• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • Screening for type 1 diabetes: We now have a new forum section which is for parents who, after having their child screened for type 1, have received a positive result that at some stage their child will be diagnosed with type 1 diabetes. Where possible, please do offer your support and experiences of having a child diagnosed. https://forum.diabetes.org.uk/boards/forums/screening-for-type-1-community-chat.59/
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Son, 6, very recently diagnosed - Type 1

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Dainton has let me give him his breakfast insulin in his tummy and his lunch insulin in his leg. I'm so proud of him.

Northerner - Thanks for the suggestion of ice. I put some ice on his leg before his insulin injection at lunch time and he said he didn't even feel it, so I'm happy about that.
 
Forget what you think you did wrong, you never failed him you got him the treatment he needed, Looking back is to easy, how many times do we do that and say "oh but all the signs were there" not just about diabetes but in all walks of life. Fact is we deal with one thing at a time as it arises, taking a step back to look at a whole is very difficult when your in the thick of it. You sound like a great family look forward now and focus on that. I was only 19 when my daughter was diagnosed, she had been i'll for 6 weeks seeing dr's she was losing weight, it was only one sunday when she was so lethargic we called the emergency dr, he didn't want to speculate but sent us direct to the childrens ward and she was diagnosed within the hour. Very scary, but we are all still here. Al
 
Alan.tnh said:
Forget what you think you did wrong, you never failed him you got him the treatment he needed, Looking back is to easy, how many times do we do that and say "oh but all the signs were there" not just about diabetes but in all walks of life. Fact is we deal with one thing at a time as it arises, taking a step back to look at a whole is very difficult when your in the thick of it. You sound like a great family look forward now and focus on that. I was only 19 when my daughter was diagnosed, she had been i'll for 6 weeks seeing dr's she was losing weight, it was only one sunday when she was so lethargic we called the emergency dr, he didn't want to speculate but sent us direct to the childrens ward and she was diagnosed within the hour. Very scary, but we are all still here. Al
Click to expand...
You are completely right in saying the signs are obvious once you know what you're dealing. I honestly read through the booklet and for majority of the signs for ketoacidosis, I was going down the list and a little *ping* was coming into my head, ticking them off!!

I know I'm emotional at the moment but I'll get better and I want to know everything I can about it so that I can help my son to the best of my abilities x
 
Well I think you're doing a great job, well done
 
Hi Leanne

My daughter was also 6 at diagnosis, now nearly 10. It is tough at first, and a lot to learn, but it does get better - honest!!! It takes a few months though, before you really feel confident in what you are doing and don't need to check with the medics all the time.

Don't ever feel guilty - although I still do sometimes - my daughter was also drinking for England and even though I was well aware of the signs of diabetes and had a niggly feeling that she might be developing it, I completely missed that one and put it down to her enjoying apple juice too much and being a bit greedy with it! I only took her to the doctor after a family party when she was necking glasses of water faster than she would normally drink juice (she wasn't very keen on plain water and would normally have only sipped it) and then the next day she spent several hours just flopped on the settee with the telly on and couldn't even be bothered to choose what to watch.

Having spoken to other parents of T1 kids I think this is quite common, it sort of sneaks up on you and you don't realise that you need to do anything until the symptoms are really glaringly bad. Especially if you are the sort of parent who doesn't want to be neurotic and imagine the worst all the time!

Ask your medical team whether they can put you in touch with any other families, it's nice to meet others who are in the same situation, you don't feel so isolated then and can swap stories, help each other and have a bit of a rant when you need one, it's amazing how much better you feel when you realise that you aren't the only one to have experienced a particular problem! It's nice for the child too, not to feel like the odd one out any more. This forum is also great for advice or if you just want to let off steam. You are probably still in shock at the moment, it is all a bit overwhelming at first, and you do need to grieve (for the carefree life that you no longer have).

If you do get offered a pump then snap it up immediately! I was unsure about them but allowed myself to be persuaded to at least try it, and it took less than a day to realise that it would make life a lot easier. You only have to change the cannula every 2-3 days, then to do your mealtime doses you just push a few buttons, which makes it much easier for your child to eat what they want when they want. If they want 6 snacks a day instead of just 3 meals it can be done easily because you don't have to inject all the time (you still have to do the finger pricks though). You don't have to have the long-acting injection either, the pump contains short-acting only but drips teeny tiny doses in every few minutes for your background insulin. Which makes it much more finely-tuneable which should lead to more stable levels. Pumps also make it much easier to deal with things like illness and exercise. The pump itself is not huge and can easily be hidden under clothes, and they are very robust too so you don't have to worry about boisterous children damaging them!

Sorry that you have to be here but welcome to the forum, if you have any questions just ask away 🙂
 
How horrid for all of you! I agree with everything that has been said already so I'm not going to change that.

However I am going to suggest some other things LOL - but they are sort-of 'together but separate'. One is to join Diabetes UK - they do information days, outings and holidays for kids and their parents - with or without siblings and VERY well organised, so well organised that nobody actually feels 'organised' LOL where ALL of you can and will learn a LOT!! - and Two is to join JDRF (Juvenile Diabetes Research Foundation) which only deals in Type 1 and although originating in USA has a large UK presence and JDRF and DUK actually work together when eg lobbying Parliament to get stuff agreed for equal and FAIR treatment for all D kiddies in all UK schools - they also organise and support families too. Both brilliant organisations.
 
I can second the holiday idea we went on one when my daughter was 12 fantastic learning opportunity for all.
 
Hi Leanne.

Welcome to the forum. I do not post much as am pretty busy with one type 1 daughter and two other non diabetic daughters. But I had to reply to your post as my experience seems so similar to yours so if I can offer any ideas, I'm happy too. I'm so glad you've already had good advice from people here on the forum.

Our daughter was diagnosed with type 1 last December two days before her 7th birthday ( and Rufus the diabetes bear joined us in her birthday day celebrations in hospital ..) it's a difficult diagnosis for the parents of one so young and everything does feel like a fog at the beginning but I can assure you that the shock of it all does subside. I recall someone saying to me shortly after her diagnosis that eventually the multiple insulin injection regime and the carb counting would become "our new normal" and I recall thinking they just didn't understand, but in fact it's true.

Give it a term of his being back at school and you will have absorbed so much information about your son's carb and insulin intake, his pattern of blood sugar rise and fall and about the paraphernalia which you need to take around with you to get your lives back to normal, that you will feel less panicky and emotional every day. You do need to be supremely organised but that comes with practice (thankfully, as that was my biggest fear - forgetting the insulin bag or hypo snacks - now seems like second nature).

Two things have helped me immensely. First, after getting used to one lady at school doing her insulin injections and blood tests, we were told that that lady was to leave for a term. The news came at the half term break, 10 weeks after diagnosis. My daughter was so upset about the prospect of someone new injecting her at school that over the half term break she learned to test and inject herself. Well, what a turn around. She is only 7 and I am so proud of her. Prior to that she had experienced massive anger and tantrums and I now think it was largely because people were always taking a needle to her, which she experienced as something of an assault on her body. Being in control of the injection pen gave her an enormous sense of control over her diabetes which is empowering for her and she is much happier and more independent. The Novo pen Echo which we have is easy for her to handle ( as opposed to Lantus Solostar for the glargine night time injection which is harder, and I still do for her).

You may think your son is too young but bear it in mind, perhaps for in 6 months to a year from now. I think you said your son helped you with the testing, which means he's wanting to be involved in it, which is great. You could also involve him in understanding how many carbs there are in his food and working out his insulin dose. We have fun with the maths aspect of it, which has raised her mathematical abilities hugely!

If I recall, you are on Novorapid three times a day and glargine / lantus longer lasting once a day? Make sure you get novo rapid pen fills in 3 ml cartridges rather than the disposal pens as the pen which goes with the refills is a half unit pen with - vital for these youngsters who are so sensitive to insulin especially in their honeymoon period.

The second thing is that when you are ready and if it works for you, try to ease away from testing in the night. We realised early on that our daughter became a crazed beast when woken for testing in the night and I was a wreck through high emotions, fear and lack of sleep. She tended to go low or "hypo" in the night so her night time target was raised to and remains 10. Her glargine is given at 8 pm and provided she goes to bed at approx 9 - 12 mol, her body naturally lowers itself and she wakes up perfect, usually at 5/6 mmol. You will find your own balance but your own health and well being is as important as good glucose control and a reasonable night's sleep is essential for you all! Also, a goal of "good" blood sugars for your son is arguably better than a goal of " perfect " blood sugars; the latter, in my short four month experience is not a sustainable target.

However ultimately what works for one set of parents may not work for another. You should feel free to seek everyone's advice and then disregard if doesn't work for you! You will begin to trust your own instincts about your son's levels sooner than you realise! Hope that helps, good luck and please feel free to get back in touch if it helps!
 
Hi Leanne
No advice to give you I'm afraid but wanted to let you know that my 10 yo daughter was diagnosed late Wednesday evening/Thursday morning after going into DKA, also overseen by the GP.
I am also feeling incredibly overwhelmed by this new situation we find ourselves in but have had so much support from this group.
 
Hi!
My son is 9 and was diagnosed a fortnight ago and I feel exactly how you do. I put on a brave face around Riley yet when I'm in bed or in the bath I let it all out and feel so down about it all. Riley is doing well as it sounds like your son is. He is doing his own injections and only seems to need me to work out the carb total! He does get down every now and then but overall I think he's coping better than I am! Keep your chin up and remember you're not alone 🙂 xx
 
My son was diagnosed at 4 and i felt like a terrible failure for a while after that, no amount of reassurance to the contrary would make me think otherwise.

But take a minute to look at your son. He is on the mend, and probably feeling better every day. In less than a week he's adapted to a pretty major life change (and yes, he'll have wobbles, but who wouldn't?). He's probably doing the same stuff he was doing before diagnosis, and will continue to do so. He is brave, and doing amazingly well - and raising a little kid with all of those qualities is something you should be proud of, rather than focusing on missing the signs.

If i had a pound for every parent of little kids i've explained the symptoms to who have then asked if i could test their child (just say no...) i'd be self funding a cgm by now! :D Most of the early signs can be attributed to lots of things from a growth spurt to a UTI and it isn't until they're all presenting that alarm bells ring and you did look for help then, so you did everything right.

Finally, i also recommend the family days, your son will have a ball and it's good to connect with local families.
 
Welcome to the forum. Good luck with your son. Keep learning every day & it is hard but worth it. (from someone who has been T1 for a long time now. (dark ages 😉)
 
Leanne-618 said:
Hi Everyone,

So this will be quite a story but I'll get there eventually:-

My son who is 6 (born Sep '09) has always wet the bed, always worn a pull up for bed and could wee at night anywhere between once - 5 times. Having tried to get him out of pull ups, I decided to take it up with the school nurse who then referred me to the continence clinic.

We got an appt in late Feb and I was told to chart down how many drinks he has in a day, how often he visits the toilet, etc. This was to be done for two weeks. I soon began to notice that his drinking was more than I thought it was but carried on charting it. His teacher also pointed out that he was visiting the toilet more frequent and so it began!!

Speed up a bit, I went back to clinic after two weeks and was given desmopressin for him. Once the tablet is taken at night there's no drinking for 8 hours. I then mentioned I would like him tested for diabetes as the amount of bed wetting was unreal (now a night change of pull-ups, two used a night, both full and bed soaking every morning!) and also his thirst was quite excessive.

So I've been to docs (18 Mar) and he has also agreed to test him, gives me a tube for urine sample and tells me to book blood test. His blood test gets booked for Thursday 31 March and that's that!

Now I thought I'd hand in his urine sample in around time of blood test however come Wednesday 23 March my son develops an ear infection, so I kill two birds with one stone and take him along for that and get doc to test his urine. ***This is where everything went in fast forward for me***

Doc tested his urine, full of ketones (really dark red), some protein and sugar. Then does his blood sugar which is 22. We got told to go straight into hospital as a matter of urgency (I really expected his urine to be fine and doctor to say everything was normal, so this was a massive shock).

Lots of tests done at hospital and turns out he has Type 1 diabetes. Had I not taken him for bed wetting and taken him for his ear on Wednesday the nurse said come this weekend he would have more than likely been rushed in seriously ill.

The consultant said my sons blood sugars must have been creeping up for a few months and in the last couple of weeks I've noticed his thirst and excessive trips to toilet and weight loss, that's when his blood sugars have been really getting too high.

So we're back home, my first day yesterday of giving insulin and doing bloods all day. He's on one shot of glargine and 3 shots of novo rapid. He's doing ok at letting me inject him but if I'm honest, I'm positive in front of him and when I get a chance to be alone I sob my heart out!

I know I will get there, I just wish it was me and not him. I feel like he's a pin cushion and hope that feeling will pass. It's also been a massive shock for myself, my son and my whole family.

His blood sugars are still quite varied, still quite high but I'm in touch with our DSN every day and shes changing his doses to get him down to a more normal level before teaching me about carbs.

If you've read this far , thank you very much. It's good to be able to get it all off my chest. If I've confused you anywhere, ask me a question and I'll reply. Any advice, or even just support at the moment will do wonders for me. I'm also trying to think of ways I can support my son more. He's really very bright and understands everything I'm doing but gets very scared when I'm doing his insulin injections, which is obviously normal at this point I'd imagine.

Anyway, I'll stop there and thanks for reading. I'm looking forward to being part of this community xx
Click to expand...
Leanne-618 said:
Hi Everyone,

So this will be quite a story but I'll get there eventually:-

My son who is 6 (born Sep '09) has always wet the bed, always worn a pull up for bed and could wee at night anywhere between once - 5 times. Having tried to get him out of pull ups, I decided to take it up with the school nurse who then referred me to the continence clinic.

We got an appt in late Feb and I was told to chart down how many drinks he has in a day, how often he visits the toilet, etc. This was to be done for two weeks. I soon began to notice that his drinking was more than I thought it was but carried on charting it. His teacher also pointed out that he was visiting the toilet more frequent and so it began!!

Speed up a bit, I went back to clinic after two weeks and was given desmopressin for him. Once the tablet is taken at night there's no drinking for 8 hours. I then mentioned I would like him tested for diabetes as the amount of bed wetting was unreal (now a night change of pull-ups, two used a night, both full and bed soaking every morning!) and also his thirst was quite excessive.

So I've been to docs (18 Mar) and he has also agreed to test him, gives me a tube for urine sample and tells me to book blood test. His blood test gets booked for Thursday 31 March and that's that!

Now I thought I'd hand in his urine sample in around time of blood test however come Wednesday 23 March my son develops an ear infection, so I kill two birds with one stone and take him along for that and get doc to test his urine. ***This is where everything went in fast forward for me***

Doc tested his urine, full of ketones (really dark red), some protein and sugar. Then does his blood sugar which is 22. We got told to go straight into hospital as a matter of urgency (I really expected his urine to be fine and doctor to say everything was normal, so this was a massive shock).

Lots of tests done at hospital and turns out he has Type 1 diabetes. Had I not taken him for bed wetting and taken him for his ear on Wednesday the nurse said come this weekend he would have more than likely been rushed in seriously ill.

The consultant said my sons blood sugars must have been creeping up for a few months and in the last couple of weeks I've noticed his thirst and excessive trips to toilet and weight loss, that's when his blood sugars have been really getting too high.

So we're back home, my first day yesterday of giving insulin and doing bloods all day. He's on one shot of glargine and 3 shots of novo rapid. He's doing ok at letting me inject him but if I'm honest, I'm positive in front of him and when I get a chance to be alone I sob my heart out!

I know I will get there, I just wish it was me and not him. I feel like he's a pin cushion and hope that feeling will pass. It's also been a massive shock for myself, my son and my whole family.

His blood sugars are still quite varied, still quite high but I'm in touch with our DSN every day and shes changing his doses to get him down to a more normal level before teaching me about carbs.

If you've read this far , thank you very much. It's good to be able to get it all off my chest. If I've confused you anywhere, ask me a question and I'll reply. Any advice, or even just support at the moment will do wonders for me. I'm also trying to think of ways I can support my son more. He's really very bright and understands everything I'm doing but gets very scared when I'm doing his insulin injections, which is obviously normal at this point I'd imagine.

Anyway, I'll stop there and thanks for reading. I'm looking forward to being part of this community xx
Click to expand...
Hi Leanne,
My son is 9 and was diagnosed in Jan. Other than a couple right at the start he hasbeen self-injecting and doing very well. At the moment he is a bit fed up with it all but what can we do... Keep strong. Life is a journey. Pom bears and cheetos are good little carb snacks and Tesco malt biscuits are a nice light biscuit too, fairly low in sugar too.
It is huge trying to manage it all. Give yourself credit. It is a journey. We are waiting for a biopsy for coeliac now so we may have yet ano th er change in store.
Good luck to you all.
 
Polareclipse said:
Hi Leanne,
My son is 9 and was diagnosed in Jan. Other than a couple right at the start he hasbeen self-injecting and doing very well. At the moment he is a bit fed up with it all but what can we do... Keep strong. Life is a journey. Pom bears and cheetos are good little carb snacks and Tesco malt biscuits are a nice light biscuit too, fairly low in sugar too.
It is huge trying to manage it all. Give yourself credit. It is a journey. We are waiting for a biopsy for coeliac now so we may have yet ano th er change in store.
Good luck to you all.
Click to expand...
Welcome Polarclipse. Good luck with things Leanne.
 
Leanne-618 said:
Hi Everyone,

So this will be quite a story but I'll get there eventually:-

My son who is 6 (born Sep '09) has always wet the bed, always worn a pull up for bed and could wee at night anywhere between once - 5 times. Having tried to get him out of pull ups, I decided to take it up with the school nurse who then referred me to the continence clinic.

We got an appt in late Feb and I was told to chart down how many drinks he has in a day, how often he visits the toilet, etc. This was to be done for two weeks. I soon began to notice that his drinking was more than I thought it was but carried on charting it. His teacher also pointed out that he was visiting the toilet more frequent and so it began!!

Speed up a bit, I went back to clinic after two weeks and was given desmopressin for him. Once the tablet is taken at night there's no drinking for 8 hours. I then mentioned I would like him tested for diabetes as the amount of bed wetting was unreal (now a night change of pull-ups, two used a night, both full and bed soaking every morning!) and also his thirst was quite excessive.

So I've been to docs (18 Mar) and he has also agreed to test him, gives me a tube for urine sample and tells me to book blood test. His blood test gets booked for Thursday 31 March and that's that!

Now I thought I'd hand in his urine sample in around time of blood test however come Wednesday 23 March my son develops an ear infection, so I kill two birds with one stone and take him along for that and get doc to test his urine. ***This is where everything went in fast forward for me***

Doc tested his urine, full of ketones (really dark red), some protein and sugar. Then does his blood sugar which is 22. We got told to go straight into hospital as a matter of urgency (I really expected his urine to be fine and doctor to say everything was normal, so this was a massive shock).

Lots of tests done at hospital and turns out he has Type 1 diabetes. Had I not taken him for bed wetting and taken him for his ear on Wednesday the nurse said come this weekend he would have more than likely been rushed in seriously ill.

The consultant said my sons blood sugars must have been creeping up for a few months and in the last couple of weeks I've noticed his thirst and excessive trips to toilet and weight loss, that's when his blood sugars have been really getting too high.

So we're back home, my first day yesterday of giving insulin and doing bloods all day. He's on one shot of glargine and 3 shots of novo rapid. He's doing ok at letting me inject him but if I'm honest, I'm positive in front of him and when I get a chance to be alone I sob my heart out!

I know I will get there, I just wish it was me and not him. I feel like he's a pin cushion and hope that feeling will pass. It's also been a massive shock for myself, my son and my whole family.

His blood sugars are still quite varied, still quite high but I'm in touch with our DSN every day and shes changing his doses to get him down to a more normal level before teaching me about carbs.

If you've read this far , thank you very much. It's good to be able to get it all off my chest. If I've confused you anywhere, ask me a question and I'll reply. Any advice, or even just support at the moment will do wonders for me. I'm also trying to think of ways I can support my son more. He's really very bright and understands everything I'm doing but gets very scared when I'm doing his insulin injections, which is obviously normal at this point I'd imagine.

Anyway, I'll stop there and thanks for reading. I'm looking forward to being part of this community xx
Click to expand...
 
Your not the only one...my son started drinking loads and going to the loo excessively... then the bed wetting.. diagnosed on Thursday...Day 5 for us now...i'm still shocked...
 
Hi Leanne and all, I am feeling exactly the same. My 5 year old daughter was rushed into hospital on Monday and it came as a complete shock that she has T1, I thought she had a water infection too. I cried lots too the first few days but now I manage to hold it all in until I'm in the shower or bed when I can hear my husband snoring! I'm still feeling so overwhelmed, not really knowing what I'm doing and haven't a clue about carb counting yet, we are just taking it a day at a time. Today we had a breakthrough with her doing her own finger pricking! To think 2 days ago she was screaming the hospital down about it! Her insulin injections are still a struggle for her and us. Her nurse has been amazing, ringing and texting me all the time, even on her day off. Next step is trying to get her back to school which she is very anxious about as am I. X
 
It will be well worth you getting a meeting organised between you the school and the DSN. There are lots of things to sort out and it will all become manageable. You and your daughter are already doing very well, and she is already doing her own finger prick test. The injection hurts a lot less human that.

Things tend to be a bit wobbly at the start as her pancreas might have a few remaining beta cells who decide to start playing agin without any reason and chucking out some insulin. So don't worry if things are a bit up and down at the start.

It sounds as if you have a brilliant Diabetes Specialist Nurse and they will be used to getting children back to school and doing their normal activities.

DUK produce a pack just for parents and for schools with pupils who have T1. Just phone DUK and ask for one for yourself and school. Lots of helpful advice and ideas. There is also a care line dedicated to parents as well as a section on here for you. So lots of help available when you are ready to ask the next question, and there will be loads.
 
SB2015 said:
It will be well worth you getting a meeting organised between you the school and the DSN. There are lots of things to sort out and it will all become manageable. You and your daughter are already doing very well, and she is already doing her own finger prick test. The injection hurts a lot less human that.

Things tend to be a bit wobbly at the start as her pancreas might have a few remaining beta cells who decide to start playing agin without any reason and chucking out some insulin. So don't worry if things are a bit up and down at the start.

It sounds as if you have a brilliant Diabetes Specialist Nurse and they will be used to getting children back to school and doing their normal activities.

DUK produce a pack just for parents and for schools with pupils who have T1. Just phone DUK and ask for one for yourself and school. Lots of helpful advice and ideas. There is also a care line dedicated to parents as well as a section on here for you. So lots of help available when you are ready to ask the next question, and there will be loads.
Click to expand...

Thank you, We have a meeting with her school and the DSN tomorrow afternoon, we are all feeling anxious!
 
They will be wanting to get things as normal as possible for your daughter, and your DSN will be very used to deadline with many schools as they will know what issues to raise with the school. They are there to support you. I hope that it goes well and they can answer any concerns that you have.

Keep asking for help as your daughter settles back in. As a volunteer speaker I go into schools and do lessons with classes to help them and their teachers/TAs understand what it means for a child to have T1. There are no doubt speakers in your area who can do the same.
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top