingerpricking so much was a no brainer and the libre doesn't hurt when inserted.
I think what Sally says is so true, it is the relentlessness which gets you down. No day off ever.
This is a great forum, we are all here to support each other. I would like to say thank you for bringing the subject up, as it has given me a moment to think about how I feel, rather than just put a brave face on it and get on with my day

 

[Callyc]

So last night was a very different night to what we have had my daughter was at 4.6 before bed and i had to give her 4 units tresiba night time insulin so i gave her a snack sothat the insulin had something to work on during night i checked her level a hr later it was at 4.1 i was like what how has the chocolate not kicked in so i gave her 2 biscuits as well as i wasworrying she was going low then took her up to 5 a hr later, i was still worrying incase the night time insulin dropped her more so i stayed up and tested again hr later again then she was at 20 i couldn't believe it so i had to give her a correction early hours of morning to correct it machine told me to give 2 units but i was worried to give that much to her as night insulin was working still and never done this before so i gave her 1 unit and slept in her bed with her she woke up at 7.9 and it makes me think if i gave her 2 units she would have gone low, i hate this illness i wish i had it and not my daughter

 

[Thebearcametoo]

We all deal with things differently and you’ve not just had his diagnosis to deal with you’re also dealing with a divorce (one of the major traumas of adult life) and we’re in the midst of a pandemic. The cumulative effect for all these things is huge.

I have my own chronic illness and took years to come to terms with that and the work I put into that has helped me with my daughter’s diagnosis so I had a head start of sorts. We also put a lot of work into finding ways to support every family member after her diagnosis as it was difficult for everyone in different ways. It’s not something that magically gets easier with time but something that takes regular checking in IMO.
Have you spoken to his team about overnight testing? Our team have assured us at it’s not necessary for my daughter so we don’t do it. (She’s now 10.) Interrupted sleep and constant alertness are exhausting. You will burnout if you’re on your own and dealing with it all the time. With sport stuff we do it anyway. Just with some glucotabs or a snack. If it’s short periods close to home we don’t have full kit with her just some hypo treatment. If he has the Libre then hypo treatment and his scanner would work.
One thing that we found with the Libre was at it made my husband who was already anxious more anxious and more apt to feel like he needed to micro manage everything. It’s actually better for us to just be on finger pricks for now.

 

[Thebearcametoo]

So last night was a very different night to what we have had my daughter was at 4.6 before bed and i had to give her 4 units tresiba night time insulin so i gave her a snack sothat the insulin had something to work on during night i checked her level a hr later it was at 4.1 i was like what how has the chocolate not kicked in so i gave her 2 biscuits as well as i wasworrying she was going low then took her up to 5 a hr later, i was still worrying incase the night time insulin dropped her more so i stayed up and tested again hr later again then she was at 20 i couldn't believe it so i had to give her a correction early hours of morning to correct it machine told me to give 2 units but i was worried to give that much to her as night insulin was working still and never done this before so i gave her 1 unit and slept in her bed with her she woke up at 7.9 and it makes me think if i gave her 2 units she would have gone low, i hate this illness i wish i had it and not my daughter

Tresiba is slow acting so it’s not there to deal with the sugars for the food she just ate but for the background levels. If your background insulin is in the right dose it will keep her level overnight even if she goes of sleep around 4-5. It’s a good idea if below 5 to give a small amount of slow release carbs like a cracker or a small glass of milk (5-10g of carbs) but don’t be tempted to over treat as you will then need a correction dose of insulin. If you’re concerned about overnight levels then talking to your team about what level they are happy with her going to sleep at helps. They will be able to look at all of her data and have a good idea of how stable her overnight levels are.

 

[Sally71]

We were also told that night testing was not necessary because it would wake her up. But then when we were basal testing once we found out that she often went low at night, and it took ages to work out why and how to avoid it. Then when we got the Libre we discovered that she was often low for several hours overnight and it does not wake her up! So I still test at night somewhere between 1 and 3 am and if she's ok then i leave her alone. I only do the one test though, and it's much rarer now for her to go low at night so I guess we are almost at the point when I can stop. And I am aware that I will have to leave her to get on with it when she's an adult! Although at the moment I think daughter likes me to check her at night because then she knows she's safe.

I would think if you are having to test every couple of hours overnight then something is wrong, but the occasional test here and there just to make sure things are on track I can understand, I hope your medical team can help you sort it out

 

[Callyc]

Tresiba is slow acting so it’s not there to deal with the sugars for the food she just ate but for the background levels. If your background insulin is in the right dose it will keep her level overnight even if she goes of sleep around 4-5. It’s a good idea if below 5 to give a small amount of slow release carbs like a cracker or a small glass of milk (5-10g of carbs) but don’t be tempted to over treat as you will then need a correction dose of insulin. If you’re concerned about overnight levels then talking to your team about what level they are happy with her going to sleep at helps. They will be able to look at all of her data and have a good idea of how stable her overnight levels are.

Wow thats really helped i never knew that only 5-10 carbs would be ok and thought the night time insulin would effect as she drops quite alot through out night im a over worrier especially as its my daughter shes always had 4 units at night since diagnosis so im not sure if its correct or not its what ive been given thanks for advice

 

[ColinUK]

This isn’t diabetes related however my nephew (he’s an only child the only grandchild my folks will ever have) has severe allergies. He’s had them all of his life and he will have them all of his life.
At the last test he was highly allergic to:
All tree nuts
All legumes
Newsprint
Tomato
Kiwi fruit
Sesame
Raw egg
All fish
All shellfish
Avocado
Plums
Apricots
Coconut
Corn
and a bunch of other things I can’t recall right now.
He’s 18.

He goes nowhere without a bag containing at least one epipen. He can’t travel on a plane without the entire aircraft being free from all allergens so has to liaise with the airline months beforehand so that they can do their best to make his environment safe for him. He would love to travel to the Far East but has been told the prevalence of sesame oil in foods and therefore in trace amounts in the air etc would probably kill him so he can’t. He’s never held a newspaper without wearing gloves to keep the newsprint off of his skin.
Being the doting uncle I’ve taken him out to eat a number of times but that’s like a military operation. We need to check the allergens info and then speak with the chef - again this needs to be done yonks in advance of any proposed dining out or else it’s a non-starter.

Was it tough at the beginning? Of course it was.
Did everyone mourn the life we all thought he’d have? Absolutely.
As he grew up did he rebel at times? Yes he did. He even took to carrying a tiny pack of peanuts with him to threaten his parents with if he wasn’t getting his way!
Has he grown up into a “normal” teenager? Yup. He’s had his share of atrocious hangovers and broken hearts. He’s also captained his school rugby and hockey teams, ice skates competitively and has a black belt at one of the martial arts - I forget which as he switched a few times.
He’s off to uni later this year and he has to factor in his allergies when deciding where to go. He couldn’t be anywhere that would be miles from a hospital (just in case) and the accommodation had to ensure he has his own, completely private, kitchen as he cannot risk cross contamination.
This summer he was planning on travelling through Canada solo but COVID screwed that idea up.

What I’m trying to say is that he has a condition which could result in pretty guaranteed death but he’s learnt to accept that risk and adjust.

Your son will learn to cope.

 

[SB2015]

Hi @Callyc and @Loopylou

There is so much to learn and you have already heard how people have found that it has become part of a new ‘normal’ life. Your children will know no different soon as this is how it will be now. Your feelings are perfectly normal and it is a grieving process at whatever age you are diagnosed (I was 53). Also Diabetes doesn’t always behave itself so we manage those bumps on the way, but you will find a new way of managing day by day.

Has anyone mentioned the book T1 Diabetes in Children Adolescents and Young Adults by Ragnar Hanas. It is an excellent book and very clear. It is regularly update with the latest info on the ever changing tech so worth getting the latest edition.

A friend’s daughter was adamant that she was not having anything attached initially, but now has chosen to switch to a Libre and a pump. Your children will need time to adapt to each new idea, as you will and his perspective will be different from yours at this stage. Just take your time and keep talking.

We are here for you to answer questions, provide support, give space for a good rant , ...
Keep in touch.

 

[Thebearcametoo]

Wow thats really helped i never knew that only 5-10 carbs would be ok and thought the night time insulin would effect as she drops quite alot through out night im a over worrier especially as its my daughter shes always had 4 units at night since diagnosis so im not sure if its correct or not its what ive been given thanks for advice

Fast acting insulin if you’re on novorapid peaks about an hour after taking it and stays in the system for around 4 hours so once there’s been no food or insulin in the system for around 4 hours the drop or rise from then on gives you an idea if the basal is about right (it’s not perfect as basal requirements can vary for other reasons like exercise and it depends on which basal you’re using as to how flat the profile of the insulin is but it gives you an idea). If she’s dropping overnight from that 4 hour after eating point then the tresiba may need adjusting. You can do that with half units which helps. But talk to your team about basal changes as they may decide to look at other ratios or insulin sensitivity settings (if you use an expert meter) and other tweaks. Unless there’s a lot on exercise right around eating anything more than 10g of carbs will give a big rise so some insulin would be needed. Giving less than the 2 units suggested by the meter made sense in the situation you were in. Giving 1 1/2 units would have brought her into target too so there is more leeway than just all the dose or half the dose. Make records if you give a different amount of insulin to what the meter says as that can help the team to see what the difference is between the recorded data and reality.

 

[Lisa66]

Hi @Loopylou and @Callyc .

I hope you don’t mind me replying to your thread, as I’m not a parent of a child with diabetes, but thought I’d reply from a different perspective. Parents have already given you lots of wise words.

I was diagnosed in the 1970s when I was 11, so a similar age to your son. I think (maybe through rose tinted glasses) that I kind of got on with it, all the worrying left to my mum...that’s what mums do with regard to their children...diabetes or not.

I’m sure you try to keep it from him, but does your son know how stressed and worried you are? Could this have a bearing on his current feelings? I can only imagine how difficult it is not to have someone to talk through your day today decisions with regard to his diabetes. Does he feel that he has some responsibility for his condition? Ok you can go out and play for x amount of time, but here’s the reader (phone) for your Libre and here are snacks for your other pocket? I’m trusting you to scan your arm every ...however often you say. Does he chat to his mates? As hard as it is, it’s important to treat him as the same boy...who happens to have diabetes. Maybe his friends would like to chat to him but feel he doesn’t want to? It is also important for you to chat to someone too...ask DSN, they will definitely have other parents in the same position.

My parents were very much into not treating me differently (we all hate feeling different at that age) and were very keen that I joined in and wasn’t left out of anything. (Brown Owl was left in no doubt about this! 🙂). However, for many years my mum would sometimes ask if I had snacks etc, what did I have for lunch etc in front of friends...I hated this. Even now when my husband sometimes asks what my test is it annoys me. I think we like to know our loved ones are there for us,but don’t need like being nagged. It’s a tricky line.

We are mums and wired to worry for our children. My children are now in their 20s but I still want to give them advice. The trick I used / use with my son, to get the message across, whether it was at college, first few months of driving, off to a festival, was to make a joke and say I have to tell him “xyz” as it’s in paragraph 4 , chapter 9 of the mothers manual and if I don’t tell him, I’m failing in my motherly duties and won’t get the good mother’s certificate. I can see him smiling and shaking his head...but he has recently admitted it kind of works.

As others have said 100% perfection is impossible. Even non diabetic sugars can jump about a little. It can be days, weeks, months that extra bit of tweaking needs doing...it’s not getting things wrong, it’s life. Somewhere on the forum there’s a list of 42 things that can affect our sugar levels...so don’t beat yourself up. After 40+ years I’m still learning...but fingers crossed mostly getting it right. With all the latest tech it’s getting easier all the time.

There is no need to feel sad about the life your child might have had. There’s no reason for them not to have exactly the same future, maybe even a better one. Top flight professional sports, Hollywood actors, prime ministers, all sorts of professions, hobbies, pastimes....diabetes won’t stop him...may just take a few extra minutes here and there along the way.

@Callyc I understand your daughters reluctance regarding the Libre...even in my late 40s I didn’t like the thought of it, but it is so helpful. For the first couple of years a did try and hidden it a little...but then found some stickers to attach, weirdly it now doesn’t feel like a medical device and I’m quite happy for it to be on show. I wonder if this may help your daughter...I’m sporting Winnie the Pooh currently. Endless stickers available on Etsy, Amazon and elsewhere no doubt.

Anyway, what a ramble, apologies. I will be an another annoying person to say you will get there...the bumps will get smaller along this learning curve...but you will honest. Before you know it you will be here offering words of wisdom to others.
Xx