recently diagnosed 22 month old

[Helen Nurse]

Hi there, I was wondering if I could establish some contacts with other parents in the same position as us - Daisy was diagnosed last Sept with type 1, she is now 22 months, so we are facing the usual toddler issues with addition of type 1 - main issues we are facing at the moment are her levels being all over the place, lots of night time lows and inconsistent eating - trying to persuade a toddler to eat when she is learning how to say now and assert herself! I would really like to talk to other parents in the same position or who have been through similar to learn from your experiences and have a bit of support Thanks so much.

 

[Northerner]

Hi Helen, welcome to the forum 🙂 Sorry to hear of Daisy's diagnosis. What insulin regime is she on? We have many parents here who will be happy to share their experiences with you. You might also like to look at the Children With Diabetes website at http://www.childrenwithdiabetesuk.org/ - they operate an email list and have over 400 parents of Type 1 children there. Many of the forum parents are also on there, and I'm sure you will get a great response for any questions you may have.

Also, I'd recommend you get a copy of Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas, if you don't already have one - considered the 'bible' for Type 1!

Please feel free to ask any questions you may have, nothing is considered 'silly'! 🙂

 

[Fandange]

Hi Helen, and welcome to the forum.
Northey's advise is right on track. CWD is a group of parents who can share their experience and knowledge and support one another - I'm sure you will get some answers there.
My kids are a bit older than Daisy, but I understand the stress and worry of the highs and lows, and the midnight wrestle for a blood test. Try not to worry, there is a lot to learn and you have come to a great place full of genuinely caring people who can make you laugh and listen to you when things are all going wrong!
Take care, and keep smiling, and when you have a bad day, ask about the chicken in shorts.....

 

[bev]

Hi Helen,
Welcome to the forum - although sorry you have to be here.

http://www.childrenwithdiabetesuk.org/

Join the above and you will be able to speak to parents of a type 1 child from all different ages and will get lots of advice - lots of parents on here are members of both the forum and the list - so dont feel bad about joining up.🙂Bev

 

[Adrienne]

Hi there, I was wondering if I could establish some contacts with other parents in the same position as us - Daisy was diagnosed last Sept with type 1, she is now 22 months, so we are facing the usual toddler issues with addition of type 1 - main issues we are facing at the moment are her levels being all over the place, lots of night time lows and inconsistent eating - trying to persuade a toddler to eat when she is learning how to say now and assert herself! I would really like to talk to other parents in the same position or who have been through similar to learn from your experiences and have a bit of support Thanks so much.

Hi Helen

So sorry to hear about Daisy. I understand and have been there with my daughter at that age as well. She is now nearly 11 and thriving and going through the 10/11 year old hormone thang........ lovely !

We were under Great Ormond Street Hospital and we were told that because a child is growing especially these young ones that you will be hard pushed to get great levels all the time. They were happy with any readings under 15.0 mmol for us. However this was 10 odd years ago and times have changed so much in such a short space of time.

It all boils down to regime and what your hospital are doing to help. I am crossing all my fingers about the answer to my first question to you. What regime are you on? Are you one twice daily or MDI (multiple daily injections with Lantus or Levimir and Novorapid) or a pump?

Two out of three are ok, one is sooooo not ok for a youngster. I'll let you know which is which when you answer.

The cwd link you have been given is fantastic (as is here). There are lots on that email group who have children the same age as Daisy or others like me who have been there and got that t shirt so can help.

Take care and nice to meet you. 🙂

 

[Helen Nurse]

thank you

Thank you for your replies and advice. I have signed up to the CWD mailing list and so am now getting those through which will be useful - although there seems to be so much on there that I have no idea what is being talked about!!
I have that book and think its great, so thanks for that.
Daisy is on 2 injections daily - morning and tea time. We have only had one meeting with our consultant so far (other than when we have been in on the ward) and I talked to him about a pump and he said he would recommend staying as we are for now and considering the pump option when she starts school. What do others think about this?
Thanks again and look forward to knowing you all more, Helen x

 

[bev]

Thank you for your replies and advice. I have signed up to the CWD mailing list and so am now getting those through which will be useful - although there seems to be so much on there that I have no idea what is being talked about!!
I have that book and think its great, so thanks for that.
Daisy is on 2 injections daily - morning and tea time. We have only had one meeting with our consultant so far (other than when we have been in on the ward) and I talked to him about a pump and he said he would recommend staying as we are for now and considering the pump option when she starts school. What do others think about this?
Thanks again and look forward to knowing you all more, Helen x

Hi Helen,

I would ask the same question on the list as there are lots of children on a pump the same age as Daisy and some of them were younger when they started on a pump. I dont see any reason why Daisy should wait until School at all - it would be better to start it when she is this age as she will be so used to it that she wont question it. Two injections a day are not really very effective as you just cant get good control with them. They are now being phased out in many clinics as they now know that they just dont work for most. Have you said 'hello' on the list yet - it would be nice to see you there.🙂Bev

 

[Ruth Goode]

Welcome to the forum, Im sorry about Daisy I know what you are going through or feel as my daughter Carly was dx last June at 23 months old and now it is over 8 months so any question or anything you need to know, just ask us 🙂 br strong x

 

[Adrienne]

Daisy is on 2 injections daily - morning and tea time. We have only had one meeting with our consultant so far (other than when we have been in on the ward) and I talked to him about a pump and he said he would recommend staying as we are for now and considering the pump option when she starts school. What do others think about this?
Thanks again and look forward to knowing you all more, Helen x

Oh dear. I guess honesty is the best policy here. I think this is a cop out on the part of your consultant. Daisy needs the best possible regime now so that her start into diabetes is as best it can be. Unfortunately (and being completely brutal here) you will not get that on twice daily mixed insulins. If Daisy had been born in Europe she would be on a pump or MDI (multiple daily injections) from the minute she was diagnosed, they did away with mixed insulins a while ago. You cannot get control with them. You are forever chasing insulin rather than making the insulin work for you.

Not great.

It is much much better to get a pump now or even MDI (but pump is first class, whereas MDI is second class and mixeds aren't even on the scale ) before school so that you (1) give her the best start in life and (2) so that she and you are used to it and know what you are doing and can train the school on the basis of what you know. If you wait and she starts school sometimes it is hard to get a school to do what you want.

Does your hospital actually do pumps? If not then you can move hospitals very very easily.

 

[Helen Nurse]

thanks Adrienne, that is really helpful. We are with Warrington and the consultant did say that they don't have the resources or training to be able to offer the pump straight from their unit - he admitted to not being trained in them. I posted about this on CWD too and from the amount of replies I got about the fact that it would be far better for Daisy to be on a pump and that we could actually move hospitals (which I hadn't realised we could) so we have now decided to go for this and I am seeing the GP tomorrow to request a referral, so hopefully the ball will start moving for her to have a pump. thanks, Helen x

 

[bev]

Hi Helen,

I hope your GP agrees to refer you - well as you now know - he cant refuse - but hopefully he will sort things out soon.🙂Bev

 

[Adrienne]

thanks Adrienne, that is really helpful. We are with Warrington and the consultant did say that they don't have the resources or training to be able to offer the pump straight from their unit - he admitted to not being trained in them. I posted about this on CWD too and from the amount of replies I got about the fact that it would be far better for Daisy to be on a pump and that we could actually move hospitals (which I hadn't realised we could) so we have now decided to go for this and I am seeing the GP tomorrow to request a referral, so hopefully the ball will start moving for her to have a pump. thanks, Helen x

Fantastic. I thought I saw you over there on the old cwd list. I get so flipping confused as to who I have 'spoken' to and who I haven't. I may well have replied to you over there as well duh !

Well done though and I personally think a great decision.

🙂

 

[gem123]

hi nice to meet u i was born in warrington and most of my family still live there i live in northwich now so not far from you!
my lil girl was three last june when she was diagnosed a little bit older than your little one. its a horrible illness and hope you find support on here or the cwd

my daughter is on mdi so i dont have any advice for you r.e the pump but well done for fighting for it and hope you get things sorted soon and her levels settle 🙂)) xxxxx

 

[ruthelliot]

Hi Helen,
I'm late to this thread so in terms of advice nothing I can add but well done for acting on the advice you did get. Our son is almost 4 and was diagnosed at 18mths and we are just now about to start pumping after a long fight and changing hospitals. Even on mdi we struggled, at times a lot. I found like you normal toddler issues were much more of a problem and the last thing I wanted was food to become the centre of our lives or a bargaining tool for a frustrated 2/3yr old! MDI I believe offers hugely more control and flexibility than twice daily and I'm hoping the pump will take us to a different level again - I live for the day we can be as rebellious as not having lunch bang on 12.30! Anyway good luck and keep us posted how you get on.
Ruth

 

[Gemma444]

Hi Helen

Welcome to the forum, can't offer anymore advise but glad to see that you are
thinking about changing hospital to get the best care for daisy. My views on mixes aren't good. My son was on mixes for 6 months or so and with the help from Bev and adrienne we got jack onto mdi and things are so much better. Luckly our hospital is getting rid of mixes and putting all children on mdi just no signs of them getting pumps yet. Good luck with your GP.

Gem x

 

[Helen Nurse]

moving to MDI

Hi Ruth and Gemma
Thanks for your posts here. Would be great to know more about your experiences. We are about to move to MDI now we have started our quest for a pump, so I'm sure I'll be bac to you with lots of questions once we move on to this - it's got to be better than mixes though! Thanks, speak soon, Helen

 

[Ruth Goode]

Hello Helen,
Carly was on two insulins a day and her level went up and down like a rollercoaster, it was not good and hard to control so 3 months later she started MDI and carb-counting, her level is much more settled. It was quite hard at first with carb counting and adjusting her insulin, etc but I got used to it now.
Now with Carly I can say MDI is better for her, by the way it is only been nearly 9 months for us 🙂 Good luck

 

[Helen Nurse]

We have started learning about carb counting but I know that when we start the MDI in a couple of weeks we're going to have to be much stricter about it - how do you do that, especially when you are out and about for example if you get a sandwich in a cafe or fish and chips in a pub and its difficult to know exactly what type of bread it is or how much batter the fish is in etc. It seems there is so much variation - and also some guides seem to say one thing and it is another somewhere else - for example in our collins carb guide it says that 75g of grapes are 10g carbs, so we weighed out them which were 15 grapes, but then in our booklet that the hospital had given us it said that 10 medium grapes were 10 carbs - I thought the ones we weighed were medium sized, so which do we believe? How strict are you and what information do you follow?

 

[Gemma444]

Hi Helen

Jack was on mixes for 6 months or so. I knew nothing about mdi or pumps until I came here. We had a horrid time with mixes levels always to high esp at night and me ringing the hospital all the time. I spoke to jacks dsn who was lovely and moved us onto mdi asap. Thing got so much better.

Some things You may find useful are the carbs and Cals book via amazon. It's a visual guide with pics of meals and how many carbs they have in them, they also do a iPhone app if you have a iPhone i would defo suggest you get the these, its about 4.99 for the app. The book is more expensive though but well worth it. I also use the salter 1440 nutri-weigh scales either from eBay or amazon. They have food stored in the menu that you select and it tells you the carbs. Saves the maths, I use them alot. Also the Collins gem book is good too. I would put up links but I'm on my phone so can't. Hope this was useful.

Gem x

 

[Northerner]

...Some things You may find useful are the carbs and Cals book via amazon. It's a visual guide with pics of meals and how many carbs they have in them, they also do a iPhone app if you have a iPhone i would defo suggest you get the these, its about 4.99 for the app. The book is more expensive though but well worth it. I also use the salter 1440 nutri-weigh scales either from eBay or amazon. They have food stored in the menu that you select and it tells you the carbs. Saves the maths, I use them alot. Also the Collins gem book is good too. I would put up links but I'm on my phone so can't. Hope this was useful.

Gem x

Here are the links:

Scales (the 1440 model doesn't seem to be available any more, so this is for the 1406):

Salter 1406 Nutri Weigh Slim Dietary Computer Scale

Carbs and Cals

Carbs & Cals: A Visual Guide to Carbohydrate & Calorie Counting for People with Diabetes

Collins Carb Counter:

Collins Gem - Carb Counter

🙂