# To all parents on here and on the CWD list



## Northerner (Feb 19, 2011)

I know there are a lot of people on both the forum and the Children With Diabetes website at http://www.childrenwithdiabetesuk.org/. Please don't forget about us here - there is no doubt a lot you can learn, not just from other parents, but people who have grown up with the disease and are now young (or not quite so young!) adults, so please have a browse around all the sections from time to time and feel free to add your comments, experiences or questions!


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## Fandange (Feb 19, 2011)

I absolutely agree! There is plenty to learn from both those going through this now, and from those who have years of experience and have seen the changes in technology ......


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## bev (Feb 19, 2011)

Hi Northerner,

I agree - there is lots to learn from both. I think the problem is that sometimes parents just stick with the list and do forget to come back here - which is a shame as sadly there are always new members looking for advice. Why dont you contact JJ from the list and ask her to put a reminder out to come in here every now and again in case there are new parents struggling.Bev


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## Northerner (Feb 19, 2011)

bev said:


> Hi Northerner,
> 
> I agree - there is lots to learn from both. I think the problem is that sometimes parents just stick with the list and do forget to come back here - which is a shame as sadly there are always new members looking for advice. Why dont you contact JJ from the list and ask her to put a reminder out to come in here every now and again in case there are new parents struggling.Bev



Might be better coming from you bev, as a parent very familiar with both. It would be nice if the CWD site linked to us too - I don't think there is a link there, although there is a link to Shoot Up or Put up.

I don't know, not being a parent, but I imagine that coming here might also be a bit of a respite at times, to be able to let off steam or have fun with people who are aware of the difficulties of living with diabetes, but not necessarily to talk about it, if you see what I mean


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## Adrienne (Feb 19, 2011)

Absolutely agree Northerner, they both have their places in the world of diabetes and mix very well together.


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## am64 (Feb 19, 2011)

Adrienne said:


> Absolutely agree Northerner, they both have their places in the world of diabetes and mix very well together.



Ditto .....as a T2 i had no concept (before joining this forum) of how T1's of all ages , parents, carers, T1.5,mody lada etc etc deal with their particular circumstances  it has been a real education x


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## bev (Feb 19, 2011)

Northerner said:


> Might be better coming from you bev, as a parent very familiar with both. It would be nice if the CWD site linked to us too - I don't think there is a link there, although there is a link to Shoot Up or Put up.
> 
> I don't know, not being a parent, but I imagine that coming here might also be a bit of a respite at times, to be able to let off steam or have fun with people who are aware of the difficulties of living with diabetes, but not necessarily to talk about it, if you see what I mean



Hi Northerner,

I will email JJ and see if she can put a reminder on the list - I dont think its because people dont like it here - I think some just forget as they all make lots of new friends on the list. You are quite right though - sometimes as parents we can perhaps get overly worried about things and it is always refreshing to come on here and listen to the people who have lived with this condition for many years, and always help to reassure us and give great advice and a good laugh along the way.Bev


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## bev (Feb 19, 2011)

Hi Northerner,

I have had a reply off JJ and she is happy to put a link on the CWD site so people can pop by when they want to. She has a lot on at the moment - but has promised to do it next week.Bev


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## Northerner (Feb 19, 2011)

bev said:


> Hi Northerner,
> 
> I have had a reply off JJ and she is happy to put a link on the CWD site so people can pop by when they want to. She has a lot on at the moment - but has promised to do it next week.Bev



Excellent, thanks bev! And JJ!


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## Fee (Feb 22, 2011)

Hi Northern

JJ hasn't posted the link again yet to the CWD website, but I have just wandered over to this list today, I haven't logged in here since last October, so I must've "felt" your vibes!

I must admit though that I find it hard to keep up with the CWD website, nevermind coming on here with lots more information, but I will try and keep more involved with both lists.

I joined this site over a year ago and the CWD site just over a year ago and I have gained so much knowledge.

My daughter who is now 13, she was diagnosed at the age of 9, has had an insulin pump since last April and it has been brilliant. Her HbA1c came down to 7.1 within 3 months. We have clinic tomorrow so fingers crossed all will
be OK.

Intact I  have felt so committed to trying to find the cure for diabetes that I have entered myself for the London Marathon this year for JDRF and I am not 
a runner!

Best wishes
Fee


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## Northerner (Feb 22, 2011)

Hi Fee! So pleased to hear from you again  Great news about the pump and HbA1c, I hope that the clinic goes really well!

And running a marathon! Wow, that's brilliant! You'll love it - don't worry about anything other than drinking in the atmosphere and that wonderful moment when you cross the line - that achievement will stay with you forever, believe me  Hope you raise lots of cash for JDRF too!


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## Ruth Goode (Feb 23, 2011)

I have not forgot you all... we are just busy, mainly to keep Carly busy with her activities.  She loves going to softplay and she is one of the most active and fastest 2 years olds there, diabetic or not


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## MeanMom (Feb 28, 2011)

I find this site to be a much better format (for me)than CWD and often get quite frustrated that more parents don't come on here. Its a bit 'chicken and egg' though, in that until more parents come on here, more parents wont come on here, if you see what I mean


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## Northerner (Feb 28, 2011)

MeanMom said:


> I find this site to be a much better format (for me)than CWD and often get quite frustrated that more parents don't come on here. Its a bit 'chicken and egg' though, in that until more parents come on here, more parents wont come on here, if you see what I mean



I do agree  What frustrates me even more is when I see parents of newly-diagnosed children asking questions on Facebook and I wish they would come here or CWD as well. FB is fine for getting some fairly instant responses, but there is no way (as far as I can see) of having a continuing dialogue via a thread which doesn't disappear after a few hours (apart from the Discussions area which doesn't really get used much at all - everyone posts on the Wall). Also, it's very difficult there for other members to form a picture of the child's history and particular problems.


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## MeanMom (Feb 28, 2011)

Northerner said:


> I do agree  What frustrates me even more is when I see parents of newly-diagnosed children asking questions on Facebook and I wish they would come here or CWD as well. FB is fine for getting some fairly instant responses, but there is no way (as far as I can see) of having a continuing dialogue via a thread which doesn't disappear after a few hours (apart from the Discussions area which doesn't really get used much at all - everyone posts on the Wall). Also, it's very difficult there for other members to form a picture of the child's history and particular problems.



Well said - I came here via FB and have some D Mum friends on there, but as far as I can see it is only myself and Monica that use both (this is better )


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## Adrienne (Feb 28, 2011)

MeanMom said:


> I find this site to be a much better format (for me)than CWD and often get quite frustrated that more parents don't come on here. Its a bit 'chicken and egg' though, in that until more parents come on here, more parents wont come on here, if you see what I mean



Hiya

I think it is each to their own.   I don't think that the two can be compared at all.   For a start one is a forum and you have to go the webpage, the other is emails and you get them coming into your email account.

Some people prefer forums, others prefer emails.    Myself I prefer emails but that is just my choice.

I think people tend to go to where they were first.   I found cwd years before I found here so cwd is where I belong most of the time.  I have helped loads of families on cwd and asked my own questions.  

CWD is just for kids with type 1, so very different than here.   Here there are many more adults, both type 1, 2 and others and sometimes you can only get the advice you want about kids from cwd and not here.   For example the NICE guidance is different and those on cwd are expert on NICE for kiddies especially where pumping is concerned.

For kiddies families there are not DAPHNE (!) courses etc, that is only adults, so we teach ourselves which is why so many of us are adept at doing it as we are self taught and then help the others.    On here many of the adults wait for their course before attempting (not all I hasten to add ) as that is what they have learnt from their teams and so do.

They are different places for different things.   I always advise newly  joined members here, if they are a parent, to look at our website as it is full of info which can actually apply to adults as well as type 1 kids.  I then point them towards the email group.  Most like it as they finally find their place in society.  It really can be that reason.  Some people feel like an oddbod surrounded by family and friends who have absolutely no idea how they feel or what their lives are really like.     Even the really lovely people on this forum have no idea how us mums (and dads) feel, so it is sometimes an emmense relief to be where we are all in the same boat.   It is a bit like we have no idea how the people on this forum feel (unless the mum has diabetes themself of course).   I won't ever pretend to know how they feel, it is totally different to the feelings of having a child with D.  

Having said all that I love this forum and I always tell people I meet, both adults with D and parents with a child with D about this forum and cwd, I always give details out of both.  I think that as a parent we can take a lot from hear how other adults with D cope with things as that will be our child in the future and for me I need to know it is going to be ok. 

I love listening to the younger ones (Shiv, TomH, Sam etc etc) and how they are getting on in their teens and 20's and then others with families etc.   It is a small insight into our child's future.

Obviously technology will have moved on again and hopefully our kids will be involved in all that.

I hope that gives people an insight to the differences that both here and CWD give to me and to others as well.


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## Adrienne (Feb 28, 2011)

MeanMom said:


> Well said - I came here via FB and have some D Mum friends on there, but as far as I can see it is only myself and Monica that use both (this is better )



There are lots of us that use both, just that you don't probably recognise the user names on here.   For example I have no idea who you are as you use MeanMom.   I kept it simple and just used my name so people would know me on both, as has Bev (apart from the fact I have no imagination )


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## Northerner (Feb 28, 2011)

I agree Adrienne - it's good that there are such diverse and valuable resources so people have a choice  of one, the other or both. I always point people at CWD, with the hope that they can find their ideal blend to support their children.


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## MeanMom (Feb 28, 2011)

Adrienne said:


> There are lots of us that use both, just that you don't probably recognise the user names on here.   For example I have no idea who you are as you use MeanMom.   I kept it simple and just used my name so people would know me on both, as has Bev (apart from the fact I have no imagination )



I used to use my real name until i realised that by doing so and mentioning my daughters name i was giving away HER personal details. I do not feel I have to right to do so and so the Mods changed my user name for me. I no longer post on the face book sites with queries I have, although I sometimes try to answer other peoples queries with my limited knowledge. I am sorry if some thought I was critical of CWD - it was not my intention - I did just say I personally preferred this format as I find the threads easier to follow than CWD and there is no privacy on FB.
My point was really that I wish more would use this site not less use other sites


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## Adrienne (Feb 28, 2011)

MeanMom said:


> I used to use my real name until i realised that by doing so and mentioning my daughters name i was giving away HER personal details. I do not feel I have to right to do so and so the Mods changed my user name for me. I no longer post on the face book sites with queries I have, although I sometimes try to answer other peoples queries with my limited knowledge. I am sorry if some thought I was critical of CWD - it was not my intention - I did just say I personally preferred this format as I find the threads easier to follow than CWD and there is no privacy on FB.
> My point was really that I wish more would use this site not less use other sites



Hiya

No worries.

I also hate the fact that people use fb for diabetes care.   I think it is dangerous quite frankly.

Are you in the group someone set up by accident?  I'm a moderator of it.  People started using it for advice so we tried to stop it and we haven't done too back a job.   It is now for happy stuff, or sad stuff or jokes or at the moment (and close your ears all you avid Cameron supporters) we have a lovely photo of aforementioned wally under a lovely shop name. You need to see my profile pic on fb to understand.

I am still no closer as to knowing who you are


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## MeanMom (Feb 28, 2011)

> I am still no closer as to knowing who you are



Thats the idea


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## Gemma444 (Feb 28, 2011)

In still here and still read, just don't post a lot same with the cwd list I read it all the time but don't post much, I do try though. I'm shy lol 

Hope everyone is well? X


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## Northerner (Feb 28, 2011)

Gemma444 said:


> In still here and still read, just don't post a lot same with the cwd list I read it all the time but don't post much, I do try though. I'm shy lol
> 
> Hope everyone is well? X



Nice to hear from you Gemma


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## Monica (Mar 1, 2011)

Well, I do know who you are, MeanMom.The picture gave it away. I understand completely that you want anonymity for K. I started off just writing C and had no photo. But as I'm not mentioning any surnames, I feel it's ok to use full names.

Anyway, when I first joined CWD, I was on the digested version and I HATED it! Now I'm on the proper version I like it much better. I've even managed to change it that all the same email threads go together. But I have noticed that it SEEMS to be a core group posting, with most of them going to UCLH. Not that I care, as I'm learning a lot about pumping (hate the horror stories though) I seem to be deleting a lot of the emails, as they are about meeting up, going to UCLH (what does that stand for?) etc. I've read avidly about the school protocols, eventhough it was for Essex. Now if you asked me to chose between here and CWD, I'd cry and shout don't make me!!!

The only downside of being on here and CWD and FB is, that I spend faaaaaar too much time reading, posting and emailing instead of doing the chores. Hence this post will be my only one for this morning, as I need to catch up with all the work I didn't do last week due to half term hols (I wasn't going to post at all until I read this one).


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## Adrienne (Mar 1, 2011)

Monica said:


> Well, I do know who you are, MeanMom.The picture gave it away. I understand completely that you want anonymity for K. I started off just writing C and had no photo. But as I'm not mentioning any surnames, I feel it's ok to use full names.
> 
> Anyway, when I first joined CWD, I was on the digested version and I HATED it! Now I'm on the proper version I like it much better. I've even managed to change it that all the same email threads go together. But I have noticed that it SEEMS to be a core group posting, with most of them going to UCLH. Not that I care, as I'm learning a lot about pumping (hate the horror stories though) I seem to be deleting a lot of the emails, as they are about meeting up, going to UCLH (what does that stand for?) etc. I've read avidly about the school protocols, eventhough it was for Essex. Now if you asked me to chose between here and CWD, I'd cry and shout don't make me!!!
> 
> The only downside of being on here and CWD and FB is, that I spend faaaaaar too much time reading, posting and emailing instead of doing the chores. Hence this post will be my only one for this morning, as I need to catch up with all the work I didn't do last week due to half term hols (I wasn't going to post at all until I read this one).



Hiya Monica

I can answer these questions and queries.  UCLH stands for University College London Hospital.   About 3 years ago there weren't many who were under UCLH for their care at all.  What has happened is that there are so many really bad disgustingly bad hospitals and care providers for children that those who joined the list read about patient choice and started choosing to move.   Those that can reach UCLH move there for top notch care and those that can reach Leeds go there.  They are by far the best two hospitals in the UK for care for children with type 1.   There are other hospitals who are good as well, they are not all bad.   

That is why there are so many under UCLH.  We don't all know each other.   

As for meeting up, anyone who is local to where someone suggests meeting can go.    Myself and a few others meeting in the south east once in a while, there has been a west London meet recently and a few met up in Essex and a few met in Chichester way I think.   That is why it is a great idea to bunch your emails under subject.    

I have just deleted 1000 emails which I haven't read.   You just can't read them all and I got so behind.   If anyone wants me they will email again so I never feel bad about it.

There are lots from Scotland that post as well actually.

Hope that helps you understand cwd a bit more.


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## Monica (Mar 1, 2011)

Adrienne said:


> I have just deleted 1000 emails which I haven't read.   You just can't read them all and I got so behind.   If anyone wants me they will email again so I never feel bad about it.
> 
> Hope that helps you understand cwd a bit more.



Thanks Adrienne, I won't feel bad for deleting mails without reading them now I know this

Our hospital isn't too bad. In one of the mails, someone posted an attachment about hospitals, can't remember exactly which one. And our hospital was one of the higher % of kids with a HbA1C of <7.2% I know I've ranted about the lack of help to get Carol to do blood tests, but I think our new DSN will be on my side. Carol has her annual next week. So I'll ring her the day before to ask her to tell Carol to do the lunch test in preparation for the pump. Carol will respond much better to outside "nagging". I don't think I'd ever want to transfer to Leeds. I think that's a train ride too far . Well, we'll see how it goes next week.


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