Uk Help please!

[maryh]

Hi my name is Mary, I am in the Uk. Is there anyone out there on this side of the pond. All the web sites I have found are in the US. Our medical treatments are slightly diffrent and I would love to hear from anyone as I don't know many other mums with young kids with Diabetes.My youngest daughter Tegan was Diagnosed a year ago at the age of 6. I feel like I am still swimming in thick mud.

[theo'smummy]

hi i'm from the uk (yippee) my son is 3 dx @22 months old . we had trouble in the beginning but since he has been on the pump all our problems have disappeared








mum to theo aged 3 dx @22 months
mum to sol aged 5 non d

[Angel]

Hiya Ladies

I am from County Durham in the UK. Kieran was diagnosed 4 weeks ago, but it seems now that we have being doing the diabetes thing forever.

Give me a shout if you wanna chat some more.

Angel x

[maryh]

What is this pump everyone is talking about? Is it as good as they say? Where can we find out about them? We know nothing of it. I am still trying to get Tegans bloods to settle, We are now on four injections a day wich is a lot for a 7 yearr old. I know there must be more support out there but we have not found it yet. I just need someone to tell me it will get easier. We are carb counting everything she eats but we are still all over the place. I would love to chat to any one who knows what we are going through..

[malcolm]

Hi Maryh. We come from just up the road ,Aberdeen .I know what your going through ,our daughter (8) has been diabetic since she was 3 so I know how hard it is ,there seems to be a never ending stream of information to take in but try to read as much as you can ,it seems your doing all the right things,it is hard.At first I felt so angry and scared but it does get a bit easier in time.Rebecca has been on a pump for about 5 months now as she was having bad night time hypo's,since she has been on the pump she hasn't had 1 (touch wood) Please feel free to get in touch as I would love to chat .Take care .Malcolm.

[Diane14]

Hello fellow Brits

We live in Bracknell, Berkshire. My dd was dx May 06 has been on 4 a day since Jan this year. Her BGs aren't bery stable either. Though I think most of the day they are relatively ok it is just post breakfast till lunch that is the main problem. I believe that here in Uk you can only get the pump if you cannot sustain good control without regular hypos. As we are still tweaking carb ratios I don't think it will be offered to us for a while. At our last meeting with the dietician, she asked why we wanted to carb count already. They usually let you get used to MDI for a year first! Sounds mad to me. Hannah's shots vary greatly from meal to meal. Sometimes she only needs 3 units other times it is 11 though mostly around 7.

Our consultant said only need to check BG at night if you change the lantus dose, which we can't do without confirmation from nurse. Our American friends on this site seem to check regularly at night though I'm not sure if this is a pump thing.

[Angel]

Kieran takes between 4 -5 shots a day, plus he has the lantus at 6:30. Our consultant told us, we can put him on a pump whenever we are all ready. (But he raises a lot of money for charity to buy these pumps so there are available when they are wanted and no waiting list is needed.)

If I think Kieran is taking too much Insulin (At the moment, his body has kickstarted producing its own again) I just phone the consultant and we drop the doseage. He also allows me to adjust the Lantus glargine doseage depending on the morning BS readings.

It's strange how we all have different way of dealing with Diabetes.

Angel x

[miss_behave]

Our consultant said only need to check BG at night if you change the lantus dose, which we can't do without confirmation from nurse. Our American friends on this site seem to check regularly at night though I'm not sure if this is a pump thing.

Checking at night is not a pump thing. Most parents check at night for several reasons
- diabetes doesn't go away at night, you wouldn't not check for 8-10 hours during the day, so why is it ok at night?
- levels can and will fluctuate at night, growth hormones, delayed exercise lows etc
- there is something called Dead in Bed. It is rare, but a diabetic never wakes up in the morning, presumably from a low they never recovered from

My parents test every night. I have been extremely low for no apparent reason. Luckily I was tested and treated. IMO theres too much risk for dangerous undetected lows at night.

[theo'smummy]

We have found the pump really great at settling theo's blood sugars . Basically he has an infusion on his tummy and it gives a small dose of insulin continually through the day. At mealtimes you need to give a bolus to cover the food he is eating. They don't seem to be that available in the uk at the moment (all down to cost ) .
Angel : your son's blood sugars will be a bit haywire at the moment as it is what they call the 'honeymoon phase' .This should settle down but it does take time. Theo took a while but we put it down to his age (as he was dx at 22 months ) It does get better you are so new to it there is a light at the end of the tunnel.

[maryh]

Thanks everyone I don't know any other parents of d kids so it is great to know we are not alone. My daughter has just been put on 3 injections a day of Novarapid and another of Levimer. It just feels like alot to put her through.
It seems all the d kids in the States are on a pump. Is it the NHS dragging their heels again?

[Amy C.]

It seems all the d kids in the States are on a pump. Is it the NHS dragging their heels again?

You cannot assume from this forum that all Type 1 children in the US are on pumps. There more parents of pumpers who post to this forum than those on shots.

[elisesmam]

yiya im new here too our daughter was dx at 19mths on 21april 2006 she also gets 3 novorapid and 1 levemir. we also asked about the pump and were told she was too young but when you look at the states there are lots of kids her age and younger on a pump. i too feel the NHS dont want to give them

[miss_behave]

I have heard that its very difficult to get a pump in the UK. Pumps are becoming very popular in Australia now, a few years ago not so much. If you have private health insurance here, (even basic hospital cover I believe) they are covered 100%. Pump consumable are subsidised and quite cheap. Apparently in the UK, you can only get a pump covered if you have very poor control on injections.

Most people on this forum's children are pumping because it is the most advanced way to deliver insulin and the fact that the parents are on this forum means that they are good advocates for their children, and have researched and learnt a lot about their child's illness.
In the real world, lots of people are on older, outdated regimens (NPH & Regular, or even mixed insulins) simply because their parents don't care to research and learn the best way to care for their child.

[elisesmam]

our d nurse was keen to give her a pump but when we spoke to our consultant he saidhe only ever had one patient on a pump and they are no longer on it. i then asked if he felt in 20 years time will d still be controlled primarily with shots and he said yes. it seems to me that he is scared to try something new. he seems happy with the way things are just now. the criteria over here to get a pump in the first place seems to me also outdated.

[miss_behave]

Yea, I've also heard no doctors want to prescribe them either! Really strange since most of the medical world accepts pumping as the most advanced insulin treatment. I mean, would they prescribe old treatments for say cancer? I doubt it :confused: they'd want to use the best treatment..

Oh, and you'll find that a lot of the UK parents list has their children pumping, so if you need help in convincing the endo, you might wanna join there and get some tips.

[elisesmam]

we'll be asking about the pump again next appt hope we get a bit further this time. thanks for the advice i will look for the uk list. the more info we get the better armed we are :)

[miss_behave]

The CWD UK parents list is http://mail.castleweb.com:81/guest/RemoteListSummary/cwd_uk

[elisesmam]

thanx very much :)

[theo'smummy]

hello ,
Theo was 2 and a half when we started on pump and i know of children who are younger on pumps , seems like they are fobbing you off( all money related )
The NHS is a disgrace . It should be that all children should have the option to have the pump and we shouldn't have to fight for it.