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Original poster

Diabetes - DS has just been diagnosed ...

220 replies

Millie1 · 21/01/2007 21:54

Am hoping that parents of diabetic children will be able to give me lots of advice and words of wisdom on how to move forward. DS was diagnosed last week and is still in hospital being stablised - DH with him tonight - we're hoping he'll get home tomorrow. Still trying to get our heads around it and get used to the idea. It will mean some changes to our diet and the way we do things but nothing too radical, I hope. Healthier! I'd love advice about altering recipes, suggestions for snacks (after 5 days in hospital he won't even look at a digestive biscuit or toast!) and just any hints/tips I may find useful.

Thanks!

OP posts:

mears · 23/03/2007 17:42

ie diabetes is normal IYSWIM?

tangarine · 23/03/2007 21:17

mears,

Sorry to hear about ds's hypo.

I was at a meeting at Diabetes UK this week. One of the doctors there said that a lot of parents and children with diabetes did not want to be labelled as "disabled". But under the terms of the DDA diabetes is a disability (long term chronic illness of over 12 months duration is the exact definition if I remember rightly). I prefer to think of it as an invisible disability and would be interested to see what adults with diabetes like mm2bys and paddyclamp think.

My ds gets DLA. Lots of other children whose parents post on the CWD email group do as well. Usually the award is for several years at a time. Once they are at school leaving age they have to apply for it themselves. I think you have to have been diagnosed for 6 months before you can start to claim (it takes that long to navigate all the forms ).

mm2bys,

I think I know exactly who you mean. I saw her earlier this week at DUK. There would be no list without this person, a true superstar in my book. I am in complete awe of her knowledge and the sheer hard work she puts into it.

mm22bys · 24/03/2007 13:26

Hi Tangarine,

I am in awe of her too, and we must be thinking of the same person!

We were discussing DLA on another board this week, and for adults to claim it your lives do have to be very restricted. There is no way I could claim it at the moment, and given how restricted your life would have to be I am feeling very fortunate that I don't need it...

I think the policy for parents of children with d is a little less strict, I will see if I can hunt out the thread from the other list...

Spidermama · 24/03/2007 13:43

Hello oblomov,
Yes indeed what a difference a year makes. And yet I'm still learning new stuff all the time.
It was great to chat with you on that thread in the early days. You were very helpful and supportive and I'm grateful to you for that.

I haven't 'seen' lillypink from that thread for ages.

tangarine · 24/03/2007 17:04

mm2bys and mears,

Yes, I wasn't thinking that mears' ds is so much older than most of the children with diabetes I know. So the rules might be different. We test a lot at night/early hours, and as you know the pump takes some intensive management, especially in the early days.

mm2bys, are you by any chance going to the fundraising concert this evening? If so, "see" you there.

mears · 24/03/2007 17:29

I thought that it was unlikely he would be suitable for DLA as he really is managing very well without much supervision at all. It has just been a suggestion made to us by a friend of mine who is a paediatric nurse. I can see why young children and children needing supervision should be entitled to it though.

paddyclamp · 25/03/2007 22:20

I definitely don't see diabetes as a disability and tbh i'd go mad if anyone called me disabled! I'd just say it's a pain in the neck but it honestly doesn't restrict my life.

Don't know any diabetic adult who claims it but think it's quite common for parents with D-kids to get it. Is it something to do with kids needing more supervision?

That said though, if i was entitled to it even though the "disability" label makes me cringe i'd be cutting my nose off to spite my face if i didn't claim it !

mm22bys · 25/03/2007 22:49

I know of one adult-with-diabetes who does claim it, but she is blind so gets it because of that, not "just" because of her d.

I am not disabled either. I know some people think we should "milk" our situation for everything we can, but that can backfire for all of us...

How was the concert, I knew nothing about it...

paddyclamp · 08/04/2007 22:52

How did everyone cope with easter?!?

My blood sugar is sky high! Have done lots of bolusing!

Original poster

Millie1 · 09/04/2007 21:11

Hi Paddy ... too many Easter eggs then??! Are your blood sugars looking better now?

DS is doing fine. He got some Easter eggs but they're being rationed - a bit here and there. Thought he'd be sky-high yesterday but he was hypo at lunchtime and had nice low numbers for the rest of the day even with chocolate. Has been really really active though (new climbing frame!) and I think that's helped keep him so low.

OP posts:

tangarine · 11/04/2007 22:13

Hi paddyclamp and millie,

Ds's birthday is on 2 April so we don't really bother with Easter, as it's always around the time of his birthday. We've had lots of hypos during the day, and shooting up high at 10pm, so temp basals all night long. Thank goodness for the pump. I could change the basals to holiday patterns, but they will just need changing back once he's back at school...

Have eaten lots of rubbish though, just not of the chocolate variety! Today we had crisps, fruit winders and a diet coke on board HMS Belfast - both my boys thought they had died and gone to heaven!

bramblebooks · 07/12/2007 10:03

Hi everyone, I'm a longtime lurker and sometimes poster. I've read this thread with interest and some relief as my ds2 who is 7 has recently been diagnosed with diabetes. It has been a terrible shock, but we're dealing with it. He's swinging all over the place sugar wise, but we're learning what works.

He's still terribly hungry, which is the biggest problem as he just wants to eat and eat, which sends his sugars up at night.

I'm just waiting in for our diabetes nurse to call so that we can iscuss where we're up to.

I have the dla forms - my word what a lot to fill in! Having been up at 4am with him though, I would welcome the extra support.

Original poster

millie1 · 07/12/2007 16:24

Hi Bramblebooks .... sorry to hear about your DS. It's a horrible time when children are dx'd with this - you're dealing with the shock and trying to get your head around blood sugars, insulin and a change in diet.

What sort of insulin regime is he on at the moment? My DS is on 2 injections daily which means we basically have to match his carb intake to the insulin. You might well find that multiple daily injections/basal bolus is more suitable for your son - that way you can at least give him his rapid insulin to suit exactly what he's eating. It does mean more injections each day but people say that it actually gives more flexibility and takes away many of the worries about eating etc.

We found that it takes a while to work out what effect the different foods have and match that to the insulin. Also, as you probably know other factors such as sickness, growth, exercise, excitement etc will effect blood sugars.

You'll get plenty of support here and maybe you'd like to think about the Children with Diabetes mailing list which is just fantastic for advice and support from parents in the same situation.

HTH and keep asking questions cos I'm sure Paddyclamp, Tangerine, Spidermama and quite a few others will see this thread bumped up and give you support & advice also.

OP posts:

monkeybutler · 07/12/2007 17:18

Hi all, \my DH has been type 1 since he was 23. I think he freeaked at the beginning but was diagnosed quickly as he was under 9 stone (is over 6 foot) and his dad and grandad had type 1. He manages very well, and I must say would never eat any of the things mentioned on here. His long term blood level is 7 with a few variations during the day. he has four injectins a day and can eat prcatically what he wants (same healthy eating 'rules' as the rest of us). He is a good healthy weight and attends clinics twice a year. I am in awe of him really.

He just proves to me that you dont have t live on brown rice and oatcakes to survive!. My 3 year old DS has a 5% chance of developing it so I am watching this thread carefully. Thankfully he has the best role model he could ask for in his daddy.!

bramblebooks · 07/12/2007 17:18

Thanks millie. I'll certainly get myself sorted with the mailing list - is that through the children with diabetes website?
What a boon the internet is for helping us to support each other.

He's on 3 injections daily at present, a mix in the morning which gives a background dose for the day and a breakfast and lunch release of novorapid, then a dose with tea and a final nighttime levemir background dose. However, I've been talking to the diabetes nurse about giving novorapid with food during the holidays to match with what he's eating. It's all bit of a blur to me at the moment! Fortunately he's a boy who loves carbs, and although he likes sweets he's accepted that they're really for pud.

School have been brilliant and are helping him to check his bloods regularly throughout the day. We'll get there.

Ah and my dla pack arrived today - that's going to be fun filling in! My diabetic nurse has given us some notes to help us.

Off out to give ds1 some one on one attention - he's been a superstar.

Original poster

millie1 · 07/12/2007 21:58

Monkeybutler ... your DH is the sort of person I like to hear about! What brilliant levels he has

Bramblebrooks ... you will get there. If you go to the main CWD website and scroll about 2/3 the way down, there's a section entitled support. Click on the UK flag and you'll be taken to the screen to join. They are a fantastic crowd and I promise you'll get great advice.

Your son sounds like he's doing well - it's a big thing for any chid to come to terms with, especially testing and doing injections at school. Your DSN might let your change over to the full MDI system - where you would give Lantus or Levemir as the basal insulin and then give the Novarapid with meals/snacks.

Good luck with the DLA pack!

OP posts:

bramblebooks · 08/12/2007 09:05

Thanks. He's not yet injecting at school - one of his teachers is type 1 and has been so helpful in suggesting which snacks to have according to his bm and expected energy requirements.

We're going to go into unknown territory tonight and give a bit of novarapid with his supper - he wants to snack well into the evening which has led to hypers and bedwetting.

Lordy! I need the dla now to pay for all of the extra washing I've had to do.

monkeybutler · 10/12/2007 12:23

My friend at wor as a ds with type 1 qnd she gets like a carers allowance - maybe dla I don't know. DH doesnt qualify as he is type 1 but perfectly well. He does have one small easter egg but so do me and dc's. We have chips twice a week and spuds and asta things the other nights. DS a worry as he doesntlike fruit but is good with veg. I make a big pan of porrige for al 4 of us in morning and we have with bananas. Is very easy and straightforward. DHs condition has made my diet better - it was appaling before I met him. DH still manages a few pints of a weekend too. He makes sure to have a starchy snack and water before bed.

I just wish DH did some exercise, me and kids swim twice a week and I run but he is a bit of a couch potatoe!.

tangarine · 12/12/2007 14:40

Hi bramblebooks,

Sorry to hear about your son's diagnosis. It sounds like you - and he - are coping well. But be kind to yourself. There is so much to get used to to start with that it's all a bit of a blur.

Maybe see you on CWD - there have been a couple of threads recently on DLA forms so if you need some help, just post. And we are organising another camping holiday next May if you and your son fancy meeting some of us in RL.

monkeybutler - it's good to hear about people like your dh when we are struggling through the childhood years and things re so much harder to control. But there is light at the end of the tunnel! And I agree that you don't have to live on health food -as evidenced by my last post back in April . I get DLA for my ds, but it usually stops when they are teenagers.

bramblebooks · 12/12/2007 16:56

Thanks tangarine. Getting through it all slowly, it's tough on him right now. Looking forwards to the Christmas hols.

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