very sad mummy

Lenasmummy

Newbie
Messages
3
Oh Kellie
My heart broke reading your story . As I stand here making lunch , scales at the ready , calculating carbs it all gets me down even a year on :(
I feel so sorry for you and your little girl , you are still in shock and them to receive more blows .
If anyone lives in or near Sheffield where I am , I'm happy to get together with the children ?
Big hug
Noorea x
 

Hali

Newbie
Messages
3
Hello sad mummy,

I was diagnosed type 1, 20 years ago when I was 9 years old. Diabetes is a very emotional disease because hormones can affect sugar levels, you have to get used to injecting multiple times a day, see specialists and worry about complications later in life. I am currently on a pump because at one point my doctors required me to take 6 to 8 injections a day. In my 20 years I have experienced everything from major hypos where I passed out to keitoasidosis. One day I was sick, passed out in my car, flipped it and went into shock, releasing my body's glucagon storage.
I would be happy to help/listen if you would like someone to talk to about your daughter. [mod edit: personal contact details should not be posted http://www.diabetes.co.uk/diabetes-forum/viewtopic.php?f=20&t=5019]
 

mmcnicol

Newbie
Messages
1
diagnosis of my 12 year old daughter 1 month on. I am still crying reading through all the posts, very sad mummy here too, sad for enforced changes to her life, sad for the lack of spontenaity for her, sad for so many things right now, hard to find a positive in any of it, other than she is coping tremendously well, i am so proud of her and her 2 little sisters who help her out holding her meter until she gets her fingerstick sample ready and my 4 year old who is able to read the insulin units for her becasue her eyesight is still changing so rapidly one day long next short sighted. Its a day at a time just now for us.
 

Lenasmummy

Newbie
Messages
3
I understand where you are right now . It was one year yesterday my 11 yr old daughter was diagnosed. I'm happy to support you in any way I can .
Hugs Noorea
 

lisamariebrankin

Active Member
Messages
29
jayne15 said:
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.

HELLO

First of all i would like to say it does get easier!!!!

My daughter was diagnosed at 13 months old. Nearly six months on and everything has pretty much become second nature!!!

As you can imagine, Ava was petrified when we came near her with the finger pricker and injection pens but now she holds the meter and helps soak the blood sample up herself!!!

Ava was always a milky baby and completely grazed when it came to eating... she now has set meal times and snack times/amounts. she has took to it all like a duck to water... just takes a small amount of time to get your head around it. i advise you look up the 'carbs and cals' book or app on iphone. It is amazing at helping you with carb amounts in certain foods and meals!!! It was pretty much our bible for the first 3-4 months lol.

Also in terms of Ava being constantly thirsty and not being able to have anything, we buy her the perfectly clear sugar free water (not fair her being stuck on plain old water while my other children had their squash).

Eventually you should be offered the pump, an alternative to injections. I have just started my training on this and i have a feeling it is going to make life even easier!!!

if you ever need any help then dont be afraid to ring your dn, (mine have been absolutely amazing), or on here for support!!! you are not alone and you shouldnt get too upset. Having a t1 child is life changing, but you will get there... with your strength and support your daughter will be perfectly fine :))))

KEEP UR CHIN UP xx
 

jayne15

Well-Known Member
Messages
115
Well 2.5 weeks post diagnosis Meg is back at school and coping really well, thank you for all your support and encouragement, she has started her 'honeymoon period' so only on long acting insulin now as she kept dropping too low. Her Tummy is very swollen due to an enlarged liver and she has put weight on prob because of the constant snacking so this will be our next challenge. Things have gotten easier as you all advised, diabetes isn't quite second nature yet but we are certainly accepting things and have less tears, I am humbled to hear your stories and advise it it really has helped and made me feel a little less isolated take care everyone x
 

lisamariebrankin

Active Member
Messages
29
jayne15 said:
Well 2.5 weeks post diagnosis Meg is back at school and coping really well, thank you for all your support and encouragement, she has started her 'honeymoon period' so only on long acting insulin now as she kept dropping too low. Her Tummy is very swollen due to an enlarged liver and she has put weight on prob because of the constant snacking so this will be our next challenge. Things have gotten easier as you all advised, diabetes isn't quite second nature yet but we are certainly accepting things and have less tears, I am humbled to hear your stories and advise it it really has helped and made me feel a little less isolated take care everyone x

That good news, im glad you are both doing better...

When Ava was in hospital when she got diagnosed, we were told to expect her to eat loads for a while... cant remember why now as its been a while but her bigger than normal appetite should stop.

How have you coped with her hypos??? This was one of the biggest problems we had with Ava was her constant hypos... luckily with all the help and advise we have been given from the dn we have dealt with them quite well.

Just keep doing what your doing, sounds like you are doing fab x
 

jayne15

Well-Known Member
Messages
115
Hi Lisa

The hypos have been our biggest fear she had a 1.8 at my mums (first time I let her out of my site for an hour !) and she has had several 3's usually at school, a glucose sweet does the trick and then usually her dinner (something sweet and then something to eat) since we have stopped the actrapid these have become less now the night time is becoming a bit of an issue she had a 3.4 last night so we were making her eat at midnight and then neither of us could sleep doing 2 hourly BM's with the fear she would go hypo in her sleep, I am going to ring the DN today as we just cant get her BM's above 6 going to bed. Because we caught meg early (not yet acidotic) she diddnt loose much weight and she was always on the bigger side so this is a concern but one for the future as can only cope with challenge at a time, back to work Thursday which I am sure will push our coping limits further lol !

Lisa when did ava start on the pump ? she sounds like an absolute star.
 

daisybell

Member
Messages
5
Try and get on Diabetes UK Parents' Weekend (If they still do it). I went as adviser several years ago. It was one of the most moving experiences of my life. By the time everyone went home they had smiles on their faces and lots of problems had been solved. Do go you will learn so much from other parents and children in the same "spot" as you. Good luck
 

lisamariebrankin

Active Member
Messages
29
jayne15 said:
Hi Lisa

The hypos have been our biggest fear she had a 1.8 at my mums (first time I let her out of my site for an hour !) and she has had several 3's usually at school, a glucose sweet does the trick and then usually her dinner (something sweet and then something to eat) since we have stopped the actrapid these have become less now the night time is becoming a bit of an issue she had a 3.4 last night so we were making her eat at midnight and then neither of us could sleep doing 2 hourly BM's with the fear she would go hypo in her sleep, I am going to ring the DN today as we just cant get her BM's above 6 going to bed. Because we caught meg early (not yet acidotic) she diddnt loose much weight and she was always on the bigger side so this is a concern but one for the future as can only cope with challenge at a time, back to work Thursday which I am sure will push our coping limits further lol !

Lisa when did ava start on the pump ? she sounds like an absolute star.

Ah Ava was took into hospital DKA, Thats probs why we were told to expect her to eat loads for short amount of time then. We are very lucky she is still here the state she was in!!

Avas lowest hypo has been 1.1 and she showed no signs what so ever!! but then sometimes the sweat can be pouring off her and she is only 3.7... we have had literally over 100 hypos since she was diagnosed. I know that sounds worrying but i am telling you this to calm your nerves about them. I remember really getting panicked in the first few weeks when she fell hypo. Now it isnt as scary.As longs as you know how to bring her levels up ok then she will be absolutely fine.

I know the worry of nocturnal hypos though... does your daughter have a supper snack???
Ava usually has 13g carb supper snack (bottle of milk)... but if her bloods are below 7 then we are to increase this to 20grams snack to prevent any night time or early morning hypo. (this was advised by dn). Another thing they changed with Ava to prevent the night time early morn hypos was to give the background insulin in the morning, rather than at night. Maybe you could ask ur dn about doing similar?

Ava isnt yet started on the pump... we are in the process of training for it, from speaking to another parent on here it sounds like im still a few months off her being on it to :( Ava is on Novorapid for her fast acting insulin and Glargine lanctus for her background insulin.

Im quite lucky Ava is so young that alot of the diet restrictions dont count as much for Ava as she requires the fat content in her food until she is 5... her diet changes and becomes alot stricter then.

As far as work is concerned, as Ava is so young, and cant tell any1 when she isnt feeling well (hypo etc), i literally had to take a good 4 months off (luckily im a self employed hairdresser so it wasnt a huge issue, apart from money lol)... I went back part time only a few weeks back, most of the time taking ava with me or having clients come to me. I hope everything goes ok with all that in your case.