# Newbie here. mum of recently diagnosed 8 yr old with type 1



## Gemma444

Hi all 

Just wanted to introduce myself, I was told about this website from Bev one of the members who I have been speaking to already (thanks Bev, you have been really helpful). I'm Gemma and my son was diagnosed with type 1 diabetes almost 2 weeks ago. I couldn't believe it when the doctor told me that my son was diabetic I blamed myself, what had I done wrong. I got loaded with informaion from doctors, nurses, dieticians, and the day Jack was discharged from hospital we met Tracy our diabetes nurse, she is really nice. At the moment i just feel lost in it all to be honest. 

Jack is on 2 injections a day. One in the morning and one before tea. the insulin is called mixtard 30. His sugar levels arent great at the moment hes up and down and im also trying to work out what to give him at snacktimes as hes been out to play this week and has come in twice to have his finger prick done just before dinner and his blood sugars are low. 

My son has been wonderful with it all having his injection and doing the finger pricks as he calls them. He starting to try and do the injections himself. I'm very proud of him. 

Any advice you can give will be greatly received. 

Thanks
Gemma


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## insulinaddict09

*Hello and welcome to the forum , sorry to hear this news about your son You both sound like you are coping brilliantly ! Well done I'm not a parent but a type 1 , so know all about finger pricks and injections ! You son is doing better than I was at first ! we have alot of parents who will be able to help and advise you on anything you are not sure of.  *


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## Northerner

Hi Gemma, a very warm welcome to the forum You'll find lots of parents here happy to give advice and support - Bev being one of them!

There is a huge amount to take in at first, but just try and stick with the important things at the moment - recording details of fingerprick tests, food given, activity levels - so that you and your nurse will have something to discuss at the next appointment. It's great to hear how your son is adapting so well to things.

Anything you need to know, just pipe up!


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## sasha1

Hi Gemma ...

Welcome to the forum .. the large extended family ...  

So glad you have already spoke to Bev .. 

I so know how you felt and feel over your sons diagnosis .. I was exactly the same when Nathan was diagnosed 2 and a half years ago at the age of 11 .

Wow ... Thats brilliant that your son is trying to give himself the injections ... amazing .... ...I unfortunately can help as regards to the twice daily injections as Nathan is on 4 MDI and has NovaRapid and Lantus.

In the first few weeks after diagnosis Nathans BG's were erratic .. swinging form high to low .. To ease the lows a little we worked on a little but often approach to eating .. 

Heidi
xx


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## Mand

Welcome Gemma.

My son was diagnosed in July 07 at the age of 10. He started on two injections then swapped to mdi (multiple daily injection) in Nov 07. Life became much easier on mdi. In July 09 he started on a Veo pump and life became even more easier. 

I understand the shock of how you are feeling now but i would like to re-assure you that it does all get easier.

I am sorry this has happened to your son. You will find a huge amount of support and advice on this forum. Feel free to ask any questions, no matter how small.

Feel free to pm (private message) any time.

Look forward to getting to know you.

Mand


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## Gemma444

Hya Mand, Heidi, Northerner, insulinaddict09. 

Thank you all for the warm welcome. Im sure I will be spending lot of time on here in the future. 

Hi Northerner, I am writing everything down at the moment. Im writing down what Im giving him for snacks and what his blood suagr results are to see whats working and what isnt. Today he had a reading 3.2 before dinner. I had given him 2 plain biscuits and a banana for his mid-morning, I think he sneaked in another biscuit as he was walking through the door. This mite be ok when hes back at school as he will be sitting down alot of the time, but he has been out playing with his friend for most of the day on his bike and playing football. He is a very active child he doesnt want to sit down for very long. Can anyone suggested anything else I could try him with. 

I might try what Heidi as suggest with little but often approach to eating. thanks Heidi.

Mand, how did you find things with 2 injections? Ive heard good things about the 4 daily injections rather than just the 2. Is it just me or is everyone always clock watching, I seem to be always looking at the clock. 

Gem xx  

I hope i'm making sense as i'm only making bits of sense out of things myself.


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## sasha1

Hi Gemma ...


For snacks you could try ... fruit ... bananas are a good one .. Crisps .. but try to aim for wotsits, monster munch .. corn based rather than potato .. cereal bars are also a good choice.

I spent the first couple of months constantly watching the clock ... for meal times, BG Testing, snacks etc ... I think this is because everything is new .. the routine etc ... I promise you that it becomes second nature befroe to long ... 

Heidi
xx


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## Steff

hi and welcome


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## bev

Hi Gem!!!!!!!!!

Glad you found us! If you have any questions, put them on the 'general chat' section of the forum - because more people will see them then.

I am not sure how many people still use the 2 injection regime so you may not get the level of advice you need. But on the other email list i told you about - there are parents whose children used to be on this method and there are still a couple of children still using it too - so you may get more indepth help from there. Both forums are brilliant - so stick around and i am sure we will all get you through this! I hope J is doing ok and getting used to it all. Bev xxx


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## Carynb

Hi Gemma
My son is also 8 and was diagnosed 2 weeks and 4 days ago- not that I'm counting!! I totally understand where you are coming from- have a look at some of my previous posts and you'll see. J is on 4 injections a day and his blood glucose has become a bit more stable inn the last few days but he still seems to have a hypo everyday at some point. This site is great, it has made me realize that I'm not alone and everyone goes through the same type of feelings. Please feel free to message me anytime- I'm no expert but am good at listening. 
Take care 
Caryn x


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## wendyh

Hi

You sound as though you are both doing fantastically well.  My daughter was diagnosed 3 years ago when she was 5 - we are making absolutley no progress whatsoever with her taking control of her own jabs - think this may be a little control thing on her terms only.  She does have fantastic hypo awareness and knows what she can eat and what she should limit - thankfully.
We are seaking advice of the phsycologist at the clinic for tips on the jabs as she has now developed a big wall around doing her own jabs - she is perfectly capable but throws a hissy fit every time we try.  Patience is very difficult around this one.
So.................Give your boy an enormous pat on the back from me for being a very brave boy.
Take care,

Wendy x


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## wendyh

Hey Carynb

How are you coping?

Wendy


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## Mand

> Mand, how did you find things with 2 injections? Ive heard good things about the 4 daily injections rather than just the 2. Is it just me or is everyone always clock watching, I seem to be always looking at the clock.
> 
> Gem xx




Hi Gemma

We only stayed on 2 injections a day for 3 months. The truth is that we found it very difficult because he had to eat at set times and could not eat to appetite. He had to eat snacks at set times too. Life was very diffuclt for us back then because our lives had to fit around the diabetes. The advantage, of course, was only 2 jabs a day and no school lunchtime jab.

When he changed to mdi, it was like we got our lives back to a large extent. Now diabetes fitted around our lives instead. He could now eat what he wanted when he wanted it as long as he injected enough insulin to cover the carbs. No more clock watching! No more eating bang on time with definate snack times. It was like a weight off our shoulders. My son was self injecting right from diagnosis so doing the school lunchtime injection was no problem to him. His blood sugar levels were much more controlable on mdi too. 

I would highly recommend mdi. Feel free to ask me anything about it or pm me. 

My son went on to develop a needle phobia so was put forward for a pump. He started on a pump a few weeks ago and our lives have changed yet again but for the better! It is amazing! No more jabs, no clock watching, no Levemir/Lantus at bedtime. Just eat like everyone else and push a button! 

The pump is not without its disadvantages but is truly amazing! 

Anyway, i am going off subject here! Sorry, Gemma.

Please keep us updated on your progress and keep asking anything you want. I wish i did not have so much diabetes knowledge but sadly i do. So i might as well put it to good use! Ask, ask, ask! I am no expert but will help where i can. 

Mand xx


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## Gemma444

Hi again all, 

sorry its took me a few days to reply i am back at work now. I have never worried about Jack so much before. I even rang my mum at lunch time to see if he was doing ok. 

The hypos are still happening just before luch time, tryed giving him a bit of choc as he is out playing most of the morning but that hasnt worked. I spoke to our diabetes nurse yesterday an she has reduced his morning insulin to see if that helps but last time he ended up having really high  blood suagrs close to bed time. 

I know what you mean Mand about the strict meal times, I had finished work today and had to get jacks tea on as soon as i walked through the door. The 4 injections sound much better. Jacks done another injection himself today so thats good. Im just worried about him doing it right and he is its me panicing. 

Hi  wendyh im sorry to hear about your little one must be hard for all of you esp with her only being so small. I really didnt think my son would do the injection himself, so it has really suprised me that hes so willing to do it. 

Hi to steff09, nice to meet you. 

Hi bev im really glad you suggested me this website, I have been doing plenty of reading. 


 Gem xxxx


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## Gemma444

Carynb said:


> Hi Gemma
> My son is also 8 and was diagnosed 2 weeks and 4 days ago- not that I'm counting!! I totally understand where you are coming from- have a look at some of my previous posts and you'll see. J is on 4 injections a day and his blood glucose has become a bit more stable inn the last few days but he still seems to have a hypo everyday at some point. This site is great, it has made me realize that I'm not alone and everyone goes through the same type of feelings. Please feel free to message me anytime- I'm no expert but am good at listening.
> Take care
> Caryn x




Hya caryn 

How you getting on?

my son seems to be having a hypo almost everday aswell at the moment. i just panic and think i have done something wrong. I'm glad bev told me about this site as I was just thinking you have no-one to talk to who understand what you are going through. 

Gemxx


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## bev

Hi Gem!

Sorry to hear J is still having hypo's mid morning. Have you tried giving him a cereal bar? These can be good as they are slow release with a bit of fast (if you see what i mean) so it might just help to stop it before his lunch? Are you actually treating the hypos with the chocolate? If yes then it wont work as well as pure glucose (jelly babies or glucotabs etc) as the fat in the chocolate will delay absorption of the sugar.
Have you asked your dsn about the 4 injections rather than the 2?
Well done to J for doing his own injections - what a little star! Your all doing great Gem - it must be hard leaving him and going to work - but he is in the best hands - so try not to worry - and if there is a problem you are at the end of the phone.Bev x


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## Mand

How is it all going? xx


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## Gemma444

hya Bev and Mand

I will try a cereal bars. We treat his hypos with normal pop or hypostop he seems to like the hypostop hahaha. going to get some jelly babaies aswell. how many shud i give jack 2 or 3 jelly babies?

Spoke to our diabetes nurse and the insulin has been reduced i have just gone to do is blood sugars before he has his injection and hes hyper this time. I'm speaking to her again Monday so i will put my concerns across to her and ask about the 4 injections. Hes was on 7 units in the hospital and then he was having hypers in the late afternoon. same as today. I thought this might happen. 

I just feel i am doing something wrong, help!! I'm feeliing really down today. I'm going up a friends later so that might cheer me up a bit


Gem xxxxxxxxxxxx


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## Adrienne

Hiya Gem

I'm Adrienne and my daughter Jessica now 9 has been insulin dependant since 5 weeks old.  

I am thinking that your son is on two injections a day of mixed insulin.   Unfortunately no child should be put on this regime anymore and its a cop out on the part of the hospital and I'm sorry you are battling highs and lows.   On mixes you will do and I know you are feeling guilty but let me assure you this is most definitely 100% not your fault.   

On mixes you chase insulin all day with food.   The general pattern for most children on twice daily mixes are very high mid morning, hypo by lunch time and possibly high mid afternoon and hypo by tea time.

The only way to deal with this is with food.    Snacking is essential when on twice daily.   With my daughter when she was originally on twice daily, years ago, even if she was in the 20.0's mid morning we still had to give her a cereal bar otherwise she would crash down by lunch time.    So the regime was :
Breakfast
Snack
Lunch 
Snack
Tea
Bedtime snack

The only reason children are put on twice daily is that the medical teams say it is easier for the schools as they then don't have to supervise or administer an injection.    Not good and not right.

I would look into the 4 daily asap if I were you, you will find much more freedom, you and your son.   The insulin will not be in charge, you will be.  You will be giving insulin to match the food not chase the insulin with food as you are doing now.

Just a quickie about snacks and cereal bars.    Some of these cereal bars are extortionately high in carbs.  You should be looking at about 15 grams of carbs per snack.    I used to scour the biscuit aisle and worked out that two biscuits of a certain type would add up to between 14 and 16 carbs.   There are a few cereal bars that are around 15 cho (carbohydrates).  The Harvest Cheweee bars are ok at 15 cho.    Then there are the coco pop bars, the frostie bars etc, they are also ok would you believe.  However things like the trackers etc can be in the 20's or higher so I wouldn't touch them with a barge pole.    You will soon see what is a good amount of carb or not.

Sorry I have waffled but I could go on and on for ever (just ask the others).

I only wanted to reassure you that you are doing just fabulous.   The highs and lows are not your fault nor your son's so please don't beat yourself up about it.

Take care


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## Adrienne

I think about 5 jelly babies are ok or you can get the mini packets of haribo and the whole mini packet is ok.   Watch though as these might not be quick enough acting or he might eat them too slowly.  You just need to get the quick acting in quickly so if he has the sweets make sure he eats them and not sits and sucks them as I know my daughter likes doing !


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## grahams mum

Adrienne said:


> Hiya Gem
> 
> I'm Adrienne and my daughter Jessica now 9 has been insulin dependant since 5 weeks old.
> 
> I am thinking that your son is on two injections a day of mixed insulin.   Unfortunately no child should be put on this regime anymore and its a cop out on the part of the hospital and I'm sorry you are battling highs and lows.   On mixes you will do and I know you are feeling guilty but let me assure you this is most definitely 100% not your fault.
> 
> On mixes you chase insulin all day with food.   The general pattern for most children on twice daily mixes are very high mid morning, hypo by lunch time and possibly high mid afternoon and hypo by tea time.
> 
> The only way to deal with this is with food.    Snacking is essential when on twice daily.   With my daughter when she was originally on twice daily, years ago, even if she was in the 20.0's mid morning we still had to give her a cereal bar otherwise she would crash down by lunch time.    So the regime was :
> Breakfast
> Snack
> Lunch
> Snack
> Tea
> Bedtime snack
> 
> The only reason children are put on twice daily is that the medical teams say it is easier for the schools as they then don't have to supervise or administer an injection.    Not good and not right.
> 
> I would look into the 4 daily asap if I were you, you will find much more freedom, you and your son.   The insulin will not be in charge, you will be.  You will be giving insulin to match the food not chase the insulin with food as you are doing now.
> 
> Just a quickie about snacks and cereal bars.    Some of these cereal bars are extortionately high in carbs.  You should be looking at about 15 grams of carbs per snack.    I used to scour the biscuit aisle and worked out that two biscuits of a certain type would add up to between 14 and 16 carbs.   There are a few cereal bars that are around 15 cho (carbohydrates).  The Harvest Cheweee bars are ok at 15 cho.    Then there are the coco pop bars, the frostie bars etc, they are also ok would you believe.  However things like the trackers etc can be in the 20's or higher so I wouldn't touch them with a barge pole.    You will soon see what is a good amount of carb or not.
> 
> Sorry I have waffled but I could go on and on for ever (just ask the others).
> 
> I only wanted to reassure you that you are doing just fabulous.   The highs and lows are not your fault nor your son's so please don't beat yourself up about it.
> 
> Take care



 i agree with adrienne i struggle for 6 months with graham on 2 injection


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## Sugarbum

Hi Gemma,

Sorry to come into this thread abit late, I have only just seen it and just wanted also to welcome you. I cant offer you better advice than the others you have met already (and they will continue to offer you brilliant support- you have been referred by forum royalty!) but I still wanted to say hi.

I am sure you are probably going through a dreadful time and with much stress. I might not be able to personally advise but we are here for you, even (as we often say) just if you need a bloody good rant or to let off steam!

I really hope your son gets better numbers soon and things become more managable.

Thinking of you and once again, welcome.

Lou x


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## Gemma444

Adrienne said:


> Hiya Gem
> 
> I'm Adrienne and my daughter Jessica now 9 has been insulin dependant since 5 weeks old.
> 
> I am thinking that your son is on two injections a day of mixed insulin.   Unfortunately no child should be put on this regime anymore and its a cop out on the part of the hospital and I'm sorry you are battling highs and lows.   On mixes you will do and I know you are feeling guilty but let me assure you this is most definitely 100% not your fault.
> 
> On mixes you chase insulin all day with food.   The general pattern for most children on twice daily mixes are very high mid morning, hypo by lunch time and possibly high mid afternoon and hypo by tea time.
> 
> The only way to deal with this is with food.    Snacking is essential when on twice daily.   With my daughter when she was originally on twice daily, years ago, even if she was in the 20.0's mid morning we still had to give her a cereal bar otherwise she would crash down by lunch time.    So the regime was :
> Breakfast
> Snack
> Lunch
> Snack
> Tea
> Bedtime snack
> 
> The only reason children are put on twice daily is that the medical teams say it is easier for the schools as they then don't have to supervise or administer an injection.    Not good and not right.
> 
> I would look into the 4 daily asap if I were you, you will find much more freedom, you and your son.   The insulin will not be in charge, you will be.  You will be giving insulin to match the food not chase the insulin with food as you are doing now.
> 
> Just a quickie about snacks and cereal bars.    Some of these cereal bars are extortionately high in carbs.  You should be looking at about 15 grams of carbs per snack.    I used to scour the biscuit aisle and worked out that two biscuits of a certain type would add up to between 14 and 16 carbs.   There are a few cereal bars that are around 15 cho (carbohydrates).  The Harvest Cheweee bars are ok at 15 cho.    Then there are the coco pop bars, the frostie bars etc, they are also ok would you believe.  However things like the trackers etc can be in the 20's or higher so I wouldn't touch them with a barge pole.    You will soon see what is a good amount of carb or not.
> 
> Sorry I have waffled but I could go on and on for ever (just ask the others).
> 
> I only wanted to reassure you that you are doing just fabulous.   The highs and lows are not your fault nor your son's so please don't beat yourself up about it.
> 
> Take care




Hi Adrienne

thank you so much for you message this is really helpful. i agree about the 2 injections, we dont seem to be getting anywhere with it. It is really stressing me out and i blaming myslef when jacks having a hypo or hyper ( i know i shudnt). he had both yesterday. hyper before his 2nd injection and then hypo before bed. the hypos are happening regular just before lunch time. yesterday was the first time he had a hypo before bedtime but our DN put his insulin down to 7 units 2 days ago and i had a feeling it would happen.

I will go out and try the cereal bars, i think i will get the harvest chewee ones to start off with. Going to go get some from tesco in a bit anymore good ideas for snacks?

Hi Lou and grahams mum how are you both?

gem xxx


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## Adrienne

Hi Gem

Hope I've caught you before you go.    If you are looking for no carb snacks so he can eat then whenever then you need to think protein really, cheese strings, ham, hard boiled eggs, peperami etc etc.

You can use any 15 cho snack for actual snack time.   However we always found fruit did nothing to help so we couldn't use fruit as a proper 15 cho snack.    You can use crisps, toast, biscuits anything that adds up to 15 cho. Avoid raisins, they are hugely high as are grapes.

Gotta go out but will be back later so ask anything you want and if i can help I will do. 

Take a look at www.childrenwithdiabetesuk.org   It is a website purely for parents of children with diabetes.   They have an email group which is absolutely phenomenal.  It is different from here as it is an email group rather than forum and it is purely for children.   I use both as the people on here are now friends but the email group will have information for you galore.   If you do join you will be inundated with emails but you can choose which to delete and which to read.


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## Gemma444

Hya Adrienne

You have been a great help you, im extreamly greatful. I have found the harvest cheewe bars from tesco, they are on offer for a ?1 for 9 bars so thats good. I have also got him some cheese string for inbetween snacks when hes hungry (hes a growing boy and i have been stuggling with what to give him inbetween snack times when he says he's hungry). I found the same when i gave Jack fruit as a snack it did nothing and by dinner he had a hypo so not going to make that mistake again. Im going to speak to my DSN nurse Monday and explain all the concerns I have. Then it should be the school appoitment some time Tuesday, crossing my fingers hat it goes ok. 

I have joined the other website and im on the mailing list. I havent had time to read the emails yet but i will try later on. 

thanks again for your help I do really apeciate it 

Gem xxxxx


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## Adrienne

Gemma444 said:


> Hya Adrienne
> 
> You have been a great help you, im extreamly greatful. I have found the harvest cheewe bars from tesco, they are on offer for a ?1 for 9 bars so thats good. I have also got him some cheese string for inbetween snacks when hes hungry (hes a growing boy and i have been stuggling with what to give him inbetween snack times when he says he's hungry). I found the same when i gave Jack fruit as a snack it did nothing and by dinner he had a hypo so not going to make that mistake again. Im going to speak to my DSN nurse Monday and explain all the concerns I have. Then it should be the school appoitment some time Tuesday, crossing my fingers hat it goes ok.
> 
> I have joined the other website and im on the mailing list. I havent had time to read the emails yet but i will try later on.
> 
> thanks again for your help I do really apeciate it
> 
> Gem xxxxx



No problem, I'm here to help.   If you want my phone number or personal email then ask and I'll PM you.   I'll see you on the other list as well then. You'll find a few of us on there, Becca, Bev and Patricia.  x


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## Gemma444

Hello 

Thought i would put a quick update on. J went Back to school Wednesday there has been some teething problems. yesterday they cudnt ge the blood out of jS finger to do the b/s and when they eventually did it was 1.2 which i think was an error, they rang my partner and he went up (luckly it was his day off) but instead of repeating the b/s they gave him 3 dextrose tablet and when my partner did the b/s it was 11.2. Just wish they would of waited for my partner or re-did the b/s before they gave J the dextroses tablets. J has told me today that they arent giving him his morning snacks that i have supplied. No wonder hes having hypos if thats the case. J said that the school said he doesnt need the snack unless he doesn't feel well so I'm going to ring them Monday and sort all this out. 

Gem xx


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## bev

Hi Gem,

What on earth are the school thinking of? How DARE they tell J he doesnt need a snack? I hope this is a misunderstanding and not the school thinking they know best? The point of him having the snack is to avoid the hypo - why should he wait until he doesnt feel well to have the snack? Also, a snack isnt what he should be having if he doesnt feel well - he should be having glucose!

Gem have you got this in the school care plan about snacks? He should NEVER be refused a snack if it stops him having a later hypo.

The bg test sounds as if they have read it wrong - but it should have gone up after 3 dextrose tabs? Odd. Perhaps you could watch them test him at lunch one day to see how they do it?Bev


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## Gemma444

Hya Bev

I know I wasnt happy earlier I just hope they have made a mistake but they should listen to J, he does know what hes talking about. he will be a little expert before I know it haha. ye its in the careplan and we discussed this with them on tuesday. I will sort it out on Monday.I will mention this to our DSN aswell just to make sure she has put everything clear in the careplan. 

We have our first clinc appt on 1st October. What do they go through on the first appt?

Gem xx


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## Patricia

Hello Gemma

I'm sorry I've only just connected things from the other email group...anyway, welcome here.

It sounds like you are having such a rough time, and it's such early days. I really feel for you. You are doing the right things though by trying to get the school sorted and working with your son's levels... Adrienne and Mand are best placed to help with your insulin regime, but I'm here for everything else too! We started straight onto MDI and are now on the pump.

Snacks-wise, we used sainsbury's maple go ahead bars a lot, and Alpen Light fudge cereal bars. Both of these are 15g carb, and don't have fruit or yoghurt on them, which  E couldn't stand. Also, all of the little packets of biscuits: mcvitties choc digestives and choc chip, and Maryland choc chip -- are 15 g carb, and very portable. Other things we used for 15g carb snacks without much 'holding' power but still tasty were the Muller light yoghurts and ski light yoghurts. Also, a frube tube only has 5g carb, so that's something! and Bev introduced us to the Mikado choc finger stick things, at only 1.5g carb each!

Carb free snacks were a huge problem with us, as E is 13 and has always been a hungry child. We ended up pre-cooking lots of good quality sausages (have to be good quality, otherwise they have carb in them as filler), and he would eat them cold. Also, cheese cubes, nuts, all cold meats, and many plain yoghurts (if he'll eat them without sugar!). These are all expensive items of course, but it's hard to find things that aren't expensive with no carb I think. Sorry. We found it irritating and our food bills went up, certainly.

Well Gemma, I'll keep my eye out for how things are going for you. It will get better. And again, sorry to come to this late.

All best.


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## Gemma444

hi all 

thought i would post a update. J went to his clinic appt a few weeks ago and his hba1c was 9.5, not good. The doctor changed his insulin to humalog mix 25. first few days on the new insuilin we okish he didnt go over 7.9 but after those few days they went back to the highs before tea like today he was 15.5, yesterday 17.2 etc. he still seems to be going low before dinner aswell but its hard to keep track of with him not doing the b/g before lunch at school. i have asked the school to do the b/g today but i havent been able to get a correct answer from Jack as its a long time for a 8 yr old to rememebr his b/g result from 12:30 to tell me when i get  home from work at 4:30pm so i'm unable to add or take off a unit of his morning insulin tomorrow as J's DSN advised as i dont know what the results were. 

Im feeling like its my fault all the time as we arent having many good days at the mom. 

Gem xx


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## Steff

aww hi gemma sorry to hear things are not going so great at the moment , i have bad days myself but i cant imagine how hard it must be for you im on pills and t2 so no where near anything like your child , but i know the parents in here will give you loads of support i just wanted to say i hope things start to get better and you know this place is always here for you hun xxxx


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## Gemma444

hya steff,

 thanks for your message, ye i hope things get better aswell, Im just feeling like its my fault that his b/g are all over the place. xxxx


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## bev

Hi Gemma!

Really sorry to hear little J is suffering.

The first thing you have to do tomorrow morning is go in and see the teacher (or whoever) and give them a 'communication book' or log book. You need them to write down everything that happens in the school day i.e. hypo's hyper's and blood testing. Tell them that you cannot possibly know how much insulin to give him later in the day if you dont have these figures.
You must make it clear to school that J will not be able to concentrate if he is high or low. If he is high this has a knock on effect through the night and he will be up weeing for England - so he wont be any use at school if he is tired. If they dont listen to you and act on it -then send a formal letter requesting that they do these things. If they still wont do it - then i think this comes under the DDA.

If they are not happy to do this - then ring the DSN. Its ridiculous to expect a little 8 year old to remember what has been done through the school day - not your fault - i mean the school. Alex had a little book that the teacher used to write in and tell me about hypo's etc.. it took seconds so not a lot of time!

The very next thing you need to do is ring the DSN and tell her that these mixes dont work for J. Have you asked them about MDI -the 4 injections a day method? Not many clinics use the mixes anymore for the reasons you state above - you just simply cannot get good control (or any) with this method - that is why its being phased out. If they wont entertain the MDI regimen - then its time to change hospitals. This is very easy to do - they cant say no. If you go on the other 'list' there will be lots of people who can help you do this. Someone has a template letter that you can use to send to your clinic requesting a different hospital. (preferably one that has pumpers!).

I know how helpless you will feel - but its not your fault or J's. You have been given the wrong regimen for him and you will never gain good control until things change. Please repeat what you have said here on the other list - you will get tons of advice and support off mums who have been through the same as you.

Let us know how things go with the school - this isnt fair to J or you. Bev xxx


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## Carynb

Hi Gemma, great advice from bev for sure!
J. has a home monitoring diary at school as well as the one at home and teachers write everything in it and I check it every afternoon at 4 when I pick him up. I also use post it notes in his diary to give extra info to the teachers if necessary like if he's been hypo at home before school/during night etc. At first I worried the teachers might think it extra work to fil in diary and communicate wmore with me but I've come to realize that they feel reassured by it- J is the only child the school has had in recent history with T1 so most teachers know very little about it. Our DSN has done a meeting with a couple of teachers and is going back after half term to talk to some of the others.
Good luck with the hospital.
C x


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## Adrienne

Hi Gemma

Sorry to hear you are having problems.

However these are problems that are being faced by lots of mums around the UK with schools who don't really know how to handle a child with diabetes who has a mum who cares !!!   Some mums just leave their child at school and thats that diabetes disappears for a few hours, seriously this happens!!  Not so the rest of us.

The school should have a care plan written out which should be signed by you and the school.    This should state absolutely everything they need to know about J and his care and every eventuality ie PE, swimming, lunchtimes etc.

I feel that your medical team are seriously letting you down.   Personally I feel they are no good anyway as they have put J on mixed insulins and as Bev says there is no way you will get good control.    I only know two children who have excellent levels on mixes and this is out of about 300 plus children I know of with diabetes.     J needs to go onto MDI as soon as you can manage to do it.    You should be taught carb counting as well to get great control by your team.

Take a look at www.childrenwithdiabetesuk.org and have a look at the care plan entitled 'I am Rose'.    Becca has written this for her daughter and its there for anyone to use and alter to their needs.  Its brilliant.

Good luck.


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## Gemma444

hi bev, carynb and adrienne

thanks so much for all you help, I'm going to photocopy a few of J's home monitring diary pages at work to give the school as we only have the one diary or get a little book he can take into school. 

adrienne, i can't find that i am rose care plan could you point me in the right direction please.

I have spoken to the school today as J's b/g was 2.2 before lunch, dont know how that happened!!! I dont think he had his cereal bar for mid-morning snack, yesterday before lunch he was 12.6.

Also wanted to ask you all how far from diagnosis were you told to give correction doses? We havent got that far yet.

I will speak to our DSN again after the weekend and explain my worries also the school was asking me about carbs and i felt a bit silly as they asked how many carbs can J have per meal and all i have been told is carbs with every meal and then snacks must be 10-15g of carbs. Any advice here would be great.

thanks
Gem


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## Adrienne

Gemma444 said:


> hi bev, carynb and adrienne
> 
> thanks so much for all you help, I'm going to photocopy a few of J's home monitring diary pages at work to give the school as we only have the one diary or get a little book he can take into school.
> 
> adrienne, i can't find that i am rose care plan could you point me in the right direction please.
> 
> I have spoken to the school today as J's b/g was 2.2 before lunch, dont know how that happened!!! I dont think he had his cereal bar for mid-morning snack, yesterday before lunch he was 12.6.
> 
> Also wanted to ask you all how far from diagnosis were you told to give correction doses? We havent got that far yet.
> 
> I will speak to our DSN again after the weekend and explain my worries also the school was asking me about carbs and i felt a bit silly as they asked how many carbs can J have per meal and all i have been told is carbs with every meal and then snacks must be 10-15g of carbs. Any advice here would be great.
> 
> thanks
> Gem




Hiya

Have a look here :

http://www.childrenwithdiabetesuk.org/index.php?page=for-parents

I am Rose is on that page.   You will also find other documents that will help you at school.

Your school seem to know about carb counting - odd.   I wonder if one of the canteen staff have type 1 or live with someone with type 1.    When you are on MDI (4 or more injections) or pumping you have to carb count.   You get so much better control by counting the carbs you eat.   You do not have to have a set amount you just give insulin to cover the amount of carbs you eat.

However your son is on mixes so carb counting becomes hard.   I only know one family that has made carb counting work for them whilst on mixes.   When on mixes you essentially inject a fixed amount morning and night and you then feed the insulin, there is no way around it.   On MDI or pumping you give insulin when you eat carbs !  

So on mixes if you make sure he has the same amount of carbs per meal ie every breakfast have 35 carbs ie 2 weetabix and 200 ml of semi skimmed milk , every lunch have say 50 carbs ie jacket potato or oven chips or mash or 200 grams of cooked pasta but always adding up to 50 carbs and for tea have say 60 grams but every day.

If he eats the same number of carbs per meal and you never stray from that (doesn't matter what carbs at this stage) then you may get ok ish levels on mixes (doubt it but could be worth a try).    I think your best move is just to go for MDI or even better a pump.  According to the NICE guidelines under the age of 12 you do not even have to try MDI, you skip that bit and just go from mixes to pumping.    I would do that.  You will never ever look back and wonder why the hell you didn't make the jump sooner.  However that is your decision of course.

I hope that helps.


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## Gemma444

Hya Adrienne

Thanks for the link i have read it and it is really helpful. Im gonna try and give the carb thing a go, got to try something until mybe they change Jacks insulin. We have woke this morning to b/g of 19.2 and ketones 0.1

Also i just wanted to ask your advise on something. we were told in the next few days to reduce J's insulin or increase if hes going hypo or hyper before lunch, well on thurday he was 12.6 i would have given him a extra unit the next morning but i was unable to get this info from school until friday mid-day so friday morning i gave him his unsual 6 units, now yesterday he was hypo at school before lunch but I havent taken a unit off this morning with him being 19.2. Do you think i have done the right thing? 

gem x


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## Adrienne

Gemma444 said:


> Hya Adrienne
> 
> Thanks for the link i have read it and it is really helpful. Im gonna try and give the carb thing a go, got to try something until mybe they change Jacks insulin. We have woke this morning to b/g of 19.2 and ketones 0.1
> 
> Also i just wanted to ask your advise on something. we were told in the next few days to reduce J's insulin or increase if hes going hypo or hyper before lunch, well on thurday he was 12.6 i would have given him a extra unit the next morning but i was unable to get this info from school until friday mid-day so friday morning i gave him his unsual 6 units, now yesterday he was hypo at school before lunch but I havent taken a unit off this morning with him being 19.2. Do you think i have done the right thing?
> 
> gem x



Hi

The normal pattern for mixes is you are high mid morning and you are hypo by lunch time.  You cannot change that unfortunately.    So this is where snacks are imperative.   Yes you did the right thing definitely but he will need a snack.

Sorry gotta go out.


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## Kei

Hi Gemma!

My 6-year-old daughter was diagnosed in July with type 1 and is on Mixtard 30 twice a day too.  

I'm surprised that you haven't been given more info on carb counting.  While F was still in hospital (she was diagnosed because she had Ketoacidosis, so she spent 5 days in hospital at the start), we had a meeting with the dietician, and she even came out to the house when we got home, to go through the carb counting with us.  She analyzed what F normally eats, worked out her usual carbs per meal, and gave us a plan, which we stick to as well as we possibly can.  It works very well for F.  She has occasional highs and very occasional hypos, but generally stays between 6 and 10.

This is F's plan:

Breakfast - 50g carbohydrates
7:50 - 20 minutes after insulin

Mid-Morning - 20g
10:00

Lunch - 60g - 70g
12:00

Mid-Afternoon - 20g
3:00

Evening Meal - 60g - 70g
5:30 - 20 minutes after insulin

Supper - 20g - 30g
7:00

I'm very strict about sticking to this, and I make sure the school stick to it too.  They've been very good so far.

After a few weeks of this, the diabetes nurses had worked out what seemed to be a good insulin dosage for F.  So far, so good.  I'm just hoping it doesn't all go awry when we come out of the "honeymoon" period that I keep hearing about.

Kei
xx


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## Gemma444

Kei said:


> Hi Gemma!
> 
> My 6-year-old daughter was diagnosed in July with type 1 and is on Mixtard 30 twice a day too.
> 
> I'm surprised that you haven't been given more info on carb counting.  While F was still in hospital (she was diagnosed because she had Ketoacidosis, so she spent 5 days in hospital at the start), we had a meeting with the dietician, and she even came out to the house when we got home, to go through the carb counting with us.  She analyzed what F normally eats, worked out her usual carbs per meal, and gave us a plan, which we stick to as well as we possibly can.  It works very well for F.  She has occasional highs and very occasional hypos, but generally stays between 6 and 10.
> 
> This is F's plan:
> 
> Breakfast - 50g carbohydrates
> 7:50 - 20 minutes after insulin
> 
> Mid-Morning - 20g
> 10:00
> 
> Lunch - 60g - 70g
> 12:00
> 
> Mid-Afternoon - 20g
> 3:00
> 
> Evening Meal - 60g - 70g
> 5:30 - 20 minutes after insulin
> 
> Supper - 20g - 30g
> 7:00
> 
> I'm very strict about sticking to this, and I make sure the school stick to it too.  They've been very good so far.
> 
> After a few weeks of this, the diabetes nurses had worked out what seemed to be a good insulin dosage for F.  So far, so good.  I'm just hoping it doesn't all go awry when we come out of the "honeymoon" period that I keep hearing about.
> 
> Kei
> xx



Hya Kei

We saw a dietician in the hospital for about half and hour but we were not told to carb count. We havent been told anything about carb counting at all. All we got told about carbs is 10-20g of carbs when he has his snacks and J to have carbs with evey meal. The school even asked me how many carbs he could have with one meal and I felt a bit silly as I didn't really know the answer. J's BG are terrible at the moment. They are all over the place. We are trying our best to keep them at a good level but are getting no where. J is no longer on the mixtard 30 he is on humalog mix 25 now as the mixard wasnt lasting until the teatime injection and J's BG was going really high in the afternoon. Think we need to learn about this carb counting and i think it would be helpful. Do you give correction doses yet? 

Thanks for your message.

Gem xxxx


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