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Fee

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Hi. I'm new here. My daughter was diagnosed with Type 1 just over 2 years ago when she was 9. Diabetes was not in the family so its been a huge learning curve for all of us. Having a tough time at the moment as blood levels are constantly high due to her growth hormone. HbA1c last week was 8.5 so not too good! Saw this site mentioned in Balance magazine and giving it a try out.
 
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hi and welcome to the forum fee we have a few mums in here full of help and knowledge have a look at the parent section and see whats been going on there hun, and hay well done balance getting people in here cant be bad.i recall some one from in here emailing actually
 
Hi Fee, welcome to the forum!🙂 We have a lot of parents using the site and I'm sure they will be more than happy to help you in any way they can.
 
Hi Fee and daughter and welcome to the forum!:D

My son is 11 and was diagnosed 11 months ago - now on a pump and we are going through a huge growth surge too - so i understand how frustrating it can be! Looking forward to reading your posts as your an old hand at this diabetes lark!🙂Bev
 
bev said:
Hi Fee and daughter and welcome to the forum!:D

My son is 11 and was diagnosed 11 months ago - now on a pump and we are going through a huge growth surge too - so i understand how frustrating it can be! Looking forward to reading your posts as your an old hand at this diabetes lark!🙂Bev
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Thanks steff09, Northerner, bev.

This is a great site. Wish that I'd stumbled on it earlier, but I'm here now.

Good to hear that your son is now on a pump bev, I wish that my daughter would have one but she is reluctant. She doesn't want her diabetes to be "visable" ie wearing the pump, and she feels that it would restrict her with the amount of sport that she does.

I will look around for posts re the pump as it is something that I know will be of benefit to her.

Thanks
 
Hi Fee,

I do understand the 'image' thing for a girl.🙂

But as for the sport - mostly A takes his pump off for rugby,swimming and trampolening as he doesnt need the insulin when doing these sports. He keeps it on for football and cycling etc and it has never got in the way - he has a discreet sports pouch which keeps it in place etc..The best thing about the pump is that you can alter your basals before doing sport to stop you having a hypo and for hours afterwards too! I know 3 year olds who have pumps and they are very rough and tumble etc .. they dont seem to bother them either. Has your daughter seen another child wearing a pump? I think this would help overcome some of her fears.🙂Bev
 
Hi Fee, welcome the forum, if you browse around some of the topics you'll see plenty of other parents here, all ready and willing to pass on advice and help through experience.

Hope you find being a member helpful for you and your daughter.

xx
 
Hi Fee,

Welcome to the forum. I was diagnosed when I was a few years younger than your daughter. It's a hell of a learning curve for people like me despite having had it for thirteen years now. Feel free to ask anything that you want to. The vast pool of experience of diabetes as either the parent of a diabetic child or a diabetic themself will beof great benefit for you.

Tom
 
Welcome aboard Fee another parent you guys/gals are amazing, hope you find this place useful! Well I know you will! stick around.:D

Take care

Rossi
 
Hi Fee

My son was diagnosed just over 2 years ago at the age of 10. He has been on a pump since July of this year. We still getting to grips with it but life is certainly easier now with it.

But even with the pump, we get fluctuating levels at times, probably the result of hormones or illness. Diabetes does not stand still, does it? It likes to keep us on our toes! :(

Anyway, welcome and i hope you find the site helpful. I certainly have.

If you want to PM me anytime, then please feel free.

Mand 🙂
 
Has your daughter seen another child wearing a pump? I think this would help overcome some of her fears.🙂Bev

Hi Bev.

Last year, when my daughter had a high HbA1c the hospital put her on a CGMS for a few days. But we had lots of problems with it. It was very painful to put in and then it stopped working over a weekend with nobody to call or help. Ended up having it taken out and then reinserted, but it still kept bleeping at her! It was a really bad experience for her and this has put her off having the pump. She had reservations about the pump before and this unfortunately made it worse. I do know one mum through the hospital whose daughter has been put on a pump recently and she has very kindly offered to show us how it works. I'm arranging a meet up soon and hoping that it will have a positive outcome for us all.
Thanks Fee
 
Fee said:
Has your daughter seen another child wearing a pump? I think this would help overcome some of her fears.🙂Bev

Hi Bev.

Last year, when my daughter had a high HbA1c the hospital put her on a CGMS for a few days. But we had lots of problems with it. It was very painful to put in and then it stopped working over a weekend with nobody to call or help. Ended up having it taken out and then reinserted, but it still kept bleeping at her! It was a really bad experience for her and this has put her off having the pump. She had reservations about the pump before and this unfortunately made it worse. I do know one mum through the hospital whose daughter has been put on a pump recently and she has very kindly offered to show us how it works. I'm arranging a meet up soon and hoping that it will have a positive outcome for us all.
Thanks Fee
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Hi Fee,

I had very similar issues with the CGMS when I was on it about this time last year. That did put me off the pump. However, I do now want a pump having been told by the wonderful people on these boards that pumping is not like having a CGM at all. Perhaps you could ask at your clinic, in much the same way I did, to attend a pump clinic to see how it is.

Tom
 
Hi Tom

Glad to hear that you have made the decision to have a pump. We attended our 3 monthly appointment last week and the pump was mentioned. But until my daughter wants the pump they won't push her, which is great, just doesn't help me as I know that it will be beneficial to her. We also visited the dietician whilst there and we were discussing how best to avoid hypos and raised blood levels after eating Chinese food (Her favourite!). The dietician recommended injecting twice, once half way through and then at end of meal to "mimic" the way the pump would work with regards to releasing insulin. My daughter on hearing this then said that she would NEVER eat Chinese food again if she could only eat it when fitted with a pump! Think that I've got some convincing to do with her!
 
Mand said:
Hi Fee

My son was diagnosed just over 2 years ago at the age of 10. He has been on a pump since July of this year. We still getting to grips with it but life is certainly easier now with it.

But even with the pump, we get fluctuating levels at times, probably the result of hormones or illness. Diabetes does not stand still, does it? It likes to keep us on our toes! :(

Anyway, welcome and i hope you find the site helpful. I certainly have.

If you want to PM me anytime, then please feel free.

Mand 🙂
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Thanks Mand.

Good to hear that the pump is working well. That is encouraging, perhaps we could be joining you in the near future.

I'm sure that I will be visiting here for help and advise often. Still finding my way around the site, so much information. But it's great not to feel so alone in tackling Diabetes.

I'm still trying to control it, not let it control us.
Fee
 
Hi Fee

Just saying hello -- another parent! My son was diagnosed almost exactly a year ago, and is now on a pump -- as you've heard from others, it's life-changing.

I understand your daughter's resistance, BUT does she know what she will be able to do as well as what she won't: eg, eat when she wants and not inject. Have seconds or puddings in other words, and not inject. Not need to decide beforehand what she wants to eat. Take an unexpected walk or shopping trip in, and not risk hypoing -- just put on a temp basal. Etc!

My son's 13 and a half, and just beginning to take real interest in looks etc. BUt he also knows that tonight when he goes out, he can set up a temp basal to try to account for the disco, and wing it! Huge difference.

Welcome!
 
Patricia said:
Hi Fee

Just saying hello -- another parent! My son was diagnosed almost exactly a year ago, and is now on a pump -- as you've heard from others, it's life-changing.

I understand your daughter's resistance, BUT does she know what she will be able to do as well as what she won't: eg, eat when she wants and not inject. Have seconds or puddings in other words, and not inject. Not need to decide beforehand what she wants to eat. Take an unexpected walk or shopping trip in, and not risk hypoing -- just put on a temp basal. Etc!

My son's 13 and a half, and just beginning to take real interest in looks etc. BUt he also knows that tonight when he goes out, he can set up a temp basal to try to account for the disco, and wing it! Huge difference.

Welcome!
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Thanks Patricia

Lots and lots of good advise. Thankyou!!!

Hope your son enjoys disco tonight. Ours is a school fireworks night, but I will be there with my girls so not too much of a problem - apart from them trying to avoid me throughout the evening!

Fee
 
Hi again. I'm not sure where to post this message but I wanted to attach it to the previous messages so that you could all see the thread.

To recap my daughter who is now 12 (birthday Christmas Eve) is interested now in having a pump.

She had a home visit from the diabetes nurse on 23rd November and she said yes she'd like to try a pump out. I was so pleased as I had wanted her to have a pump for ages but needed my daughter to want one.

I got a letter from the Diabetes team the next day giving information regarding the pumps available.

Have done lots of research and went to see a 6 year old girl from our clinic who has had a pump fitted.

Due to Christmas and availability at the clinic the first time that we could make an appointment to have a demo pump fitted with saline is this Friday 15th Jan.

I had a phone call from my diabetes nurse last Thursday to say that funding for her is in place but she is waiting in line with 4 or 5 children before her and the estimated wait is 6-12 months - earliest being June. As you can imagine it's been a bit of a blow as I don't feel as if I can keep the momentum up with my daughter to wait that long! I have only just got her and my husband in to my way of thinking that a pump would be a good thing for her.

I rang John from Input yesterday and he has been brilliant!! He suggested that I go to Leeds for the treatment. I'm not keen to do that as my team here in Derby are brilliant, it's just they lack manpower and time.

I have spoken again to my diabetes nurse this morning and my daughters blood levels are still all over the place. I know that she is hitting puberty and this is why her blood sugars are elevated but we can not get her levels down. This has been happening since her clinic appointment in October (and before then) when her nightly glygene insulin was 13. She is now on 18 with no improvement - infact its actually worse and we will raise it to 20 tonight.

We have been through everything to try and see where the problem is. My only answer would be a pump but I don't think that it would help waiting 6 months plus for a pump/time slot to become available. We carb count every meal and give extra insulin, and even give extra insulin injections with no food.

I feel that as a family we are doing everything we can to bring her levels down and feel the pump is the way forward.

Does anyone have any advise on how best to deal with this situation. And any advise on how to proceed with our appointment on Friday? The appointment on Friday is with the DSN and I have a 3 month appointment with the Doctor in two weeks.

Many thanks
Fee
 
Hi Fe,

Is it possible to get the training and get started on the pump in Leeds and then once up and going continue to be looked after by your team in Derby.

I've heard a few members say this that they have the funding but can't get started because lack of nurses to train them. What needs to happen is employ and train more nurses.

I hope you get a solution soon
 
Hi Fee and welcome to the forum.
 
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