# Is there any parents.



## sasha1 (May 14, 2009)

Hi all. 
Just wondered if there were any parents on line at the moment?
Thought it would be nice to ask how we all getting on with our kids? and how we were feeling? Its easy to get caught up with our childrens demands and diabetes, and forget about us?
Hope that doesnt sound selfish..sharing things sometimes helps.

Heidi ​


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## Becca (May 14, 2009)

Hey heidi, how you doing?  I'm shattered tonight, Rose's levels are manic at the mo.. think an illness is on the way   How are things with you?


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## bev (May 14, 2009)

Hi Becca and Heidi,

Becca its Bev from CWD! For some reason i cant send a message on the other forum - it tells me to verify account by signing in again - but when i try nothing happens? Any ideas whats going on? Hope Rose is feeling better? bev


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## Becca (May 14, 2009)

Hi Bev

You can't send a message on CWD?   Can you email Jackie and see if she knows, i wonder why that's happening?  Can you see the emails though?


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## bev (May 14, 2009)

Hi Becca,
I can see the emails, but when i try to reply to any it shows a box at the top in yellow saying 'verify your account' to prevent spammers.When i click on it- it just stays like that - its as if it freezes? Bev


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## Becca (May 14, 2009)

Eek!  Hope it's not a virus!  

You might have to get a new email account and resign up?  Mind you, can you send mails to other people - or is it just the list?


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## sasha1 (May 15, 2009)

Hi Becca,
Things ok with me and Nath at the moment, however he running quite low at the moment,and having hypos at night. Adjusted long acting and short acting before tea, but i think it the Lantus, he been on it for nearly 12mts after his specialist changed it from Levemir. But we battling on haha.
Hope your little lass is ok today?
How do you rate the pump out of interest?

Heidi, mum to Nathan 'Kevin the teenager' dx feb 2007  Novarapid and Lantus


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## Becca (May 15, 2009)

Hi Heidi

I cannot put into words how the pump has changed Rose's and our lives as a family around for the better!!!   I know though that everyone is different and the pump may not suit everyone, but for us it's been amazing.  It's given us back control; given us our lives back; given us spontaneity and freedom that we had lost; we can relax more and bizarrely we feel like we can breathe.

She was originally put on 3 injections a day, and it was disastrous, swinging blood levels, feeling out of control and not having a clue what to do were daily issues.  MDI was not much better.  

We feel like we have been reintroduced to our little girl.  She has more energy, is happier and brighter.  2 weeks into pumping I can remember commenting to my husband that her behaviour was so out of character.  She was constantly chatting, lively, and cheeky and I felt sorry for her poor brother as she was constantly chasing him around!  It came as a shock that when it slowly dawned on us that this was the real Rose ? who wasn?t being suppressed by swinging blood levels and generally feeling groggy.

I could go on and on but only if you want lol!!!  Won't bore you otherwise  

Again, i'd say that for us the pump has transformed our lives because injections just couldn't work for Rose.  However, i know that injections can work for others - it is what works best and quality of life thats the important thing


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## sasha1 (May 15, 2009)

Hi Becca, 
I am really pleased for you and your family that the pump is working excellent for Rose. I bet it such a relief for you to feel as though you have your special little girl back, and your life, its great to hear such a positive feed back. 
The idea has been mentioned to Nathan and myself about a pump, but unfortunately Nathan is'nt willing to discuss the matter with his medical team at the moment. Just at this time he not open for any discussion regarding diabetes he's bored of it all and wants it to go away. That I can understand fully. All I can do is be the person he vents his frustration on.
There is a big push going on in our area, for more children to be using the pump..so hopefully more parents will take up the opportunity. 
 Nathan had a really bad week, with one thing and another, all I can say thank god its friday..cause im shattered.
 How does Rose get on at school, have the teachers etc been helpful?

Heidi


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## Becca (May 15, 2009)

Hi Heidi

The school that Rose is at now is absolutely fantastic.  The one before was awful 

They look after her so well and see her as Rose that needs that little bit more help.  They bolus for food; treat hypos; test her bloods; do corrections; set temporary basals on the pump etc. etc. And most importantly they treat her with respect.   We are very very lucky to have found them.


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## sasha1 (May 16, 2009)

Hi Becca
 Thats brilliant, I really wish more schools would adopt that attitude,and such a relief for you as a parent that she is taken such good care of and most importantly respected
 Schools here a very hit and miss in there care and consistancy. Nathans is'nt one of the best, and have had to deal with various issues, not just for nathan but the several other children who attend. Most recently when Nathan was late for school due to having a hypo..I phoned school to explain..1 teacher decided it was'nt a realistic excuse....needless to say after a conversation with me, he changed his mind..haha.
 Heidi


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## Northerner (May 16, 2009)

sasha1 said:


> ...1 teacher decided it was'nt a realistic excuse....needless to say after a conversation with me, he changed his mind..haha.
> Heidi



Whilst I wish no one ill will, that teacher ought to experience a hypo, then he'd be in a position to make a judgement on it!

Becca - so great to read about Rosie and how much the pump has transformed her life - it must make you so happy! And well done to the school too, great to hear of a good experience amongst all the (sadly) mediocre or poor ones!


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## Becca (May 16, 2009)

Wasn't a realistic excuse! Blimey, what are they like?!

Glad though you were able to explain and they 'understood'

I so know what you mean about schools being hit and miss.  Rose's old one (2 miles from her present one now, under same LA and PCT) wanted her to be able to do her care at 5 years old?! That's why i am ever indebted to the school she is at now as they are just fab.  

Northener - You are so right, we are so happy with the pump - on injections, life was pretty dire, Rose's bloods would swing from 5mmol/L into mid 20s within 2 hours and back to 5mmol/L or hypo in the next 2 hours.  We tried every regime you could think of....she must have felt awful...but now


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## caringmum (Jun 7, 2009)

HI Heidi,
i am new to this site, but i am feeling alot better for listening to your comments.  I am interested in my little girl having a pump.  Over the last two years the injections have not made any difference to Steph's levels.  She is always in the 20 's at teatime and if we adjust the lantus or fastacting slightly its lots of hypos.  Steph has been really poorly with this bowel problem which started at the same time she was diagnosed.  We took matters into our own hands and after 10 plus clear outs and lots and lots of movicol, we decided to take her off the movicol and stick to a high fibre diet.  At the moment its working.  I still believe the bowel problem is connected to Diabetes, she never had a problem before she was diagnosed.  Steph is like an athlete, always on the go and amazing strength.  She only weighs 3 1/2 stone and is 8 yrs old.  Even though she does her injections herself now the school will not help.  I still go up every lunchtime and trips etc.  I believe the pump will give her a better quality of life.  I always have her friends around to play the other parents are a bit frightened of the kit and what might happen.  I am lucky i have got my daughter of 17yrs who has helped myself and my husband so much.  I am going to ask at our next appointment how we go about getting a pump.  I will raise the money if i have too.  I would like to meet other parents with children with pumps and help Stephanie make the right choice for her.  She constantly complains about her fingers hurting and her little arms and legs are covered in bruises.  Sorry for all the information but this is the first time i have been able to speak to someone using a pump.  Thankyou for the information.  Elaina, mum to Stephanie (8) Novorapid and Lantus


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## Mand (Jun 7, 2009)

Hi Caring mum

My son is 12 and going on a pump on 7th July. Feel free to send me a private message anytime. Happy to exchange support with you.


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## sasha1 (Jun 7, 2009)

caringmum said:


> HI Heidi,
> i am new to this site, but i am feeling alot better for listening to your comments.  I am interested in my little girl having a pump.  Over the last two years the injections have not made any difference to Steph's levels.  She is always in the 20 's at teatime and if we adjust the lantus or fastacting slightly its lots of hypos.  Steph has been really poorly with this bowel problem which started at the same time she was diagnosed.  We took matters into our own hands and after 10 plus clear outs and lots and lots of movicol, we decided to take her off the movicol and stick to a high fibre diet.  At the moment its working.  I still believe the bowel problem is connected to Diabetes, she never had a problem before she was diagnosed.  Steph is like an athlete, always on the go and amazing strength.  She only weighs 3 1/2 stone and is 8 yrs old.  Even though she does her injections herself now the school will not help.  I still go up every lunchtime and trips etc.  I believe the pump will give her a better quality of life.  I always have her friends around to play the other parents are a bit frightened of the kit and what might happen.  I am lucky i have got my daughter of 17yrs who has helped myself and my husband so much.  I am going to ask at our next appointment how we go about getting a pump.  I will raise the money if i have too.  I would like to meet other parents with children with pumps and help Stephanie make the right choice for her.  She constantly complains about her fingers hurting and her little arms and legs are covered in bruises.  Sorry for all the information but this is the first time i have been able to speak to someone using a pump.  Thankyou for the information.  Elaina, mum to Stephanie (8) Novorapid and Lantus




Hi caringmum,

Firstly, you are not on your own,  I really feel for you, diabetes is a terrible condition..and hard for us parents emotionally and physically. The thing is you've come to the forum and there are loads of parent's on her in our situation..mot only that but a few teenagers that will no doubt prove a valuable source when we are going through the teenage years...nath has already hit 14 and a right Kevin the teenager..He uses the same insulin as your daughter Lantus and Nova rapid. Now regarding a pump...the best person to approach on this site is bev..she is a mum like us...also waiting for her son to be selected for pump...bev has valuable knowledge on this..if you see her online please pm her...she is lovely..nothing is too much trouble for her...she also attends DUK meetings and provides us who cannot attend with information on all the topics covered..Also if you ever need to chat I'm usually not far away...please feel free to pm me anytime...
As for your daughters problem with constipation...there is a link with this and diabetes...I have a large book..which I call my Bible on Diabetes..I will look this up and post on her what it says..

Heidi


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## sasha1 (Jun 7, 2009)

Mand said:


> Hi Caring mum
> 
> My son is 12 and going on a pump on 7th July. Feel free to send me a private message anytime. Happy to exchange support with you.




Hi Mand...

The same goes for me to..feel free to pm me anytime...I will do all I can to help and support you

Heidi


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## Mand (Jun 7, 2009)

Thanks Heidi! So good to have your support. You feel free to pm me too!


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## bev (Jun 7, 2009)

caringmum said:


> HI Heidi,
> i am new to this site, but i am feeling alot better for listening to your comments.  I am interested in my little girl having a pump.  Over the last two years the injections have not made any difference to Steph's levels.  She is always in the 20 's at teatime and if we adjust the lantus or fastacting slightly its lots of hypos.  Steph has been really poorly with this bowel problem which started at the same time she was diagnosed.  We took matters into our own hands and after 10 plus clear outs and lots and lots of movicol, we decided to take her off the movicol and stick to a high fibre diet.  At the moment its working.  I still believe the bowel problem is connected to Diabetes, she never had a problem before she was diagnosed.  Steph is like an athlete, always on the go and amazing strength.  She only weighs 3 1/2 stone and is 8 yrs old.  Even though she does her injections herself now the school will not help.  I still go up every lunchtime and trips etc.  I believe the pump will give her a better quality of life.  I always have her friends around to play the other parents are a bit frightened of the kit and what might happen.  I am lucky i have got my daughter of 17yrs who has helped myself and my husband so much.  I am going to ask at our next appointment how we go about getting a pump.  I will raise the money if i have too.  I would like to meet other parents with children with pumps and help Stephanie make the right choice for her.  She constantly complains about her fingers hurting and her little arms and legs are covered in bruises.  Sorry for all the information but this is the first time i have been able to speak to someone using a pump.  Thankyou for the information.  Elaina, mum to Stephanie (8) Novorapid and Lantus



Hi Elaina,
I am on another forum just for children - its called childrenwithdiabetes (thinkits .com or .org - i will check). Anyway there is a mailing list full of mums in our position! We all help answer questions etc - and i met them all on a caravan holiday in May - 40 type1 children! About half were on pumps - and this has spurred us onto tryng to get one for Alex. The control seems much better and the child gets more freedom. Your little girl could go to a friends house for tea and they could ring you and let you know the carbs and she can just enter the amount and the pump works it all out for you. There were 3 year olds who understood how the pump worked - i was amazed! Try to join the other forum aswell as i know you would benefit from talking with other mums. There may even be some from your area that you could meet up with etc.. Bev


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## Mand (Jun 7, 2009)

Hi Bev

What is the website address of the other site you are involved with? It sounds interesting! Would love to take a look.


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## sasha1 (Jun 7, 2009)

Hi Mand,

The website address is,  www.childrenwithdiabetes.com

Heidi


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## bev (Jun 7, 2009)

This is a thread the one of the ladies off the other forum put on so i just copied it for you - for a bit of background! 

Heidi, have you had a look at it yet?  Bev


I keep posting this link so thought I would start a new thread on it so people can find this link. 

I am one of the original members of the UK Children with Diabetes Advocacy Group. We all have children with type 1. There is an email support group which is phenominal. It is certainly my lifeline. 

We have a website which has been written by parents for parents. It tells you the things that the medical experts don't tell you ie DLA, cinema card passes, the NICE guidelines, glucagon in schools, pumps etc etc. It also has lots of care plans which can be used for schools etc. All schools should have a details care plan for your child.

The website is www.childrenwithdiabetesuk.org 

Take a look and if you want to ask me any questions whatsoever feel free.

If you want to know a bit more about me then my daughter's story is on another website www.hi-fund.org under Children's Stories under Jessica. She is nearly 9 so the story needs a bit of an update.


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## sasha1 (Jun 7, 2009)

Hi bev,

I registered with cwd, just before joining this forum, but for some reason I can only access the american site, and thats where I'm registered.

I'm going to try and re-register..or set up another account for the uk site...

Im not good with this technology....

Will also follow that link you've just mentioned, I spotted it a couple of weeks ago when you posted it...got side tracked...as us mums do.....

Hope you and alex well

Heidi


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## bev (Jun 7, 2009)

Heidi, when you join - make sure you click on UK and then on the left hand side there will be a section called 'mailing lists' and click on that. You will get a lot of emails  - about 20 ish a day - but just delete them. Just introduce yourself and a brief story of you and Nathan, then you will get lots of welcomes and your in! If your having trouble i can ask Adrienne how she got me in and i am sure she will help you to do it! Bev


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## sasha1 (Jun 7, 2009)

bev said:


> Heidi, when you join - make sure you click on UK and then on the left hand side there will be a section called 'mailing lists' and click on that. You will get a lot of emails  - about 20 ish a day - but just delete them. Just introduce yourself and a brief story of you and Nathan, then you will get lots of welcomes and your in! If your having trouble i can ask Adrienne how she got me in and i am sure she will help you to do it! Bev



Thanks bev...your a star...going to do that tomorrow.


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