mum of 3 year old T1

[Mini-Mimi]

hi all, my 3 year old daughter has just been diagnosed with type 1 diabetes and well, i'm lost.
she's just been discharged from hospital and i feel as though i dont know what to do, i have given her all her insulin injections and BSL's for the past 24 hours but feel as though i've been overloaded with info and am petrified of making a mistake.
her BSL's are all over the place at the moment while we try to work out a diet plan for her, she's due another reading in 45 mins and i'm ok at doing it but scared if the result is too high or too low, that i wont know what to do.
i suppose you hear this alot though.
in hospital she wasn't eating properly because she saw it as an adventure (apart from the ingections) and wanted to be in the play room all the time, i brought her home and it's all caught up with her and she's zonked out in bed without really having a proper tea so i'm panicing!!!!
i know i'll learn and cope but until i do, how do i manage?????

 

[Matt1212]

Hi - first thing to say it does get easier
Our daughter was diagnosed around 2 years ago having jut turned 4 years old
it seems a huge amount to take in at first and so much responsibility with blood tests and injections
but it will gradually become a lot easier

blood glucose levels wil vary and it is not your fault - just do the best you can based on the most recent reading

reference tonight jut make sure she has had enough to eat to cover the insulin given
if you are worried she may go low it makes sense to do extra tests and if she is a bit low you can wake her up and give milk and a biscuit etc

maybe even test her in the night (if my daughter is below 7 at midnight i test at 2am) just to make sure she is OK

good luck
Matt

 

[Mini-Mimi]

hello matt
her readings are all over at the mo, only having been diagnosed on monday, she was 16.8 when we left the hospital, she was sooooo tired she almost fell asleep stood up and hasn't had alot to eat, i've just done another reading which was 18, i am testing again at 2 and am dreading it going any higher

 

[Matt1212]

keeping her readings stable is obviously important
but it will take a good few days or more to start to get a pattern
a reading of 18 is not ideal but for tonight at least you have peace of mind that she will almost certainly not go below 4 and have a hypo

so try to get a good nights rest , the 2am reading will hopefully be a little lower and you can rest until the morning

take each day/night as it comes

there are a lot of people who can help on this site so as you have questions on the type of insulin regime you are working with loads of people can help
(our daugher has insulin with each meal , maybe you are the same or maybe you are on two injections a day regime)

have a good night
Matt

 

[Jen&Khaleb]

Hi there and sorry to hear of another family dealing with diabetes. You'll have to expect that readings will be all over the place for a while and it is best not to panic about them too much. We'd need a crystal ball to get it right every day. Obviously the really high/low ones are a concern but even 3 years after diagnosis my son still pops a 20 on occassion (mainly when sick). Khaleb would still have 1-2 hypos per week but not usually below 3.5.

As you get a routine of meals you'll find the levels really settle. Counting carbs is the easiest way to work out how much insulin is needed. I hope you can contact the medico's at hospital any time you feel the need.

Diabetes turns life upside-down for quite some time but you and your daughter will get back to doing all the normal things and eating mostly normal food.

It would be nice if more new to diabetes parents could spend time at the start with a bit more moral support. It is just a case of muddling along with lots of trial and error. You're not alone and we have all been where you are now.

 

[SophiaW]

Hi, I'm so sorry that your daughter has been diagnosed with T1. I remember only too well the lost feeling when my daughter was first diagnosed. She had just turned 4. I agree with you, it's like information overload! But like the others have said it does get easier and you'll settle into a routine.

When your child is first diagnosed you'll most likely get quite a few high readings but that will settle as the insulin doses are adjusted to match your daughter. They like to bring the readings down slowly rather than too quickly and risking hypos.

What insulin is your daughter using?

 

[Vikki2]

Oh, I really feel for you. You're not alone, not unusual in feeling this way, and it's not surprising her levels are all over the place. So big hugs and thinking of you X
My daughter was diagnosed 2 years ago when she was 3. It is a HUGE amount of information to take in. You need to take it one step at a time. Her levels will settle but it will take time and like someone said you can't make sudden changes otherwise you risk going the other way. It needs to be done gradually. I remember at the beginning it was very hard sticking to our usual routine but you need to - you need to get the insulin to be right for her lifestyle and routine rather than get her to match the insulin if you see what I mean? At the beginning our daughter was sitting around, very inactive, having spent a week in hospital and then a week at home while I came to terms with everything. Her levels started to settle but as soon as we began our usual week (back to nursery, dance class, trips to the park/soft play) then her levels went all over the place - because we had matched her insulin to an inactive little girl which she isn't. Am I making any sense??? I hope so!!!
Anyway, good luck and take care
X

 

[annettekp]

Hi

I know exactly how you feel. My son was diagnosed in February this year aged 20 months. His levels for the first 6 weeks or so were way too high rarely below 15 BUT once we got his insulin levels sorted and got on board with the carb counting, blood levels came down. It didn't help that he was making up for losing weight before diagnosis and eating like a horse.

A friend of mine described it as a vertical learning curve because there is so much you need to know and take in instantly. Its hard, really hard.

Like Vikki says, take it one step at a time and match the insulin to your little girl's needs.

Good luck

Annette

 

[Mini-Mimi]

hi, thanks for all the lovely replies, her BSL came down when i did her 2am reading so i stopped stressing and got a huge 5 hours sleep, lol
however, i've just been an picked her meds up from the chemist and was overwhelmed by how much there was and what it's all for, so again i am stressing like mad, i'm taking a hour to myself then gonna sit and look thro it all and try to make some sense of it............
i just cant get over the thought that for the rest of her life my little baby is gonna have to have all these jabs everyday, i know there are people worse off but my heart is litterally breaking for her.
the insulin she's on is 6 of novomix30 (is that right, i dont have it in fron of me) in the morn and 3 at night, then a rapid something or other as a correction insulin??? all very mind boggling.

 

[SophiaW]

My daughter started out on the Novomix 30 insulin. They often start you on that because it means fewer injections which is welcome in the early days when injecting is something new. The important thing to remember is to give her the injections of Novomix 30 at the same time each day and she must eat her meals at the same time each day, lunch being very important to keep to a regular time.

Something else I want to mention which wasn't mentioned to me and would have been useful advice to know when using the Novomix insulin. Try to keep each breakfast, lunch and supper meal each day to a similar amount of carbohydrates. I don't mean keeping breakfast the same amount of carbs as lunch and as supper. I mean keep breakfast each day to a certain amount of carbs. Lunch may be a different amout of carbs to breakfast but try to keep to a similar amount of carbs for lunch each day. With your daughter taking on a set amount of insulin each day it means the amount of carbs she eats at each meal each day is better to stay consistent. That way you avoid high readings one day and low readings another day. For example a breakfast of cereal can be quite high in carbohydrates, the following day you might give your daughter scrambled eggs which is low in carbohydrates, you want to add something to those scrambled eggs to bring it up to a similar carb value - perhaps some toast, fruit and milk.

I wasn't told this information, I guess they didn't want to overload me with info, but it was vital information that I should have known in order to keep consistent readings. If you're not sure about working out the carbohydrates in meals, as you may well not be familiar with, then ask your care team if you can see a dietician who can explain this to you. I know this information would have helped me tremendously in the early days.

I'm glad her readings settled a little last night and you got some sleep. Remember there's lots of help here if you need to ask questions

 

[miasmum]

Hi there, just said I would tell you the most important piece of advice I can give you - what I have learned is do not blame youself, you are doing great! You are there for her and thats all you need to be at moment. My daughter was diagnosed in May 20 mths old, no family history and out of the blue. She was in hospital 12 days (got rotovirus in there). Absolutely the worst few weeks of our lives the lack of sleep, stress, fights, anger - you name it. So far its still very hard work but you get into a routine. You will rarely get 2 days the same, so many factors influence insulin absorbtion. We called our Diabetic Nurses daily for weeks and they told us exactly what to do - use them! My daughter started on an insulin pump 2 days ago, its a huge undertaking a serious amount of work but we are hoping it will get easier with time. We are still getting days where we are upset this has happened her but when we were in the hospital we saw some awful cases and although at the time we didn't see it we know that one day she will be able to care for herself.
We probably only had 1or 2 nights since shes been diagnosed where we didn't have to get up in the night to check her sometimes necessary - sometimes I just woke through sheer worry. Toddlers are very difficult to get under control so you can only do your best. Good luck and hang in there!

 

[Mini-Mimi]

thanks everyone, i still get very teary, i'm not blaming myself cos i know it's just one of them things but i look at her and feel it's just not right that she has to go through this for life, i suppose you all do that though, it so unfair isnt it?
i am still playing it by ear, this morning she was 3.6 when she woke up, she's had some breakfast and her insulin, she's acting her usual cheeky monkey self so i'm not too worried about that reading.
i just worry that she's not eating enough, i know she's only got a small tummy but she's always asking for more biscuits, crisp, chocolates ect and it's hard saying no to her, although i am doing.
she is a big fruit eater but now i cant just giver her a bit of fruit when ever, or if i can, i havent worked it all out yet, go so much info swimming round my mind......... i know i will cope, and i'll look bad an think "god, you was a mess" but at the mo i just cant see how i'm going to manage all this!

 

[SophiaW]

You'll probably find that your daughter needs snacks inbetween meals, usually mid-morning and mid-afternoon to prevent hypos. As with all children it's better to keep it as a healthy fruit snack rather than crisps or other unhealthier options.

A small kids size apple contains roughly the same amount of carbs as a digestive biscuit. Most bags of crisps (like Walkers) contain more carbohydrates than a small piece of fruit. Many fruits are fine as a snack but there are some that you need to take care with, mostly the tropical fruits (bananas, mango, pineapple) and dried fruits. Not saying she mustn't ever have these fruits but take care with portion sizes.

If you're finding that your daughter wants to be snacking when she shouldn't be (high blood sugars) then there are quite a few carbohydrate free or low carb snacks that she can have. I remember my daughter at 4, and I think most young children are the same, she liked to graze her way through the day. By offering low carb or no carb snacks she didn't feel that a lot was being taken away from her. As she's got older her inbetween meal snacking is far less than it used to be. I think little ones often need to eat more regularly because their tummies are that much smaller.

You will manage all this, don't worry Call on your diabetes care team as much as you need to, that's what they're there for.

 

[Mini-Mimi]

what are the snacks that are carb free or low carb? i was told cheese strings, carrot sticks, cant remember what else they said, i'm still trying to fathom it all out, i dont want to over feed her but i dont want her to go hungry either, finding it so bloomin hard at the mo
god i sound like a right moaning minnie dont i?

 

[SophiaW]

There was a thread from a couple of years ago about low carb snacks which I tried to find so that I could link you there but it seems to have gone. Here are some ideas to get started with, I'm sure others will fill in any foods that I've missed. Some are virtually no carb and others or low in carbs. Even although some are low in carbs just watch the quanities so that they don't add up too much. Generally if you keep it all to snack size portions you won't run into trouble.

sugar free jelly (you can buy ready made in a pot or make up your own from sachets)
carrot, cucumber, red orange and yellow peppers, cherry tomatoes, celery - I cut these into sticks
nuts, plain popcorn
olives and cheese - babybel, cheese strings, feta - depends what she likes
eggs - hard boiled can be nice for a snack
avocado pear
melon, strawberries and blueberries
cold meats - hams, cold chicken drumstick (make sure it's not breaded chicken)
mushrooms - my daughter loves the raw
sliced raw cabbage

 

[Mini-Mimi]

thank you soooo much, she's never been a big eater, usually just has bits and bobs throughout the day so now i'm trying to get her to have proper meals at set times but she rarely eats everything i put on her plate and then 10 mins later i get "mummy, i'm hungry". i'm going to have to try and totally change her eating habits, but it'll benefit her wont it?
sorry for waffling on, i still feel tho i've been chucked in the deep end and am fighting to stay afloat. i'm sure you all know what i'm going through and it is so nice to know i can ask a question here and get a reply pretty fast, i think i'm gonna be a regular here.

 

[Deb Arkle]

Hi Mini-Mimi - we always keep a stock of Pepperami, Babybel, marmite cheese, cocktail sausages, cheesestrings & prawns in the fridge - they are all low or no carb, and are good for in between meal snacks.

I hope things improve for you soon - it does get easier. We're 5 weeks into diagnosis and can now sleep all night without having to keep checking that she's still breathing!

 

[Han&Yas]

Hey there.. My heart goes out to you, so sorry to hear about your little girl, Feel like you described my little boy there, all toddlers mostly graze through the day, they hardly sit down for a structured meal, it all sounds easy in theory, test before each meal, and give insulin bla bla but dont worry too much.. it'll get easier..

If you are counting carbs make sure you get them to book you in with the dietician to give you a little session on carbohydrates in foods, what rises bg levels etc.. They have some nice little posters that show what variety of foods can be 10gs of carbs etc , I stick them up on my fridge... for refrence if I ever forget but soon your brain will store everything....

Its best to look for foods with a low GI (glyaecemic index) that means that it allows the blood sugar levels to rise steadily.. rather than shoot up say if she has fruit juice or something..
Tesco's do brilliant little fruit shoot drinks with low sugar, carbs n sugars in that its below 2g or something so will not affect a gr8 deal, or if you can get no sugar drinks , its great too..

They also do little apple juice packs with low GI, for say hypos but make sure you dont give the whole little pack depending on how low the hypo is..

If you can get breakfast with insulin in, then maybe a snack of 10g mid morning, like sum cucumber slices and some carrot slices (maybe a small bit of humous nt sure hw much carb tht may be) and then lunch with insulin, again between lunch and dinner another snack, and then dinner with insulin... thats what we do right now, but we do get some days where my ^ little plan goes out the window as he may not want to eat lunch at the appropiate time, or may eat a little bit then hr or two wants some more.. It is very tricky with young children, you will have good days, and bad days, but as evryone else said take each day as it comes, and we are all here...

P.s dnt feel bad about the fact that you're emotional, or are 'hating' diabetes.. I still have those days and he's a diabetic for a yr now in 3days time :? It's a very horrid thing, but we will all one day get used to Mr.Diabetes and he will soon became a 'unwanted' member of the family :wink:

Lots of Love Hana

 

[Mini-Mimi]

thank you so much for all of your replies, i am slowly coming to terms with it and not crying at the mere word diabetes no more.
were still up and down with her BSL's but then again, it's only been 12 days so i dont expect everything to just fall into place straight away.
my new hurdle is getting her to let other people do her blood tests and injections,( any advice?) as it is i'm the only one doing it at the moment, altho her teacher did one on friday at school so that will be a huge help with me not having to go back an forth to school.

 

[Jen&Khaleb]

Glad to hear diabetes isn't a four letter word anymore. Sometime soon you'll probably be sick of hearing about diabetes. I know a mum whose husband and 2 boys have T1 and she sometimes doesn't even want to hear the word. That family have all gone to pumps and it seems to have made life a little easier.

I've not had trouble with other people doing Khaleb's blood sugar if they are confident and just do what I do. Khaleb does get put off and worried if people are fluffing about with a terrified look on their face. I try to get people to practice on me or themselves before doing Khaleb so they are calm and organised. I have a little instruction sheet in with his kit as a reminder of the procedure. It is good to keep written instructions for people as it seems to be followed more accurately. This goes for information in your hypo kit also. Just talking to people isn't good enough.

I only let my sister give Khaleb his injection at times but she tends to leave a bruise because she pushes down on the whole pen and not just the plunger. I'm trying to teach her how to do it gently but Khaleb wiggles a fair bit. Stuffing up injections can mean I don't get sleep so I'm much more likely to just do them myself. I don't have any intention of letting Khaleb's daycare staff do injections.

Don't worry too much about the ups and downs. I work in a broader range of between 4 and 10.5mmol because Khaleb is young. I've let him be a bit higher today because we went to a water theme park. Khaleb tends to go low in the wee hours of the morning after such a big, active day. Lots of fun! Hopefully I wont pay for it tonight.