New mum to a undiagnosed (untill DKA) type 1 child

[sammeyrach89]

Sorry for the long post but I need to get this off my chest. Hi everyone on the 8th November my little boy just turned six was rushed to hospital late at night. 24 hours later I was told we nearly lost him as he had suffered a sever DKA and his body had had almost completley shut down. His veins had collapsed he had an emergency Iv and they then spent the next 36 hours collecting blood from a finger prick as they were unable to get a propper cannula in. He had become completely delirious as though he was high on god knows what and his knees and elbows had turned purple. The next day I was given the pack to read but I couldnt bring my self to read it untill the day before we came out of high dependency. It still hasn't sunk in. I am scared and overwhelmed and tired I feel the same way I did the day we first brought him home and it hit me I was responsible for keeping him alive. I live with little ones dad however he works shifts so I am basically dealing with it all on my own. We have just started carb counting like literally on day 2 and I dont know why but I have just literally broke down. Sat in the middle of my stone kitchen floor sobbing. I feel so sick .. there have been a couple of instances since coming home whereby I fed him before I gave his insuline (remembered after a few bites). I dont even know why I'm writing this because I have no question ask but I just feel so alone. My partner wasnt at the hospital and we have still not really spoke about it and I thought I was ok and I know I'm.being selfish because he is my little baby but I'm finding it all really overwhelming and I dont know what to do. I suffer with anxiety and depression as it is and I'm now on the highest dose increased upon his diagnosis but im really not strong enough and I dont know what to do

 

[Sally71]

Please don’t panic - it's a lot to learn but you can do it! You’ll manage because you have to. Don’t worry about forgetting his insulin a couple of times, at least you remembered soon afterwards and it's much better to give it to him late than not at all. Carb counting isn't so bad once you get used to it, you’ll find you soon remember the numbers for foods that he eats regularly.

Please talk to your partner, you need to work together and stay strong for your son. Do you have any other family nearby who can help out? Yes your son was extremely poorly but now you know why and have the tools to help him stay healthy, it's highly unlikely that he will ever be that poorly again. Keep in touch with your medical team, they are invaluable in the beginning, just take things one step at a time and you’ll soon get the hang of it. It does get easier, honest! My daughter was also 6 when she was diagnosed, she's 14 now and just gets on with it and it's just a normal part of life for us. Yes we still get the occasional day when we think why do we have to do this, don’t want to any more, but those don’t happen very often now.

Ask your hospital team if they can put you in touch with any other families, meet ups are not really possible right now but hopefully within a few months it may start to happen again, it's great if you can share stories with other parents and your child can prick his finger and do his injection alongside other children who are doing the same. In the meantime maybe you could at least talk to someone who has been through what you have and come out the other side.

Good luck, it feels horrible right now but will soon start to get better

 

[sammeyrach89]

Please don’t panic - it's a lot to learn but you can do it! You’ll manage because you have to. Don’t worry about forgetting his insulin a couple of times, at least you remembered soon afterwards and it's much better to give it to him late than not at all. Carb counting isn't so bad once you get used to it, you’ll find you soon remember the numbers for foods that he eats regularly.

Please talk to your partner, you need to work together and stay strong for your son. Do you have any other family nearby who can help out? Yes your son was extremely poorly but now you know why and have the tools to help him stay healthy, it's highly unlikely that he will ever be that poorly again. Keep in touch with your medical team, they are invaluable in the beginning, just take things one step at a time and you’ll soon get the hang of it. It does get easier, honest! My daughter was also 6 when she was diagnosed, she's 14 now and just gets on with it and it's just a normal part of life for us. Yes we still get the occasional day when we think why do we have to do this, don’t want to any more, but those don’t happen very often now.

Ask your hospital team if they can put you in touch with any other families, meet ups are not really possible right now but hopefully within a few months it may start to happen again, it's great if you can share stories with other parents and your child can prick his finger and do his injection alongside other children who are doing the same. In the meantime maybe you could at least talk to someone who has been through what you have and come out the other side.

Good luck, it feels horrible right now but will soon start to get better

Thankyou for your words. My mum use to have him on a friday however now shes too scared to. My dad lives next door and is trying his hardest but this make my other half feel pushed out which I havent got the mental space for right now so I feel if I accept the help itl upset him and push him away but I need the help I work almost full time myself and it just feels non stop. I thought about groups once we are back up and running more for me if anything. Ethan is coping great he was finger pricking and injecting him self 1 week after coming home I'm so proud of him it's just me who's falling apart I feel so selfish as a mum but it scares the hell out of that this is now our new life having to think constantly . Is there any support you are aware of I thought about councilling but I doubt there is any specific for parents of diabetic children so part of me thinks how will they even help if they have no understanding of what I'm going through. .. thanks for the reply btw . Xxxx

 

[Sally71]

Our hospital team have a counsellor as part of the team, specifically trained in diabetes and families. Ask whether yours has got one. Could you take your mum with you to the next hospital appointment, so that she can learn about it and maybe that will help her confidence? If your partner can't be there much because of work commitments then surely he will understand if you look somewhere else for some support, speak to him! And make sure you make time for yourself, you’ve had a hell of a shock and you need to grieve x

Oh and I’ll tag some other parents in in case anyone else has any ideas @Thebearcametoo @Bronco Billy

 

[Paulbreen]

Hey Sammyrach
I can’t image what your going through but as sally said you will manage because you have to, I was in your little mans shoes, diagnosed at 7 years old after some trauma but 40 odd years later I’m still here and still smiling. it’s a lot to take in for him and especially you, but a step at a time will work I can assure you, I’m still forgetting to take my insulin even now.
Don’t cut yourself up about it he will be fine, wait until he discovers girls and beer, then you’ll have to worry much more, I know I caused my mum plenty of lost sleep back in the day.
There is loads of great technology out there today that makes living with diabetes pretty ok these days.

 

[Bronco Billy]

Hi @sammeyrach89, welcome aboard!

Your experience at diagnosis sounds very similar to mine. Our daughter was in DKA, and we were half an hour from losing her according to the doctor who treated her in A&E. Her fingers and toes were starting to become cold, which is a sign the body is starting to shut down. That was almost 11 and a half years ago when she was 6 years old. Today, she’s a strapping (and occasionally stroppy) 17-year-old in the process of applying to university. We got through it and so will you.

Reading your posts, I think you are being harsh on yourself. You are on the steepest learning curve you have ever been on and will ever be on. You are also only a month into dealing with it. It’s natural to be overwhelmed sometimes and to make mistakes. There isn’t a parent of a type 1 child who hasn’t done both of those things. I know I have, so relax, you’re normal. You’re certainly not selfish! It’s a scary place you are in at the moment, but, although it won’t seem like it now, it will get easier. With each day that passes, you are becoming more knowledgeable and better at caring for you son, even though you probably don’t realise it.

It’s so easy to focus on the negatives, but it’s vital you remember the positives. OK, you forgot to give insulin before food, but you remembered soon after. At this stage, that’s a win! You’re testing regularly? That’s a positive. No doubt you’ve successfully dealt with high and low blood sugar levels. That doesn’t sound to me like someone who isn’t strong enough. Be encouraged by your son; if he’s coping, then great, that’s half the battle.

On this page of the Diabetes UK website, you will be able to find your nearest support group. It’s by no means exhaustive as it will only show those affiliated with Diabetes UK, but your hospital team may know of others. If you’re on Facebook, there are lots of groups there. A good one to look for is one that is linked to your local clinical network. if you search for your region’s name followed by “paediatric diabetes network” you should find it. Talking of your hospital team, I hope you have told them about your mental health, as they will help with support.

How is your other half dealing with it? From what you have said, he’s been quite quiet so far. I’m sure you are trying to involve him, which is great. When my daughter was diagnosed, I decided to be involved as much as I could because I wanted to be able to help her if there was a problem, even though my wife was a stay-at-home mum, so did the majority of the care. If he wants to talk to a fellow Dad, please encourage him to message me. He can do that by clicking on my name and using the private message option.

Take care and relax, you’re doing a great job!

 

[sammeyrach89]

Hey Sammyrach
I can’t image what your going through but as sally said you will manage because you have to, I was in your little mans shoes, diagnosed at 7 years old after some trauma but 40 odd years later I’m still here and still smiling. it’s a lot to take in for him and especially you, but a step at a time will work I can assure you, I’m still forgetting to take my insulin even now.
Don’t cut yourself up about it he will be fine, wait until he discovers girls and beer, then you’ll have to worry much more, I know I caused my mum plenty of lost sleep back in the day.
There is loads of great technology out there today that makes living with diabetes pretty ok these days.

Thankyou. Xxx

 

[sammeyrach89]

Hi @sammeyrach89, welcome aboard!

Your experience at diagnosis sounds very similar to mine. Our daughter was in DKA, and we were half an hour from losing her according to the doctor who treated her in A&E. Her fingers and toes were starting to become cold, which is a sign the body is starting to shut down. That was almost 11 and a half years ago when she was 6 years old. Today, she’s a strapping (and occasionally stroppy) 17-year-old in the process of applying to university. We got through it and so will you.

Reading your posts, I think you are being harsh on yourself. You are on the steepest learning curve you have ever been on and will ever be on. You are also only a month into dealing with it. It’s natural to be overwhelmed sometimes and to make mistakes. There isn’t a parent of a type 1 child who hasn’t done both of those things. I know I have, so relax, you’re normal. You’re certainly not selfish! It’s a scary place you are in at the moment, but, although it won’t seem like it now, it will get easier. With each day that passes, you are becoming more knowledgeable and better at caring for you son, even though you probably don’t realise it.

It’s so easy to focus on the negatives, but it’s vital you remember the positives. OK, you forgot to give insulin before food, but you remembered soon after. At this stage, that’s a win! You’re testing regularly? That’s a positive. No doubt you’ve successfully dealt with high and low blood sugar levels. That doesn’t sound to me like someone who isn’t strong enough. Be encouraged by your son; if he’s coping, then great, that’s half the battle.

On this page of the Diabetes UK website, you will be able to find your nearest support group. It’s by no means exhaustive as it will only show those affiliated with Diabetes UK, but your hospital team may know of others. If you’re on Facebook, there are lots of groups there. A good one to look for is one that is linked to your local clinical network. if you search for your region’s name followed by “paediatric diabetes network” you should find it. Talking of your hospital team, I hope you have told them about your mental health, as they will help with support.

How is your other half dealing with it? From what you have said, he’s been quite quiet so far. I’m sure you are trying to involve him, which is great. When my daughter was diagnosed, I decided to be involved as much as I could because I wanted to be able to help her if there was a problem, even though my wife was a stay-at-home mum, so did the majority of the care. If he wants to talk to a fellow Dad, please encourage him to message me. He can do that by clicking on my name and using the private message option.

Take care and relax, you’re doing a great job!

Thankyou so much this has really helped just currently dealing with second night time hypo oh the Joy's. Little mans loving haribo at midnight hahaha I will most definitely pass the message to my other half thankyou so much take care xxx

 

[Bronco Billy]

Thankyou so much this has really helped just currently dealing with second night time hypo oh the Joy's. Little mans loving haribo at midnight hahaha I will most definitely pass the message to my other half thankyou so much take care xxx

Snap! My daughter has just had a hypo, too! A 2.3 Back in the fours now though, after some juice. We won becuase we always win.

 

[sammeyrach89]

Snap! My daughter has just had a hypo, too! A 2.3 Back in the fours now though, after some juice. We won becuase we always win.

Oh luckily we havent been that low yet however we had the cold sweats last nigh had to change his pillow bless him. Do you find juice works ok? We were advised haribo or glucogel ? Hope shes ok now xxx

 

[Kaylz]

@sammeyrach89 we all have our preferred hypo treatments and what works best for one won't be the same for the next person, juice can sometimes be easier as some have trouble chewing when hypo and some will use different things depending what level they are at, try different things if you like although this would probably be best done during a day hypo than at night, so far I've used jelly babies, mini bags of drumstick squashies and currently just using Lift glucose chews, some use apple/orange juices (the small cartons), mini cans of full sugar soft drinks, fruit pastilles etc, I'm sure you'll have been advised that chocolate isn't one of the best things to use due to the fat content slowing the absorption down but yeah just try different things so he doesn't get fed up of the same thing as hypo's may be common for some time to begin with, go easy on yourself though, it isn't your fault and I'm sure you'll do a fab job of managing it and we're all here when you need a bit of support xx

 

[Sally71]

Liquids tend to work faster than solids because they go through the stomach quicker, also glucose tablets because they are glucose already so don’t need to be digested. That said, try a few things and see what works best for you. We originally used raspberry glucotabs (now called Lift) until daughter got so sick of them she could barely put them in her mouth, then switched to jelly babies until she got sick of those (jelly babies are better than most sweets because they contain glucose syrup, they are slower than pure glucose tabs though), now she favours orange Dextrose tablets, Berry glucose juice or appletise.

Liquids might also be easier for your child because they can sometimes forget how to chew when hypo, they also might find it easier to suck a straw (used to work particularly well if my daughter was low in the night, she could suck a straw without even waking up properly). You must be strict and stick to the 15 rule though - 15g carbs, wait 15 mins, test again, repeat if necessary - because it is soooooo easy to overtreat and send them high! Especially with little ones. 15g is 3 jelly babies, 3 glucose tabs, one mini can of full sugar coke or appletise. If you have any other preferred treatments then make sure you know the correct amount, I know it's so tempting to just keep shovelling sugar down them, especially if you get one of those stubborn ones that don’t come up again very quickly, but you’ll regret it later!

 

[sammeyrach89]

@sammeyrach89 we all have our preferred hypo treatments and what works best for one won't be the same for the next person, juice can sometimes be easier as some have trouble chewing when hypo and some will use different things depending what level they are at, try different things if you like although this would probably be best done during a day hypo than at night, so far I've used jelly babies, mini bags of drumstick squashies and currently just using Lift glucose chews, some use apple/orange juices (the small cartons), mini cans of full sugar soft drinks, fruit pastilles etc, I'm sure you'll have been advised that chocolate isn't one of the best things to use due to the fat content slowing the absorption down but yeah just try different things so he doesn't get fed up of the same thing as hypo's may be common for some time to begin with, go easy on yourself though, it isn't your fault and I'm sure you'll do a fab job of managing it and we're all here when you need a bit of support xx

Thanks xxxxxtake car

 

[sammeyrach89]

Liquids tend to work faster than solids because they go through the stomach quicker, also glucose tablets because they are glucose already so don’t need to be digested. That said, try a few things and see what works best for you. We originally used raspberry glucotabs (now called Lift) until daughter got so sick of them she could barely put them in her mouth, then switched to jelly babies until she got sick of those (jelly babies are better than most sweets because they contain glucose syrup, they are slower than pure glucose tabs though), now she favours orange Dextrose tablets, Berry glucose juice or appletise.

Liquids might also be easier for your child because they can sometimes forget how to chew when hypo, they also might find it easier to suck a straw (used to work particularly well if my daughter was low in the night, she could suck a straw without even waking up properly). You must be strict and stick to the 15 rule though - 15g carbs, wait 15 mins, test again, repeat if necessary - because it is soooooo easy to overtreat and send them high! Especially with little ones. 15g is 3 jelly babies, 3 glucose tabs, one mini can of full sugar coke or appletise. If you have any other preferred treatments then make sure you know the correct amount, I know it's so tempting to just keep shovelling sugar down them, especially if you get one of those stubborn ones that don’t come up again very quickly, but you’ll regret it later!

Thanks do u give a snack to stabilise then once the sugars are past 5.6. The pack we got sent home from hospital with advised once above 5.6 give a small carb snack however when the nurse was talking to us and school she didnt mention that . I have done the 2 times we have had a hypo in the night and the 1 time at school and it seemed to work but after reading this I'm questioning myself hahaha x

 

[Thebearcametoo]

Oh what a horrible time you’ve had. You had a traumatic time and need to process that. And on top of that you’re now dealing with information overload and having to get into new routines. It will take time to get used to it all and it will be like juggling cats to begin with. But you will get used to the day to day stuff.

Please do lean on your team and get some counselling for the trauma you’ve been through. And do look on this phase a grieving phase for all the ways you thought your child’s life would be (the good news is that there will be little he can’t do because of diabetes but it’s still not the easy ride you were expecting). It’s good to cry. It’s good to feel those emotions. But please don’t despair.

We are a year and half into my daughter’s diagnosis and I think after the first few months the routineness of care became ingrained and most of the time now it’s just normal. Those first few months had a lot of ups and downs though (my husband worked away a lot and I was often on my own).

The hardest thing at the beginning was not having a break as it seemed unfair to expect someone else who hadn’t had all the training take on the responsibility. For regular childcare your team can help with getting other adults up to speed - probably virtually at present (our clinics are asking that one one adult attends) but even if not in time you will get strategies in place and he will also have more of an idea of what’s usual and needs doing. Prepandemic when she went to friend’s I would just have a conversation at meal times about carbs but she did her own injections (she’s now on a pump) and she was never far away so it was all easy to change and get her home if necessary.

With hypo treatments our team prefers glucose tabs (we buy in bulk off Amazon), gluco juice (daughter hates it), lucozade sport. If using tabs we give a drink of water too as it speeds up the absorption. And yes give a snack (we tend to use crackers or milk) of around 10g carbs afterwards. Some hypos will need repeat treatment and sometimes it feels like a game of chicken as to whether you need extra support but as long as the levels stabilise even if it takes a while to come back up then just be patient. You will get to know what’s usual for your child as to how much to treat at certain levels and if you get a Libre or other CGM where you can see the speed of a drop that also helps inform treatment too.

 

[Sally71]

Thanks do u give a snack to stabilise then once the sugars are past 5.6. The pack we got sent home from hospital with advised once above 5.6 give a small carb snack however when the nurse was talking to us and school she didnt mention that . I have done the 2 times we have had a hypo in the night and the 1 time at school and it seemed to work but after reading this I'm questioning myself hahaha x

We don’t because daughter is on an insulin pump and you don’t need to then. If you’ve been told to by your hospital team then do it. I’m sure the nurse won’t mind you getting in touch with her if you need to clarify anything, ours doesn’t x

 

[KARNAK]

Welcome to the forum @sammeyrach89 so pleased you have found us. xxx

 

[MrDaibetes]

Hey Sammy and welcome to the forum. There is lots of wonderful information from both people living with diabetes on the forum and parents. Also, don't be so hard on yourself it will be a little bit overwhelming at first but I promise it gets easier.

Take a look at this it has lots of information and it is all about Children and Diabetes.

Remember don't be hard on yourself and welcome to the forum once again. Please reach out if you have questions.

 

[Bronco Billy]

Oh luckily we havent been that low yet however we had the cold sweats last nigh had to change his pillow bless him. Do you find juice works ok? We were advised haribo or glucogel ? Hope shes ok now xxx

I used juice for a couple of reasons, how low she was and the time of night. She needed the amount of sugar that was in the juice (in fact, she needed 3 cartons in the end) to bring her up from that level. Had she been 3.3 instead of 2.3, I would have used glucose tablets or similar. Haribos work fine, too You will find the treatments that work for you. We usually use glucose tablets or jelly babies. Given the time of night, I wanted to make sure she went up to a level that meant she wouldn’t go hypo again before morning. At night, we don’t correct a high number unless it’s over 10.

 

[everydayupsanddowns]

Sorry you’ve had such a rough ride with this new chapter in your family‘s life. It’s completely understandable that you found it overwhelming to begin with, bit it sounds like you are making amazing progress now.

Keep asking questions, and feel free to rant and moan here any time you need it.