My Child has Type 1 please help

[kellymedkelly]

I am very new to all this and just need some advice from parents on how to cope with all this, my 8 year old daughter was told she had Type 1 last week and I have been on the emotional roller coaster ever since thinking what did I do wrong, why my little girl.
I am scared of letting her eat anything with sugar in just incase she becomes very ill!!!!
I live in Wareham in Dorset and could do with some support from another parent to talk about my concerns and help me deal with this, I am struggling to say the least.

 

[margie]

Hi Kelly and welcome to the forum - sorry that you are struggling so much and remember you did not I repeat you did not do anything wrong.

You will find a lot of parents at

http://www.childrenwithdiabetesuk.org/

they have a mailing list and you may find someone in your area - who you can talk to.

Speak with your GP and daughters DSN and ask them for more help in coming to terms with things and also to give you some proper information on diet, meal planning etc. It sounds very much as if you have been left to your own devices.

Diabetes UK have a careline which you may find helpful

http://www.diabetes.org.uk/How_we_help/Careline/

 

[Robster65]

Hi kelly. Welcome 🙂

Excellent advice from Margie.

Your daughter needn't avoid all sugars/carbs as long as it is matched by insulin.
Assuming she is on fixed doses of insulin at set times, you need to ensure she has the correct (ish) amount of carbs with her meals/snacks. If you check her blood sugar as often as you feel comfortable (I check about 7 times a day) then you will be able to determine how stable her BG is at any one time.

If she wants sweets, they can be eaten after a starchy meal (if you can aim for low or medium GI) then it will slow down the action of the refined sugars in the sweets. But all carbs, whether sugars or other types, need insulin to process them.

As Margie says, you should have access to a dietician and better support than you're getting. Hopefully we can fill in some of the gaps for you in the meantime.🙂

Rob

 

[Steff]

Kelly hi and welcome, you have done a good thing joining this forum theres a fantastic bunch of parents on here who will help you where they can,so please dont hesitate to ask anything at anytime xx

 

[ruthelliot]

Hi Kelly,
Again first thing that needs to be said is you did nothing wrong - in fact you must have done everything right - you got your daughter the help she needed and got a diagnosis. Secondly you found this place! I strongly recommend you read the post by Adrienne at the top of the patents section - it has a lot of info which will be hard to take in just now but you can go back and re- read. You'll soon find yourself swamped with moral support and practical help here. What has happened is so hard to deal with and there are folk here at various 'stages' if you like from newly diagnosed to old veterans who been dealing with this at times very trying condition for a lifetime! It absolutely will get easier. You need a good support team though and folk here can help a lot - the key I think is in educating yourself as much as possible and being able to have faith in your healthcare team. What insulin regime is your daughter on just now? You will over the coming weeks have many questions so don't be afraid to keep posting. You will continue to feel overwhelmed - at times I still do 3 yrs down the line but just believe it will get easier.
Ruth x
Sorry for any typos - typing on a phone with dumpy wee fingers!!

 

[kellymedkelly]

Many thanks for your advice as this is still early days we have not yet seen the dietician this is booked for Wednesday, my daughters sugar levels have been high around 17-26 so still not controlled and we need to ring the hospital around 3 times a day to get a correction dose, it is all very confusing and stressful, I hate sending her to school and won't let her go any where without me at the moment, she loves her food so I find it hard when I say the word NO and she gets very upset, I try to expalin it is to make sure she does not get poorly but it is still very upsetting.

It is good to have a site like this just to speak to other people.

 

[Northerner]

I am very new to all this and just need some advice from parents on how to cope with all this, my 8 year old daughter was told she had Type 1 last week and I have been on the emotional roller coaster ever since thinking what did I do wrong, why my little girl.
I am scared of letting her eat anything with sugar in just incase she becomes very ill!!!!
I live in Wareham in Dorset and could do with some support from another parent to talk about my concerns and help me deal with this, I am struggling to say the least.

Hi Kelly, welcome to the forum 🙂 You didn't do anything wrong, nothing to do with Type 1 diabetes is anyone's fault, I'm afraid it just happens to some people and no-one yet knows exactly why. I was diagnosed aged 49 with no family history and it came right out of the blue - it can happen to anyone at any age.

There are lots of good links in the Useful links thread - have a look in particular at the JDRF links and I would highly recommend the book Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas, it is brilliant and full of practically everything you will need to know. For thise things it doesn't cover, you now have us! So please don't be afraid to ask any questions - nothing is considered 'silly'. 🙂

There is a lot to learn, but hopefully with your team's help and ours you will soon become familiar with things. Something else you may find encouraging is that we have members here who have lived happy, successful lives with diabetes for many decades - it can be controlled, so try to stay positive 🙂

 

[Adrienne]

Hey Kelly sorry you have to be hear.

There are a couple of other newly diagnosed on the Children with Diabetes List. I really really urge you to join there for the moment. The support you will get from other mums who all have kids with diabetes is amazing.

This forum is fantastic as well but it sounds like you need some mums as the emotions are very different than if you have diabetes yourself compared to your child having it.

www.childrenwithdiabetesuk.org

Please send me a private message or email if you want to chat or anything. My daughter is 11 years old, nearly 12 and she has been type 1 all that time so I know your emotions but am much further down the line that I can support you.

On the CWD email list there will be people from near you who you could meet up with, that is so important for you as well as your daughter.

Don't disappear, keep talking, it will be your lifeline to be here and on CWD.

Are you on fb? We have a closed, private group on there as well.

 

[Adrienne]

Many thanks for your advice as this is still early days we have not yet seen the dietician this is booked for Wednesday, my daughters sugar levels have been high around 17-26 so still not controlled and we need to ring the hospital around 3 times a day to get a correction dose, it is all very confusing and stressful, I hate sending her to school and won't let her go any where without me at the moment, she loves her food so I find it hard when I say the word NO and she gets very upset, I try to expalin it is to make sure she does not get poorly but it is still very upsetting.

It is good to have a site like this just to speak to other people.

This will all change. You need to give this time, you will be in a bubble for a while and you need to be ok with being in that bubble and just live day to day concentrating on your daughter (and yourself). Its so hard at the beginning but as you learn more and gain knowledge and experience it will be second nature. Your daughter will amaze you with her resilience, these kids are awesome you know. Soon you won't have to say no, no food is banned, you just have to learn what food really does and it takes time and patience and you will both come through this and out the bubble and you will be stronger for it. Just live day to day, hour to hour infact, its easier.

Ask any question at all. No question is ever a silly question

 

[Martin-Parent]

Hi Kelly,

Welcome to the forum, it really is a good place to get advice and it really is good to find that you are not alone. My son was diagnosed just over a month ago so we are still going through the very early life changing stages. My son is only 21 months old so it is slightly different to you, but the change in lifestyle is still there.

It is very early days for you yet. The mist didn't start to clear for at least 3 weeks for us and it was only then that we could see how the insuline worked in ralation to the food. In effect the insulin is administered to replace that missing from the body so appart from very sugary foods, you should be fine with most things. We find that we are a lot more carb aware now than we ever have been as it is the carbs as well as sugar which makes a difference.

Make sure you get lots of support from your local diabetes nurse as we wouldn't be able to cope without them. They are on the end of the phone when ever we need and pop round twice a week.

I wont lie as it is a life changing event, but with proper care, there is no reason why your daughter wont live a perfectly normal and healthy life. Just look at some of the famous people who have type 1 like Steve Redgrave plus lots more!

Keep at it as I promise that it will get easier as the dust starts to settle, and don't forget that we are here to help whenever we can.

 

[MeanMom]

Hi Kelly

Sorry to hear your news but keep asking questions on here and Childrenwithdiabetes site (if you join) there is usually someone about 🙂

Do you go to Poole Hospital? It sounds like you do from what you are saying - they are actually very good, especially in the early days, but I know they are one DSN short at the moment The dietitian only works part time so that will be why you haven't seen her yet. We had to phone every meal time too to start with, it's how they like you to do it, so don't think you are being 'over the top'

Good luck on Wednesday, if it is Poole then they will make sure you are happy before you leave, but ask them lots of questions if you need to, I did (and still do!)
Have to do school run now but will be back on later if I can.
X

 

[kellymedkelly]

Hi Kelly

Sorry to hear your news but keep asking questions on here and Childrenwithdiabetes site (if you join) there is usually someone about 🙂

Do you go to Poole Hospital? It sounds like you do from what you are saying - they are actually very good, especially in the early days, but I know they are one DSN short at the moment The dietitian only works part time so that will be why you haven't seen her yet. We had to phone every meal time too to start with, it's how they like you to do it, so don't think you are being 'over the top'

Good luck on Wednesday, if it is Poole then they will make sure you are happy before you leave, but ask them lots of questions if you need to, I did (and still do!)
Have to do school run now but will be back on later if I can.
X

Hi Yes we are under Poole hospital and to be fair they have been great, I wake up every day hoping it was all just a horrible dream but then bang it hits me, When I wake up the first thing I do is go and check on Chloe to make sure she is OK is this normal behaviour???? I feel like this is starting to take control of me and I am becoming obsessive.
Everyone has been great on here and I will look at the other sites too so thank you very much it great to have all this support.

 

[Adrienne]

Hi Yes we are under Poole hospital and to be fair they have been great, I wake up every day hoping it was all just a horrible dream but then bang it hits me, When I wake up the first thing I do is go and check on Chloe to make sure she is OK is this normal behaviour???? I feel like this is starting to take control of me and I am becoming obsessive.
Everyone has been great on here and I will look at the other sites too so thank you very much it great to have all this support.

Yep very normal Kelly. Many parents test overnight. I always prod Jessica in the morning and we are 11 years down the line.

I think for a while you will need to become obsessive and it will be very over powering but maybe that needs to happen whilst you learn lots. You will have lots of info thrown at you and you need to be absorbing it all so yes embrace the 'obsessiveness'. Actually I don't think that is the right word to use as it makes people sound neurotic and have a screw loose when in fact you are just being mum and protecting your child.

You are being very normal in your reaction to all this.

 

[Monica]

Hi Kelly

First and foremost - you have done nothing wrong at all, it's not your fault and it's not Chloe's fault.
I'm glad to hear that you're getting good support from the hospital.
We are almost 5 years down the line with D. Carol was 10 and we had the same struggle with not allowing her to eat whenever she wanted to. I'm a member of CWD (children with diabetes) too.

I always check on Carol before I go to bed too and if her readings aren't to my liking during the evening I will go and test her in the night. Yesterday evening at around 8.30pm she was 4, had something to eat, but didn't test before lights out. So when I went to bed I tested her just to make sure she's ok. She didn't like it, but tough..... she should have tested before lights out.

I hope we will see you on here lots more 🙂