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Falling Apart

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paulinegerrard

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Relationship to Diabetes
Parent of person with diabetes
Hi there. I am new to the forum and new to diabetes. My son was diagnosed 2 weeks ago with Type 1 diabetes, aged 4, he turned 5 the following week. I am struggling with this, just feel all over the place!!!!!! My boy is doing well, and me and my husband are due to start carb counting next week and I am terrified. Any advice welcome and Thank you 😱
 
Hi Pauline, welcome to the forum. I really feel for you, it's bad enough getting the Big D when you're a grown up, but for such a little soul.

We've lads of parents on here so I'm sure they'll be able to help you get started. In the mean time though, there's a book and app called Carbs & Cals which is really useful for working our how much carb is involved in a meal. I can highly recommend it.
 
Hi Pauline, welcome to the forum 🙂 Very sorry you have to be here, but glad that you have found us. There are lots of lovely, friendly and experienced people here who know exactly what you are going through. You're bound to feel all over the place at the moment, it really does turn things upside down and there seems to be so much to take in! It's good to hear that he is doing well. Don't be frightened of carb counting, it's really not that difficult. If you want a sneaky preview of what it's all about, have a look at the Diabetes UK guide:

https://shop.diabetes.org.uk/store/literature/information-books/carbs-count-e-book.aspx

I would also highly recommend getting a copy of Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas. It's an excellent, very well-written reference which covers just about every topic under the sun as far as Type 1 is concerned 🙂

Also, you might want to get a JDRF children's 'KIDSAC' with Rufus bear for him.

Please feel free to ask any questions you may have and we will do our best to help! 🙂

(p.s. I moved your post to a new thread so that it didn't get lost)
 
paulinegerrard said:
Hi there. I am new to the forum and new to diabetes. My son was diagnosed 2 weeks ago with Type 1 diabetes, aged 4, he turned 5 the following week. I am struggling with this, just feel all over the place!!!!!! My boy is doing well, and me and my husband are due to start carb counting next week and I am terrified. Any advice welcome and Thank you 😱
Click to expand...

Hi Pauline,
your child having diabetes is every parents nightmare (((((((((hugs))))))))
The child though soon adapts and carries on as usual.
Take one day at a time with a deep breath.
When you go to apt take a list of questions and a pen and paper as everything will be overwhelming to start with.
You will loads of horror stories about complications etc people relish telling you great Aunty flow 20 times removed had this that and the other 🙄 Ignore em as in this day and age people with diabetes can have a long happy complication free life.
Kind regards
Sue type 1 diagnosed aged 4 1/2, 49 years ago and complication free. 🙂
 
reply

Thank you for your kind words and support, I really appreciate it and thank you for the book recommendations , I will get straight on to that!!!!!
I have heard some of the "horror" stories that you mentioned......very frightening. I am trying to take one day at a time, and some days are better than others, its just I think I am over thinking things. My husband is FAB at dealing with this, was in shock at first, but is handling it really well. I tend to "panic" and it has even got to the point where when I am giving my boy his insulin, he cries and says I have hurt him, so I think he is picking up on my anxieties. I am trying, just feel that I am of no help at all. He is my baby and I feel helpless. We have a great diabetic nurse but I just don't seem to be able to "take in" what she is telling us. We will get there, we have to........feeling very overwhelmed.
 
paulinegerrard said:
Thank you for your kind words and support, I really appreciate it and thank you for the book recommendations , I will get straight on to that!!!!!
I have heard some of the "horror" stories that you mentioned......very frightening. I am trying to take one day at a time, and some days are better than others, its just I think I am over thinking things. My husband is FAB at dealing with this, was in shock at first, but is handling it really well. I tend to "panic" and it has even got to the point where when I am giving my boy his insulin, he cries and says I have hurt him, so I think he is picking up on my anxieties. I am trying, just feel that I am of no help at all. He is my baby and I feel helpless. We have a great diabetic nurse but I just don't seem to be able to "take in" what she is telling us. We will get there, we have to........feeling very overwhelmed.
Click to expand...


It's very natural to be overwhelmed, who wouldn't be :(
It's just a thought for you, have you asked your son to push the button on his insulin pen?
How about Rufus the bear http://www.jdrf.org.uk/shop/products/buy-a-rufus I so wish he was around when I was little :D

It's so hard not to but do try not to over think things 🙂
 
I was really impressed when my son wanted to get involved, and I thought it was a great sign when he asked if he could push the button on his insulin pen, but the diabetic nurse said he shouldn't do it just yet, wants me and the hubby to feel "comfortable" doing it first. He has 2 Rufus the bear, he got one in hospital and one off the diabetic nurse. He doesn't show much interest in it......as he says, its not Batman !!!!!!!
 
Hi Pauline and welcome to the forum 🙂

Sorry to hear about your little boy's diagnosis. My son was also 4 when he was diagnosed and it was an incredibly tough time. Don't be hard on yourself, you are going through a grieving process. My son at first used to scream and cry whenever he saw the injection pen, but you have to be brisk and businesslike, get the injection done, and then give him a cuddle (and hide your own emotions!). We started a little reward scheme for him called "prickle pennies" - every time he had to have a fingerprick or injection, he got a penny to go in a big piggybank, then when the piggybank was full, he'd get a trip to the toy shop to spend it. This helped him overcome the fear of needles.

What injection regimen is your son on? Will your diabetes nurse go into your son's school with you and talk to the staff about what support he will need? Do come here and ask any questions you need to.

And please be reassured that all will be well - my son is 13 now and manages his diabetes very well, takes part in all sorts of sports and doesn't let diabetes hold him back. 🙂
 
Hi Pauline

Welcome to the forum, you will get lots of help here.

It's such a shock at first isn't it. My daughter was 6 at diagnosis, that was 20 months ago. You have so much to learn and it can be very frightening! Hang in there, it does get better. You and your husband must stick together to help your son, it sounds like your husband has a good handle on things at the moment, just try to learn together and support each other. Carb counting is not so bad, it doesn't take long before you start to memorise the numbers for foods you eat regularly and don't have to look things up all the time. Try to get into a routine with testing and injecting, then before long it starts to become second nature. Try to keep calm and play it down for your son, he will pick up on your anxieties - I know that can be easier said than done sometimes though!

You will get people asking all sorts of questions like "can he eat that?" and thinking they know all about it because their Gran had type 2 - which is very different! Don't take too much notice of the know-alls, stick to what you have been taught and what you understand about your son's condition. It is very individual and what works for one person might not work for another.

Good luck, and please feel free to ask here if you are confused about anything. No question is too silly! 🙂
 
My son is currently on Novorapid....3 units at breakfast, 2 at lunch and 2 at tea. He has Levemir, 2.5 units at 5pm everyday. After the fear of being in hospital and being poked and prodded, he seemed to be taking it really well, but the last 2 days, it seems to be taking its toll on him, he says he has "had enough" of it and this scares me. He is being so brave but I know he is fed up of it. My hubby handles it well, I almost resent him for it. We also have a 6 year old who suffers with anxiety so it has hit us all so hard. The diabetes nurse came in school with us and we did a care plan which seems to be going well, he was off school for a week and so is just getting back into a routine.
 
Hi, just wanted to send u lots of virtual hugs. It's hard to take in but it will become part of daily life for you all. My little man was 3 when he was diagnosed and a horrendous shock to us all. We have good days and bad days but you will adjust. This forum has helped us loads, and will do for you too. Your little one sounds very brave and don't forget to look after yourself too.
Helen
 
Oh Pauline I really feel for you! Please don't resent your husband, he might be finding it just as hard as you, perhaps he's just better at hiding his feelings! Talk to him and try to work together. You have to go through a grieving process, everyone is different and it can take a long time for some people. I think it took me a whole year to get it out of my system properly. You will all have days when it gets on top of you and you don't want to do it any more, it's tough sometimes, but you have to grit your teeth and remember you are doing it for your son's health.

Your son must be feeling frightened and confused too, give him plenty of cuddles and little rewards when he has been good and had his jab. Talk to him too; my daughter was a little older so I can't advise exactly what to say but try to explain to him in simple words what is happening and why. We had some pretty rough times for a few months, we are on a pump and had some serious problems with the cannulas which caused much tears and trauma; eventually daughter realised that life wold be much more pleasant if we just got it over and done with as quickly as possible, and things have been much better then. We had a couple of days recently when she said she didn't want to do blood tests any more; I was feeling the same so we had a cuddle and talked about it and then carried on. Talk to your other child about what is happening too.

Above all, please don't beat yourself up! You are facing a tough challenge at the moment which you did not want or ask for. You are still in shock. It is difficult at first but it does get easier with time. Just keep working at it and you will get there, you will do it because you have to. Don't get upset if your husband seems to be coping better, can he perhaps help you?

Keep asking questions and don't worry about it if you have to ask something more than once, you have to learn at your own pace. you will get there. It sounds like you have a nice DSN so make use of her.

I hope the carb counting goes well and that you start to feel better about it soon. It feels like the end of the world at the moment but it isn't, you will learn to fit the diabetes around your life and not let it rule you. Just take one step at a time
🙂
 
paulinegerrard said:
Thank you for your kind words and support, I really appreciate it and thank you for the book recommendations , I will get straight on to that!!!!!
I have heard some of the "horror" stories that you mentioned......very frightening. I am trying to take one day at a time, and some days are better than others, its just I think I am over thinking things. My husband is FAB at dealing with this, was in shock at first, but is handling it really well. I tend to "panic" and it has even got to the point where when I am giving my boy his insulin, he cries and says I have hurt him, so I think he is picking up on my anxieties. I am trying, just feel that I am of no help at all. He is my baby and I feel helpless. We have a great diabetic nurse but I just don't seem to be able to "take in" what she is telling us. We will get there, we have to........feeling very overwhelmed.
Click to expand...

Hi Pauline, I agree 100% it is incredibly overwhelming at first, lots of emotions to handle - yourself, your sons and the rest of the family, it's a huge thing to take in and adapt to and accept. You taking a day at a time is a good way to go about it. It felt for me like there was too much to learn and respond to and a huge pressure to get on top of things and manage it well - there was a lot of guilt if I made a mistake or wasn't too sure about something as I felt responsible for the outcome on my daughter.

Like others have said, you fall into this different way of doing things and it feels easier with time, it took me a while to accept it and stop feeling resentment (especially if friends we having a whinge about a restless night or a sniffle)

My daughter is doing well, she is happy and confident, she has occasional hiccups about it and we talk, have a vent and move on. She likes to know about other kids like herself and she likes to look at books or clips on the internet with other kids using their equipment/pumps. It has not stopped her doing anything her older sister has done.

Best wishes 🙂
 
paulinegerrard said:
I was really impressed when my son wanted to get involved, and I thought it was a great sign when he asked if he could push the button on his insulin pen, but the diabetic nurse said he shouldn't do it just yet, wants me and the hubby to feel "comfortable" doing it first. He has 2 Rufus the bear, he got one in hospital and one off the diabetic nurse. He doesn't show much interest in it......as he says, its not Batman !!!!!!!
Click to expand...

Could you ask someone to make a Batman cape / mask / suit for Rufus the bear? Or inject a soft Batman toy?

Things really will get easier, so keep encouraging his dreams.
 
I can only agree with what everyone else has said...things are tough at first, but you will get to the point where dbs is just part of your lives. Taking baby steps helped me cope (dx age 41, much less brave than your little boy!) with the tsunami of information at first...and it's only natural to feel sad. Try not to beat yourself up. A BIG (((HUG))).😱
 
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