Calling Spidermama: Diabetes

[LillyPink]

Hi

Posted a few days ago about dd drinking and weeing a lot and my suspicions were confirmed, she is diabetic.

Have been in and out of hospital all weekend, and things seem very wierd at the moment, we are trying to adjust to this news.

Her b/m was 30 when she was admitted and the nurse said she was amazed she was so lively!

Would love to talk to you or anyone else with diabetic kids for reassurance and advice etc!

Hello again guys.
Glad school meeting was o.k. - it is a big blessing that the school is supportive.

Just wanted to mention something about birthday cakes and being 'Normal'.

My diabetic consultant, at the time, advised my mum that there was nothing that I wasn't allowed. In moderation. Thus, when my two big brothers had baked alaska, meringues, trifle, etc, I was always allowed a tiny bit.
I was never denied anything.
This made me feel totally normal.
And as I said before, my mums philosophy genererally, was to make me feel as normal as possible.
I did not really resent being diabetic.
Saying that, I did go through a very big rebellion, at aged 13-15, when I hated being diabetic and did hardly any testing etc.

Some consultants / diabetic nurses are very much like my own one.
Some are very strict - i.e no sugar, no this , no that.

Both of you are wondering / querying about whether birthday cakes etc are o.k. - how much sugar, sweets are allowed.
I just wanted to tell you that my moto, is that nothing is denied. Resentment is lessened.

I am not suggesting anything to either of you.
I just wanted to point out that some people take a much stricter line than others.

Hope that is "food for thought".

Thanks RachD. It's a fine balancing act.

Today my ds had rugby training and they give out lollies afterwards. I hate these balls of sugar on sticks at the best of times but they're given by the coaches as a reward, so I felt I couldn't deny him the lolly.
When we got home, post lolly, his reading was 15! Then we had lunch and a couple of hours later, just before mid afternoon snack, it was still 13 so I just gave him one oatcake for his snack. Then two hours later I tested him again before his second insulin and it was 3.8!!! So, even though it was time for his second insulin injection I didn't give him insulin, but treated the hypo with a glucose pill, then twenty minutes later gave him insulin immediately followed by dinner (instead of the usual 20 minute wait.)
I feel I'm making it up as I go along some days.

Do you still have days like this rachD or is your management more settled?

Lilly I hope things are OK for you and that the injections are becoming less traumatic. School tomorrow eh? Good luck with her first day back. Keep your mobile with you. Will the school make sure she eats her snacks? Can she be trusted to remember on her own?

Yes, let us know how first day back at school goes, Lillypink.
It's not even 9.00 am, but I bet you have already worried yourself sick. Poor you.

And how are YOU doing ?

Yes Spidermama, it is such a balancing act, isn't it - that sounds like such an experienced comment, form such a newie - and I mean that as a big compliment.

Sometimes, routine and planning works so well.
And then the next day........
Bang ! Maybe because we things have been going smoothly, that we relax a little bit too much....
or maybe for no apparent reason what-so-ever - it just all goes haywire.

Unfortunatley, I think that is just the way it is.And I just try not to let it upset us (me, dh, ds, my mum etc) and just plod on.
Some we learn from and think, I won't do that again ....
And others are just bad.
Forget it. Let it go. Do not let it get you down. Just accept that some days are better than others, and carry on.

Generally I am quite balanced Spidermama.
And yet, yesterday I went low at sainsburys checkout. Came over all funny, really quickly. And only just managed to grab a 'double'decker' - of course they don't have chocolate at the tills anymore, do they !!!
Why did I go low ?
No idea !!!

Atleast you son is still playing football - so that's cool ?

Morning

Oh God - shes at school. I feel worried sick and ad a terible morning. DD2 was off clour last week with a dodgy tummy and yesterday it developed into her being sick all morning, and slepping for the rest of the day. She was drinking through the night, but this morning was still pale and lethargic. So, feeling I couldn't drag her out in her buggy, my mum came and gave me and DD1 a lift.

By the time she got here we were late for school (I HATE being late) so everything was abit rushed. I've got my mobile in my pocket on the loudest possible volume!!!! Waiting for a call.

I hope DD1 dosn't come down with it. DD2 couldn't keep anything down yesterday - even water.

SM - her teachers assured me that would make sure that she eats her snacks and lunch. I have also told her over and over that she must eat them, or she will feel ill. Her teacher is going to test her at lunchtime today, so that we can guage her her moring went. She was 7.3 before breakfast, and they have fruit at 9, and biscuit and milk at 11, then lunch at 12, and if she is OK in the afternoon, I will give her a snack on the way home from school at 3.

Hope that works OK for her.

With regards to eating birthday cake etc, her nurse said that in small amounts on special occassions will be fine. She could also have a small amount of chocolate say once a week for a treat.

On Saturday, just before her party, she went ever so pale and said her head hurt. Her level was dead on 4, but I treated it as a hypo because she looked terrible and never complains of headaches. By the end of the day her levels were up at 13, and were quite high all day yesterday.............

I do agree with you rachD that you can't completely ban everything, but its quite scary to not have 'complete control' to ensure her levels stay within the norm ifyswim......

She has been invited to a soft play party in afew weeks were they play for an hour fisrt then have burger and chips afterwards. How the hell do I get round that one??? She thought she wouldn't be allowed to go in case the other children caught her diabetes!! I explained that she isn't ill, and no one can catch it, just that she needs her injections to keep her well.

I certailnly don't want her to think she is different from anyone else.

As for me, when she is with me I am OK, but when shes in bed I think about things and actually feel quite down. Life has dealt us a few knocks lately, so I am hoping for a bit of good luck soon

Spidermama, the day you described sounds like you handled it well. Can you still call your nurse if you are unsure about anything?

Blimey that was a long post!!

Also, Spidermama, did you say you had been called the school a few times? What happened when you got there?

(Sorry for the terrible typing in that long post btw!!!)

I don't have diabetes but I have given myself lots of injections for IVF. Just wanted to say that there are bits of me where an injection REALLY hurts and apparently identical bits where I can't feel them at all. If your kids complain that it hurts can you try to remember that spot and try somewhere else next time?

I work with a man who's diabetic and has to inject a few times a day. He barely breaks his conversation to do it - very impressive if a bit freaky for the rest of us until we got used to it. THe only thing he said to us is that if he goes hypo we're to give him the glucose sweets but to be sure he doesn't just tuck them in between his teeth and his cheek. Apparently that's very easy to do and stops them dissolving. He recommended a can of coke, stirred to get the bubbles out.

Hopefully RachD can tell you if this is complete nonsense or worth keeping in mind for your kids. Good luck!

Oh Lillypink, I'm sure it is getting you down, when you have five minutes to actually sit down and think about it.

Unfortunately, this is a very big thing - lifechanging - not just for dd, but for all of you.

We had a hard 2005. Nothing as big as your shock, but just one thing after another. So, I do understand.
And then THIS - on top of everything.

You have our sympathy and support.
And if its any consolation, Spidermama (I'm sure she won't mind me speaking for her) and I , think you're doing a great job, in difficult circumstances.

Her comment about not being able to go to the soft play party, really touched me. Poor little love.
Advice ? A blood test before she goes. Then an extra big snack - taking into account the energy she will use in the next hour. And just a gentle comment, to the parent - i.e. she's only developed diabetes in the last week... could parent ensure she is one of the first to have burger and chips. No caring parent would object to such a request. Then, you know, that she will get food earlier , rather than later - all without any fuss. Does that help ?

Hope the first day passes without you getting any phonecalls from the school!
Before you know it, it will be the end of this week !!!

No GREAT advice eek.
Made me laugh - when a bit low, I used to store glucose tablets and not swallow them - now, I have no idea why I would have done such a thing
and the advice on some injections hurting is very true aswell.

Thanks for the input Eeek!! DD does say that certain injections hurt more than others, and thankfully she is being very brave now and letting me inject her without a problem.

However, she is still only letting me inject her thighs and I am worried about the possibilites of fatty lumps in her legs and the area becoming 'too used'.

Any tips on coaxing her to change sites? I showed her a picture of someone who had injected their tummy too much, so she knows what could happen. her tummy has hardly any spare flesh to inject, and her arms are quite slim too. She won't let me anwhere near her bum!!

RachD thanks for your support, its great to talk to someone with years of real experience of this, not a nurse but someone who has actually (and still is ) been there!! I will probably stay with her at the party - just a very daunting prospect that two weeks ago wouldn't have caused any second thoughts at all. Wierd.

Yes Lillypink - of course you will stay - sorry, I am pushing you too hard - it is very early days and of course you should stay.

Injection sites - that too will come. Don't push it. If thighs are o.k. for the moment, then thats fine. She has two thighs and I'm sure you can persuade her to move it around - top of the thigh on right leg, side thigh left leg, side thigh right leg, top left - that is enough rotation, for the time being.

By the way, have you been told that you can apply for Disability Living Allowance ?
Not for you to think about right now...but up to £200 a month can help.
Just a thought, for you, to consider, at a later date.

Thats OK RachD!! I would probably have stayed anyway as the time it takes to get there it wouldn't be worth going and leaving her there.

I might even give it a test run this weekend to see how she gets on. They run about like maniacs in those soft play places don't they!!

As for the disability allowances, we have the forms to fill in, just a case of getting round to doing them.

I kind of feel like life is on hold at the moment. I had been looking into doing a college course and going back to work once DD2 starts school, but seem to have lost the drive to do it now....still as you say, it is early days atm.

Well, got through yesterday without a phonecall!! I am very on edge today and I think I will be every day til one day they do phone to sa she was low. Its going to happen one day isn't it. Maybe today - maybe next week. Possibly Thursday as she has PE (gulp)

Didn't understand her readings yesterday -

7.5 before breakfast
5.2 at school lunch (asked them to test her to ease my mind on her first day back!)
14.5 before her dinner!!!
So tested her at bedtime expecting it to be high and it was 5.1!!!!???!!

Lilly those readings sound pretty good on the whole. My ds has been 33 before and 25 with no apparent reason. They say don't worry about one off readings but rather look at the overall picture. We don't have many days when all ds's readings are between 4 and 7. You can't let it get to you as long as you're doing everything you can.

I'm glad she's back at school. That's quite a hurdle.

I'm newly worried again today as ds says he often has cloudy vision, so I feel the need to get that checked out really quickly. The worry is never ending. (Big sigh!)

Oh sorry to hear that Spidermama.

Is that a common effect of diabetes? I don't know. I'm sure that he is Ok and your doctor will reassure you? Let us know.

i'll try not to obssess too much about her readings. Its just alarming though isn't it when youv've done everything 'by the book' as it were. Still I suppose the honeymoon period could have something to do with erratic readings?

Must write a list of questions (as long as my arm!) as our nurse is visiting this week.

I think we are going to be constantly worried for the rest of our lives, Spidermama.

(That post ended on a depressing note, didn't it!)

Bloody hell - the average life expectancy for a diabetic person is twenty years less than that of a non diabetic.......... so that is 60???? I can't bear to think about all this...No one had told me that.

It also said that there has been a steep rise in type 1 in the under fives, WHY? I hope there wasn't anything I could have done to prevent this (am being stupid I know) but can't understand why there would be a steep rise in type 1.

That was off a document by Diabetes UK btw.

Day by day I am reading more about the complications especially in later life, and am shocked that so many things like strokes and amputations are increased by so much by having diabetes.

I know quite a few dibetes patients as I have a consultant for my kidney transplant who also does diabetes.Some of them are way over 60 and there was an elderly gentleman that I used to type his poetry for the radio who was diabetic and he was hopeless with his diet etc and had other health problems and he lived to 79 so everyone is different I think those worst case statistics are for people who really don't manage it well

Thankyou NH. I hope that is the case, and I intend to make sure she controls this well when she is older too!! Wow a kidney transplant, hope you are doing OK.

Also read this on there:

Type 1 diabetes
While the genetic aspects of Type 1 diabetes are very complex, on average:
• If a mother has the condition, the risk of developing it is two to three per cent.
• If a father has the condition, the risk of developing it is eight to nine per cent.
• If both parents have the condition, the risk of developing it is 30 per cent.
• If a sibling develops the condition the risk of developing it is ten per cent (rising to 15 per cent for a non-identical twin and 40 per cent for an identical twin).

So her sister has a higher chance of developing it now than if me or her dad were diabetic...great.

The risk of her not getting it is 90%!Try and think positively I know it is hard but it is best to try and live in the day and not look too far ahead.My doctors and nurses call me the eternal optimist not sure if they are being sarcastic but it works for me.

Hi Noddy. Wise words. Thanks so much.

I think she's right lilly. I get so down when I look at the possible long term prognosis, but there's no point because, as noddy says, there are so many examples of people leading close to normal lives. The most frustrating thing for me is the lack of control. People talk about good management but if the readings are all over the place despite good management where does that leave us?

I note you're like me lilly, reading up as much as you can. I wanted to know as much as I could in the first few weeks. I've cooled off a bit now as I'm still finding it confusing. For example, you'd assume, wouldn't you, that if one has a high blood glucose reading it would be a good idea to do high energy excersise to use up some of that blood sugar but no. That seems to push the level even higher. The body releases more to cope with the exercise. So why, then, do we give a sugary snack before hefty bouts of excersise if the body is going to release it anyway? Very baffling.

My ds has had some high readings today. I'm finding atm my mood is pretty much dependent on the extent to which I'm managing to control his BM.

BTW lilly, have you heard of diabetic camp? RachD have you ever been?
I'm booked to go to one in the summer. DS is really keen to meet other people dealing with the condition.

I have to say lilly, you're sounding fab. I hope it continues. You sound like just the sort of mum a dd would want on side at a time like this. x

Spidermama - diabetic camp (I went on two or three, I think) was the best thing EVER.
Just being with others who truely understood, was great.
Doing normal things with zero fuss.
And I always leant alot.
Some of my happiest times EVER.

I'm sure your ds will LOVE IT !

Yes, thanks NoddyH. It is very true what you say. And there are much worse things that could happen too.

Spidermama - I am finding the whole thing baffling. I too am finding that if her readings are OK, so am I. But if they are higher than should be I feel ever so anxious. I mean, how long can a diabetic go on having high readings before damage is done??

I've never heard of diabetic camp before. What does that entail?

I'm also living in hope that one day they will have some sort of scientific breakthrough, or whatever, that means our kids can have a better quality of health when they are much older. I mean its 2006 for gods sake.

I wonder exactly how much money is spent on research into causes and treatments/managing of diabetes?