very sad mummy

[jayne15]

Hi everyone I am so pleased I have found this forum, My lovely little girl was diagnosed 2 days ago and had fab support with H@H and diabetic team, on the outside we look like we are coping on the inside is a very different matter and my lovely happy go lucky 7 year old is a shell of her former self bogged down with frequent BM's and insulin injections, we are trying to act as normal as possible
but its taking over our lives as we all dread the next jab as she is so distress-I am looking for any inspiration please.

 

[Superchip]

I can't imagine your or your lovely daughters situation. But I'm sure that there are other people on these forums who have experienced the same as you.
You have definately come to the right place, there are thousands of people on this site with a staggering amount of experience.
Also I expect Daisy will be along soon with lots of information on diabetes.

Maybe you could provide,in time, some useful info on her BG levels,diet,medication etc. That would be helpful for the members to offer appropriate advice.

Keep positive, I know that is easier said than done, but it will get easier.

Best regards Roy

 

[CathyN]

Dear Jayne

My heart goes out to you. I am only type 2 and diagnosed at the age of 48! I know from a friend of mine who has a 3 year old with type 1 that this is utterly devastating and very difficult to come to terms with.

All I can say, is that this forum is a life saver - so it's great that you are here.

Plus, diabetes is manageable and dealable with even though it can sometimes feel very difficult. But at least you now know what is happening to your daughter and can be active in helping her to control her blood sugar as far as she is able.

I'm fairly confident that there are adults on here who have been diagnosed Type 1 very young - and there are parents trying to cope with their children being diagnosed type 1, and of course there is a youth forum. These are the people who will understand you best - and hopefully they will be along soon to help you and answer your questions and give you support.

It does get easier.

Take care

CathyN

 

[jayne15]

thanks guys here come the tears again :cry: I guess its better to let them flow whilst she is asleep.

 

[Superchip]

Be strong Jayne, kids can be strong and get used to things pretty quickly, it's early days yet.

You are there for her, your strength will help her enormously.

Chin up, it will become more clear as you progress with knowledge.

Sleep well, goodnight

Roy

 

[WhitbyJet]

Jayne, I am sorry I cannot help or advise, I am a type 2 diabetic but I am also a mother and so I can well imagine what you are going through right now.
As a Mum you will be wondering why your lovely, perfect daughter became ill in first place, you will question whether you have done something wrong, you will wish its you with diabetes and not her.
Jayne its a shock, but you and your little girl can learn about diabetes together, the more you understand about this disease the less fear you will have.
My younger daughter has 2 girls with type 1 diabetes in her class, they often come to our house to play and its amazing how well they are coping, how responsible they are. Now I am eat ing low carb and so is my family (although husband and children do eat more fruit than I do and they might have new potatoes with their meals but on the whole we all eat pretty much the same) and you ought to hear the squeals of delight from the girls during our low carb baking sessions, its so much fun and best of all the low carb muffins, cakes etc dont cause massive spikes in blood sugar nor do they require huge doses of insulin.
Have a look through the recipe section here for inspiration, let her choose recipes, cook together, do lots of talking and have lots of hugs and cuddles, there is a lot of help in this forum and there are some good books for children with diabetes as well.

Sending you a big hug, dont despair, it will get easier you know ((((((((((((Jayne))))))))))))

 

[jayne15]

Thanks everyone for all your kind words and support, meg took her insulin this morning and done her own blood sugar I am very proud of her. I bought her a reward chart yesterday and this seems to be helping with a trip to Claires accessories for 10 stars, we are nearly half way there, I have promised her 2 stars if she lets us inject her in her tummy later.

 

[Snodger]

She's a lucky little girl, because you appreciate how hard it is and because you are getting support from others in similar situations. Plus, she's been diagnosed at a time when the outlook for T1s is better than it's ever been, and the technology and help is better than ever before.
She's also now a member of an exclusive club - we Type 1 diabetics are a noble band, with a huge amount of transferable skills learnt from living with diabetes, and an understanding of the world which many non-diabetics take years to acquire. She will probably end up a better person for it, even if it doesn't feel like that to you now.

Some of the most sensible, compassionate, clever people I know are Type 1 diabetics, and we welcome her into our club. :wave:

 

[MaryJ]

Welcome Jayne and little one

Mary x

 

[hismom]

Hi,
if its any help we found ourselves in the same situation 3 years ago. My son was 13 at the time so maybe that was easier but of course 13 isnt an easy age anyway. It was the biggest shock we could have. I will admit that I went though a sort of mourning for the child that I had. You feel guilt for everything that your child goes through and the fact that you cant take it away from them. I felt that way for quite a while but as time goes on and you learn to handle it better, you realise that actually it isnt that bad and that your children can cope with it. My son has a certain maturity that I am so proud of. He wont hide his diabetes and wont allow anyone to mock him for it. He doesnt drink , smoke or take drugs (which most of his friends are doing one or the other). It becomes part of life and they do learn to live with it and do exactly the same activites as their peers do. He is lucky and now has an insulin pump which has changed his life dramatically. (he doesnt have the 5 injections a day but just 1 cannula change every 2 days)being just one massive change. You will worry about your daughter but to be honest I think as a parent you would have anyway even without the diabetes. She will cope with it. Make sure that her school know what to do and help her to realise what her hypo symptoms are and what to do about them. I try not to think of the negatives and focus on the positives which in turn makes my son focus less on the negatives.

 

[Dillinger]

Hi Jayne,

I'm so sorry about this it must be an awful time for you.

There is a huge learning curve to go through but as has been said there will be lots of parents on here who will help you.

My children do not have diabetes but I got Type 1 like your daughter when I was 10. To be honest it never really bothered me; it was what it was, however it must have been horrible for my parents. So if it is any consolation it is probably worse for you than for your daughter.

The injections and blood tests will become routine; and the more control your daughter has or takes the better it will be; I think we all deal with things better if we are the driving force rather than feeling we are being driven.

If one of my children were to become a Type 1 I would seriously investigate getting them on a pump; they are very advanced bits of kit and seem to be very well tolerated by children and produce excellent results.

I don't know if your daughter is at all fond of the US boy and The Jonas Brothers, but one of them is a Type 1 on a pump so if she is that might be a way in for her to accept this?

Lastly, if you, your wider family and your daughter can get to grips with this and can control it (which is eminently possible) then it means your daughter's quality of life won't be affected at all; she will be able to do everything you and she hoped. Nothing will be beyond her (except perhaps deep sea diving and being on active duty in the armed forces - 2 things that as a parent I would be very relieved that my children weren't doing! ).

Don't despair; with a little love and patience everything will be alright.

Best

Dillinger

 

[Superchip]

Excellent post hismom !
This is the sort of factual/educational response that Jayne needs.

Regards Roy

Edit: A great reply dillinger, positive thinking, especially that it is probably worse for Jayne than her daughter, kids are resilient little wotsits aren't they !

 

[phoenix]

I'm glad you've had a reply from someone with experience as a child.
On the various forums I've read lot's of posts from mothers in your situation. I've also read and admired how they have got over the first shock to coping with D as another part of their lives.
I think being able to talk to other mothers helps and there are a few on here but not that many, There is also a website that includes an email forum that I know a lot of other mothers have found helpful
http://www.childrenwithdiabetes.com/uk/

 

[noblehead]

Welcome Jayne, hope you find the help and support on this forum.

 

[hunter49]

For very sad mummy, My heart feels like it will explode because I know a little about how your feeling. My son 11 years old and has Asperger's Syndrome, a form of Autism. He looks completely normal, photographic memory. He just can't read people, so he feels different from the others. He also has sensory problems, he has always been terrified of needles. Five months ago he started getting sick and the rest you know. We were told it's type1. I didn't think I would get through those 3 days in the hospital, he pleaded with me to make them stop doing blood draws, all I did was watch the clock and get ready for the next round. I feel so stupid for feeling sorry for myself because so many mothers could just send their normal child to school and not have to worry about him all day. Please take comfort in the fact that your child will amaze you. You'll calm down and it's an old saying but it gets easier each day. I no longer dread looking at his meter. We try new foods and take it one day at a time. I cried so hard the first night they let my son sleep more than 2 hours without a test, I was outside and a woman came up and hugged me really hard, we sat and talked I found out she was there because her daughter was at the end of a long battle with cancer at the age of 10, and she was hugging me. I pray every night for her. I am going to arm myself with knowledge, ask lots of questions to help my son, the only question I'll never ask again is" why me". Hang in there.

 

[Superchip]

WOW hunter49
Heavy stuff beautifully written, a heartwarming story !
Thank you for being so open, I think that the OP Jayne will really appreciate your comments.

All the very best to you and your son,

Above all be happy Roy

Edit: Oh and welcome to the forum !

 

[jayne15]

well what an inspiring community you all are its great to hear from everyone who has had first hand experience in one way or another. thanks for all your support, we have had a lovely afternoon in the park and it was great to see my beautiful daughter belly laugh again, something we have not seen for a while because clearly she was sick, I am going to work hard at trying the tips suggested in your reply's.

 

[Spearmint]

Hi Jayne

Sorry to hear about your daughter

My daughter was diagnosed at the age of 9 and i remember the early days well!! She was fine with the blood tests but the injections were a different matter, i had to pin her down kicking and screaming to do them for the 1st 2 weeks but she did gradually get better with them once she got used to them. Took about 6 months for her to be completely comfortable with doing blood tests and injections in front of other people and out in public.
For the 1st 2 years she was doing well on a premixed insulin injected twice a day but then we started running into problems and she was switched to seperate basal and bolus insulins and 5 injections a day. Unfortunately that hasn't suited her either and after a year long wait she is starting on a pump next week.
She is now 12 and does go through phases of being fed up and down plus hormones are kicking in which is possibly responsible for a lot of her problems!
She is fine with all the practical stuff but doesn't understand the theory behind it all and just isn't interested in learning still but i am sure she will in her own time.

I certainly go through phases of feeling really down about it all as well, usually when i am having to do a lot of night testing as she is prone to night hypos or when she has persistant day time highs for no obvious reasons which don't respond to extra insulin and i will admit to having nights where i just sit and cry about it all so what you are going through is perfectly normal, unless i am just abnormal LOL

This site is great for asking questions, good luck

 

[noblehead]

well what an inspiring community you all are its great to hear from everyone who has had first hand experience in one way or another. thanks for all your support, we have had a lovely afternoon in the park and it was great to see my beautiful daughter belly laugh again, something we have not seen for a while because clearly she was sick, I am going to work hard at trying the tips suggested in your reply's.

That's great to hear Jayne, nothing better than the sound of children's laughter

 

[Blondie153]

Dear Jayne, I am writing this as the mother of a newly diagnosed 8yr old. We found out the week before she was supposed to start back to school at the end of August. I remember sitting in the hospital thinking, they have made a mistake do more tests etc. etc. but here we are 2 months later and I feel that I am half way through a degree in diabetes. Please do not feel snowed under by the amount of information and medical language that you have been hit with. You will in a very short time going to be quoting like a pro! The info you are given is very important so write it down as you will not take it all in as you are probably still in shock. I had two books reccomended to me one is the carbs and cals book and the other is a book called type 1 diabetes by Dr Ragnar Hanas. This is a massive book do not be put off, just know that you have it in your house and it is great to look it up when you need the answer to a question at 11pm and nobody is there to ask. The pain you feel will come and go and the grief you experience will come and go throughout the day. We started out on 2 injections a day and are now on 4. My daughter is injecting herself and has now stopped testing every five minutes. She is gaining more confidence in herself and through this I will gain more confidence. If you had told me I would feel more like I was in control of this situation and that I could make decisions on my own I would have checked your alcohol level! But it is true, every week it gets easier. I have spoken to a couple of parents of children who have had it for 12/16yrs and they can barely remember life before it and are totally getting on with their lives, I dream of that day. We are on a long road but we will get there because that is our job as a parent. We are meant to worry and fret and cry so do so. Nobody will judge you here so rant and ask questions none are too insignificant or silly, this place will become a real help to you. Take each day as it come and give your child an extra hug each day because you can.
M