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!

Last nights injection was awful, she screamed the place down and we ended up having to practically pin her down again. We both ended up in tears (though mine were in private!!)

She was a bit more relaxed today and my mum came round on her way to work in case I needed a hand.
Nice to know that just using her thighs is OK just for now til she gets more used to it.

Her bm was 4.9 this morning, the lowest it has been since all this began.

Thanks for the tip Hoxton, have got the fridge stocked with mini cans of coke and will buy some glucose tablets to put in her hypo box.

Am presuming I will have to get another blood monitoring kit to send in to school too.

Lily they wouldn't give me a blood monitoring kit for school but they've told me you can buy them at Boots for about ten or fifteen pounds.

I'm so sorry last night's injection was so awful for you both. I know how upsetting that is. Hang in and it will get better. I remember negotiating for ages with my son before he'd let me do the jab. It helped him knowing his life depends on it (to be brutally frank) but your dd is almost a year younger than my ds so I can totally understand your reticence.

Don't worry about a reading of 4.9. That's totally normal. They say 4 is the floor because they have to stick a figure on it, but anything above four really is fine. I know you're just waiting with baited breath for a hypo aren't you? It's such a stressful wait.

Good luck today. Is she back at school yet? Or are you waiting til next week after you've had your meeting?

Morning Spidermama!

I will have to get down to Boots pronto then! I'll check with the nurse though in case my area would do them on prescription or something.

Yes I am waited with baited breath for a hypo! I am dreading it. Can you describe your sons first hypo with you and what happened (am getting obbsessive here!!!) I know that it will happen at school in the early days and she dosn't restart till Monday I presume, as my meeting at school is for Fri afternoon.

Lily it has all been a bit uneventful on the hypo front. There was no dramatic 'this is it' moment. Just a gradual realisation of fairly subtle symptoms. When he's feeling hypo he says, 'Mum I feel funny. I don't feel well'. So we test his blood and sure enough he's low so we treat it.

I don't know about the school epsodes because I haven't been there. They say he gets stroppy and says he doesn't fee well so they treat a hypo. As they don't have a testing kit yet I'm not sure if these were real hypos.

In short, we've never had a dramatic near-coma experience which is alarming. I expect we will one day. For now though we're learning about early hypo symptoms and how to treat them in a gradual and smooth way. Hopefully your journey will be similar so try not to be alarmed and just accept that you and your dd will learn gradually about this side of life.

I'd love to experience hypo myself so I could understand how he feels. I think the key point is to always take it seriously when he says he feels unwell or if he gets cross and always do a test. Then, if there is a hypo reading, treat it then talk about it. How might it have occured? What did it feel like? I also congratulate him for knowing he felt funny and acting on it.

Thanks SM. I hope I'm handling it as well as you are in a few months. I've explained to her that she must tell me/teacher if she feels funny or unwell, the only problem being she is quite a shy girl at school, so we will have to bring it up again at the meeting. I take it your son was at the meeting too?

btw thanks for ansewring all my questions so helpfully.

Lily my dd used to be quite shy and didn't talk much to teachers. So they gave her a card which meant 'Listen to me. This is serious'.

Perhaps you could suggest a card for your dd which means she's feeling funny or hypo. That would perhaps be an easier way for her to get the teacher;s attention and would mean the teacher would know to pay attention.

Morning to Lillypink & Spidermama.

Lillypink, I can appreciate that hypos are one of your biggest concerns at the moment.
Partly because of the unexpected, and not knowing what it will be like.

I read Spidermamas comments and thought that they were particularly poignant -if you catch the warning signs early enough - i.e. catch the signs of "going low" - i.e. blood sugars going low - then the actual hypo itself is 95 % avoidable.

Saying that, I have had many many TERRIBLE hypos - mostly whilst asleep - when I was not awake , to recognise the warning signs.

They are teriifying.
But I do recover.
Two days later, its as if they have never happened.
And it is my mum and my dh who are both more mentally and physically hurt by my hypos.
I wake up and am generally none the wiser - apparently that is VERY common.

Please take comfort from that.

Morning rachD. When you have a nighttime hypo, you way you wake up and are non the wiser. How do you know you have had it?
Also, what do you mean by 'terrible' hypos? How do they feel?

Sorry about typing. I mean 'You say you wake up and are none the wiser'.

It's confusing as to when to call an episode a 'hypo'. DS has felt a little bit funny and had a hypo reading (the lowest was 2.4) but there's been nothing dramatic to report.

(Gulp!) I'll hold tight for this then.

Sorry for delay in replying - had an interview and some accounts to prep.

Spidermama - it is hard to diferentiate between what I call 'going low' and an actual 'hypo'.
I 'm not sure what the 'official' guidelines are on this.
Also every child / person is different.
Some people have a very low threshold - i.e. they feel fine at blood sugar 2.5, but can practically keel over at 2.4.

There are no set rules, and thus, unfortunately for you and Lilly ( & your children), it will be a learning curve - one child may feel a bit wierd, one might have blurred vision, one might come over all hot or all cold - everyone's symptoms are different.

I REALLY don't want to scare you with stories of my very bad hypos, but please believe me when I say that some of them have been quite horrific - and they are dh's words !!

But, I can tell you, that me personally, it is common for me to have a memory loss - thus I have no idea what happened or what time of the day I went hypo.
I have had fits, like an epileptic fit - throwing my arms around etc.
And I am unusually strong, and my big strong husband has trouble keeping me in the bed.

O.K. enough- I didn't want to scare you - please rememeber that these hypos are very severe and hopefully will NEVER be experienced by your children.

And also remember that however bad they are are, I feel preety rough the next day, but the day after, you could neever know I'd had one - that's important to remember.

Learning the warning signs is the most important thing - that in itself, avoids a bad hypo. And by the sound of it, your son seems to be doing incredibly well recogninsing his OWN !!

Wow RachD. That's very enlightening.
As for learning the warning signs, do you know yours well enough? I've been told that it gets harder to be aware of the signs the longer one has the condition. Would you agree with that?

I hope you don't mine the questions (and on your thread lilly). If you do feel free to ingnore.

Lilly I hope you're OK although I assume you're not as I know how tough it is in these early days. I'm still in the early days myself really.
I remember you have your school chat with the nurse and teachers tomorrow. Bring tissues! All the best. I will be thinking of you. x

Yes Spidermama ( you are so thoughtful) - come back Lillypink, I too can only assume that you are not o.k., because this is such a shock.
Come back, we are here for you.

Spider - I am so in tune with my warning signs it is unreal.
Also, I KNOW what my blood sugars are.
I always predict, before I test, and am very rarely wrong.

However, I have not always been so in tune with my warniing signs.
You can lose them a little.
And then become more in tune with them again.
Or, during my pregnancy, I lost them alltogether - which was part of the reason why my pregnanacy was so hard.

Personally, I don't agree with what you have been told about recogninsing the signs , getting harder , as you get older. No, I don't agree with that. And I don't know any diabetics who would.

But as I said, you warning signs come and go.
Like, I rememember when I was 15, and for about a year, I struggled to recognise my signs.
Does that make sense ?

Morning Spidermama and RachD.

Have been following your posts yesterday but kind of felt at a loss to post. One minute I feel able to take the world on and the next I'm sad, like when I was preparing her hypo box for school last night.

RachD you must be very in tune with your body, can I ask what age you were diagnosed at?

Not looking forward to going to school later. I actually have every confidence that they will look after her, but I just feel scared to think about her there and I won't be there. I wish we could all just stay at home together forever!!

But I know we have to get back to normality...

There was a tricky situation last night for example. She was getting tired as it was coming up to her before bed snack time. I was going to prepare that and get her b/m kit, and when I came back in she was soundo.

Her dad said not to worry and put her to bed. Didn't agree but put her to bed. An hour later I couldn't help but go and test her finger, and her reading was 6.1. So I woke her up and made har eat a biscuit and have a small milk

I was worried that her levels would drop to hypo levels in the night. Was I right to disturb her? She went back to sleep afterwards, but her dad said I was overreacting?

What do you think? I presumed her evening snack was very important and shouldn't be skipped........

And thanks for your concern and thanks for being there!!!

Lillypink , I was 1 and a half when diagnosed.

I understand that you want her at home with you. That is normal.
Is is difficult, when she is out of your sight, at school,etc.
Your meeting is this pm right ?
Hopefully that will make you feel better.

I think you did exactly the right thing last night.
Do not skip snacks. Especially not in these early days.
Normal persons blood sugar is between 4 -7.
Thus, that is why all diabetics strive for 4-7.
Thus, when you tested her, at 6.1, you could have thought - that's fine, leave her, because 6.1 is a very good blood sugar.
BUT, don't forget, bedtime snack, takes you all the way throught the night, until breakfast.
Thus, it is one of THE most important snacks of all.
Is is unlikely, that she would have gone hypo, without her snack, but she possibly may have gone a a tiny bit low ?
Best not to take the risk.
You did exactly the right thing.

Thanks for clearing that up, RachD. That was my thinking behind doing it but he didn't seem to undersatnd.

Wow - it must have been hard going for your mum when you were diagnosed. Does it run in your family? Dds dads cousin is diabetic, but nonone else has had it in his family or mine.

Probably have a nightmare this afternoon at meeting - no one to have DD2 who is miserable with an upset tummy and temperature.

(Something else I am dreading - DD1 getting ill and everything going haywire.....)

Oh well.

It isn't in my family at all.
No idea where it came from.

S-I-L had gestational diabets and then dh became a type 2 !! M-I-L says 'it's all Rachel's fault, she's contagious, we never had it till dh met her !!!!!!'

It was terrible for my mum.
I was in a Coma in Guys hospital, london for months. My mum had to leave my bothers and travel up from Kent.
My first long sentence was " no more pricks mummy, please no more pricks"
and followed by " I hate you"

Terrible for my mum.
She makes my heart bleed when she tells me some of the things that happened.
Luckily we got through it and have a VERY VERY close relationship now.

Things do go a bit haywire wehen unwell.
BUt, the answer is, just to pay more attention, and do more blood monitoring.
Plus, when you are unwell, blood sugars generally go high.
This makes you feel even more unwell and must not be allowed to happen, because it causes long term problems,
However at least it means there is less chance of you going hypo - so I suppose that's something.

Goodness, your poor mum!! Nice that you are close to her though.

Thankyou for the advice re illness. She is rather prone to catching everything thats going round too. Typical.

i have read about the long term damage that can be caused by uncontrolled diabetes, but it was quite scary reading, but I guess I can delve intoit a bit more when we are more 'back to reality'.

In your opinion, do you ever think they will find a cure one day? Or be able to give insulin via an inhaler or something??

Thanks again RachD - you and SM are providing some valuable insights.

Hello girls.
This thread is so enlightening. I'm really appreciating your input RachD. I hope your MIL is joking when she says you're contagious. Even so, not all that amusing I wouldn't have thought. I'm fascinated that you are so in touch with your readings.

Lilly I hope the school meeting went well and that you feel you can trust the teachers. Well done with the snack thing. Here's something which might help - we've put the old baby monitor next to ds's bed so we will hear him if he has any problems in the night (It hasn't happened so far).

At the moment I can't seem to seperate the boy from the diabetes. Every time he's moody or upset I think 'I wonder what his blood sugar's doing' before I think about what might be wrong. I'm never sure what's him and what's his diabetes any more.

So on and on it goes.

Hello again.
Glad to be of assistance.

Lilly - a cure ? not sure. Very little development in that area, and I mean very little development over the last 20 YEARS !!!!
But on day-to-day assistance there have been huge leaps recently - I myslef am on a pump - almost unheard of 10 years ago.
There is the new insulin by inhaler, that is being trialed in the USA at the mo - that looks REALLY cool. I think that will be a very big hit in the UK, very soon.

Spider - the seperation of diabetes from child - I think if you ask my mum, she will tell you that it never goes away.
But, maybe it is supposed to be that way.
I mean - a bit like a newborn - you think is he hungry, nappy,tired - and subconscioualy you eliminate these based on thinking about when you last fed them , changed, then, they slept etc.

O.k. so you have a diabetic child. First things first.
Are thay low.
Do they need food.
Then you run through all the other checklists and eventually, you realise they are just .....
bored - as a child, not as a 'diabetic' child.

Do you see what I mean.
It is hard for you both right now, because it is so new to you.
But before long, it will be second nature and you won't even have to think about it.
A bit like parenting and the newborn.

None knows I am a diabetic, until I tell them.
I eat what I want, do what I want.
I do not have 'diabetic' tatooed on my forehead.
When I start a new job, as I will next week,
I only tell them that I am a diabetic after a week or two.

Most people say " really, I never would have known"
and I say "exactly " -
Thus I have achieved what I want- does that make sense ?

Waiting to hear how lilly's school meeting went.

Rach Lilly has mentioned fears about the long term. I'm also worried about the prospect of long term tissue damage. Are you?

Yes it does worry me Spidermama.
Bad control is very damaging in the long term.
Particularly to the eyes.

Most diabetics have very bad circulation and feel the cold.
Many have strokes.
Many lose limbs - have to have feet amputated etc once gangrine sets in.

God, this depressing , isn't it.
My personal philosophy on my diabetes, is to maintain best poosible control, for tomorrow, whilst still having fun and living for today.
That's just me, personally.

Hi

The meeting at school went Ok. The teachers were very concerned and assured me as best as they could that they would take very special care of her. She can have her blood sugars done if they think she seems low or not herself in any way. The nurse gave them a testing kit. They even said I caould come on a schhol trip as and when!!

I managed not to cry - just looked and felt utterly bewildered....I am worried that if they call me to school when she is low that it will take me twenty minutes to get ther, and if she needs to come home we would have to get a cab. MUST LEARN TO DRIVE-EEK (big fear/lack of confidence) but will make me feel a LOT easier when she is at school. I will feel so far away from her. I am dreading it.

I lay awake for two hours last night just thinking about it!

RachD you are so right. I am telling myself there is nothing I can do about future health issues, except do my utmost to ensure her diabetes is controlled to the best of our abilities.

My mum said when she told her work colleagues about DD a couple of the said 'oh yes, I'm diabetic' - so you never do know really, and why should you?

Spideremama - I look at DD and she is her normal well self and I'm thinking 'whats your sugar levels like....???' If I tested her everytime thought of them her poor fingertips would be red raw!!!

Best be off now - DD has some friends coming round for a belated birthday party. Hope she isn't disappointed at the lack of cakes!!!!

Hi Lilly. I'm glad to hear you sounding a bit more settled. Good that the school meeting went well. It's funny, they wouldn't give my school a testing kit even though the school requested one. It must vary from one health authority to the next. I may just buy a kit for the school because they're a good idea, especially as ds is doing his own finger tests.

I hope your dd has a good belated birthday party. She certainly deserves it. My ds has cake and things at birthdays and parties. The nurses said this was OK as long as he had something good and sustaining beforehand. Now I'm not so sure.