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Calling Spidermama: Diabetes

184 replies

LillyPink · 27/02/2006 14:24

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!

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LillyPink · 08/03/2006 09:32

And thanks for your lovely comments! I think the initial shock is wearing off now, as my thoughts are shifting to the future at the moment. I expect that after this stage passes, I will be able to handle things a lot easier. A new way of life, I suppose.

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spidermama · 08/03/2006 21:25

Oh great RachD. I'm looking forward to diabetic camp now.

I saw the school nurse today. It's a routine thing which all the kids do. They just weigh them and ask them if they're OK. The nurse told me she was diagnosed with type 1 when she was 31. She doesn't tell people though. My pharmacist is type one two. It's great to see grown up, healthy looking adults with type 1 diabetes. It really calms me down.

That said ds is still up tonight. He's been really hard to settle. He has fears about world insulin stocks! Things a six year old shouldn't have to be contemplating.

Having said that though I really think it's getting better, slowly. He's a different boy though.

Lilly I heard about Diabetic Camp from Diabetes UK. They run several camps across the country. They may well be full up for this year unless there's a cancellation. I tried to get into the Bournemouth one but it was full.

kid · 08/03/2006 23:02

Spidermama - I just thought I would update you on my nephew that went for tests. He didn't have any sugar in his urine but after they did a blood test the glucose reading wasn't right. The Dr has said he is borderline diabetic whatever that means and he has been referred to a peadetrician. My sister just has to wait and see what happens next. He is only 2.4 Sad

spidermama · 09/03/2006 09:46

I'm not sure what that means either kid. My guess is that he'd be borderline type 2 then because afaik if you're type 1 there's no border left. (The pancreas has stopped working altogether). I'm only guessing though. It's worrying for your sister. He's so young.

LillyPink · 09/03/2006 10:43

Hi Spidermama

Worrying about world insulin stocks! Bless him. He must be a very clever little boy. But you are right, its certainly not a thing that a child should have to woryy about.

Its good to hear he is doing well. How do you think he has changed?

When DD was diagnosed, the doctors asked if she had been ill or tired. I said no, becuase I really didn't think she had. But gradually since starting the insulin jabs, she does seem to be a lot more energetic, especially when she comes out of school. I feel a bit bad for not noticing before.

Also, I feel like apologising for my depressing posts with all the stats on - its not helping anyone going on about stuff like that!

How is your son today? Is he still saying his vision is cloudy?

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LillyPink · 09/03/2006 10:45

I tried looking for info on diabetic camps on their website, but couldn't find anything. Presume they are all booked. May be something for me and DD to consider next year Smile

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spidermama · 09/03/2006 20:26

Hello Lilly,
My ds was the same in that his energy levels really picked up when he started on the insulin and suddenly I realised he'd been pretty poorly but I hadn't really cottoned on. I felt a bit guilty too, but really he had been slowly winding down for sometime.

He's ill today as it goes. His brothers and sister have already had a kind of bug (temperature, sore tummy, headache but no vomitting fingers crossed). I'm keeping him off school today.

Don't apologise for the down beat bits of your posts. It's not a bowl of cherries being dx-ed with diabetes and we have to be able to talk about our fears. It can really help.

In terms of how he has changed, he has regressed a bit in confidence. He hangs out with me more and does less playing with his brothers and sister than he used to. He gets angry or sad very easily, which would suggest to me that he has underlying tension and stress about the whole issue. That said it's early days and he has lots of exciting things to look forward to. Playdates, a wedding, Easter hols etc so hopefully it'll be onward and upward for him.

You're sounding great by the way. Smile

spidermama · 10/03/2006 18:43

Well ... the dreaded vomitting bug has struck. Ds was sick three sick three times in the night and twice during the day. However, his readings have been great all day. Possibly the best day we've had as regards readings.
Figure that one out!

LillyPink · 10/03/2006 22:04

Oh goodness, just what you had been really hoping to avoid. So good to hear that his levels are OK though. I expect you have had a very tiring night and day worrying about him. hope you are OK. How mad is that though? You would expect his levels to have gone sky high!?! I hope he feels better in the morning. These bugs going around seem particularly nasty.

DDs dad has come down with a diorreah bug now, so I am fully expecting DD1 and myself to get it. Fingers crossed though, we'll escape it!!

Had a bit of a nightmare tonight, was the first time I had used a repeat prescription for her monitor kit (the test strips) and turns out they were different to the original ones and her reading was 3.9 Shock. Cue several phone calls to the nursing team to find out if the new strips were compatible with the monitor etc etc. Evidently they are - but they are the older version of the strips and needed a hell of a lot of blood before it would give a reading. DD not happy about that!

What blood monitor kit do you have?

btw, out of pure nosiness, how many children do you have? Sounds like you have got your hands full!!

Have a nice unevenful weekend (ds wise!)

x

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RachD · 10/03/2006 23:01

Dear Spidermama & Lillypink,
There was the most fabulous diabetes article in our local paper today.
I would really like to send you both a copy, in the post.
If you both would like, please send me your address - (Spidermama - the boy in the article was diagnosed at aged 5, now 9, plays football)
to :
[email protected]
Love Rach

spidermama · 10/03/2006 23:16

Thanks RachD, that's really kind. I've emailed you.
The school nurse ds saw admitted to me, in hushed tones, that she's diabetic. I wonder why some people don't want others knowing. I'd be interested how you play this one Rach.

lilly ds is using the Ascensia Contour. We had some odd readings lately and the hospital remined me to get a good size drop of blood so the stick can suck it up without touching the skin ideally. The readings have settled since I put this into practice.

I'm finding potatoes (jacket and chips) seem to send his blood glucose through the roof.

He's been a little bit more cheery lately and less roary. Fingers crossed.

Have a good weekend girls.

ATB x

spidermama · 14/03/2006 23:02

Well ds got the bug properly and had readings yesterday in the twenties all day with two keytones. Just when I thought he'd have to go in to hospital, he's been fine all day today with normal readings again.

Phew!!

I hope your dd is settling in at school OK Lily.

LillyPink · 17/03/2006 09:42

Hi!

Sorry to hear your ds was ill Spidermama! Good to hear he didn't end up in hospital. DD has luckily escaped the sick bug (for now!)

I ahve been doing a bit of reading about diabetes, and am a bit concerned about night hypos. Our nurse said there was no need to check her levels in the night, but the books seem to say otherwise, especialy in these early days. Do you check in the middle of the night?

DD's levels seem to be quite high in the evening and throughout the night for the past couple of nigghts, eg. 12's - 16's.

Its all so bloody complex and I know it sounds bad, but a real hassle. Still, I had the first phonecall from school yesterday - she was low after PE, and though she felt fine her level was 3.4. Hope she isn't one of these people who have no hypo symptoms that she can recognise.

RachD - I'm having probs with my e mail at the mo, so can't send address, but thanks for thinking of me. What was the main jist of the article?

Hope you are all well x

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LillyPink · 17/03/2006 09:44

...how did you manage ds bug Spidermama? Did you have to adjust insulin? Was he managing to eat? You must have been really worried for him.........

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RachD · 17/03/2006 22:53

Hello guys.

Spidermama - about the school nurse - I don't know. Maybe, and I only mean maybe, like me, she doesn't want diabetes to be the most forefront thing in her life. I mean, I don't have it tatooed on my forehead, - I don't meet people and say "Hi, I'm Rachel, and I'm a diabetic. When people show surprise at the fact I am a Diabetic, that makes me happy- because I assume that I am achieving some sense of normality -does that make sense ?

Spidermama - I am surprised that potatoes send ds's blood suger so high - aren't they supposed to be very good GI wise ? -sorry, can't help you with that one.

And finally, I'm so sorry that ds has been unwell. I'm sure it is totally stressful - with blood sugars so high, and haywire.

And Lillypink - I haven't forgotten about you, my love - I was simply addressing issues, in order or postings !
When you said its complex, thats so true, just as you are getting used to it, just as you think you are sussing it out, it all goes "tits up" and you don't know where you are.
I'm afraid thats the nature of diabetes.
And when you say, its a hassle, don't feel bad about saying that - every parent of a diabetic child would admit that its a pain in the f**king arse -if they were truely honest - you have our sympathy, understanding & agreement on that one !!

The article was about a boy aged 5, now 9, who has tried not to let it dominate his life. I have saved you a copy, if you would like. No rush.

Chin up girls - I think you both are doing an AMAZING job - and I really mean that.

LillyPink · 20/03/2006 11:22

Can anyone shed any light on what happens at diabetes clinic? I'm not really sure what to expect, at the moment we are waiting for our appointment date. Do they just talk over her readings and diet and stuff? Will we be in there for a long time?

RachD, thanks for the praise!! I think we are definatly adjusting to DD's diabetes now. I've kind of stopped feeling sad about it, but seem to feel quite angry about it now. She is getting on a lot better with her injections, she has even let her dad do it over the weekend. (though we are still having to inject her legs but the nurse said not to rush her.)

I don't want her to feel any different from anyone else. When she is an adult, she can choose who she tells, as you say RachD, there is no reason the whole world needs to know about it.

As for the night hypos (again!!) I tested DD at 2.30 last night and she was 5.1. Is that OK do you think? She was 4.7 on waking this morning.

Oh and another question - RachD/Spidermama - do you ever need to use the 'quick fix' injections? Just wondering...

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spidermama · 20/03/2006 11:40

Ah hello diabetes thread. Popping up like an old friend. Grin

RachD thanks so much for the article. That was really kind of you. What a great kid eh?

Here's my news. DS had the dreaded bug. He had one day of alarming readings in the 20s and 30s and was reluctant to eat so I was giving fruit smoothies and soup and he was just sipping. It seemed to work. His readings were back under control the following day but the illness took a bit longer to process than it had taken for his siblings. Not too bad though considering this is what I'd been dreading.

Last night his reading was 2.3 but he said he felt fine. Shock He had a big supper and I took it again ... it was 4.5 before bed so I made him eat an apple. It was then 11.7 this morning. What on earth is that about?

I'm trying not to obsess on readings (trying, but failing) because they are quite unpredictable but I'm also very keen to avoid a night time hypo.

Lilly how much does your dd have at night? My ds has 3 units of mixtard. I've never tested him during the night since he was first dx-ed and in hospital.

Lilly I've never used quick fix injections. I thought it might be a good idea when his readings were in the 20s and 30s so I rang the hospital and they said, 'no'. They're much more interested in a longer term picture. It makes me wonder when one would use the quick fix jab. I asked the school nurse (herself a diabetic) and she said one unit of the insulin is supposed to lower the blood sugar by one iyswim.

I've been to one clinic appointment lilly. They just weighed him, did a different blood test which takes a reading averaging out his blood sugar over the past few weeks, and then had a chat with us. My next appointment is in April and he'll be having a test for coeliac disease because I've requested it. Fingers crossed that it's negative. x x

It's a good idea to write down questions in a notepad lilly so you can remember to ask them stuff at the appointment. I always think I'll remember but I never do.

LillyPink · 21/03/2006 07:59

Hi spidermama!

I thought DD was coming down with something yesterday. She was sent home from school with a temperature, and was very reluctant to eat yesterday. However, she seems a bit beter today, so fingers crossed she won't be sick or anything. Her readings remained within normal even though her temp was sky high. Strange.

I am keeping plenty of things in the cupbard though such as soup just in case!!

It must have been so worrying when your sons readings were so high. I'm totally lost as to when we would need the quick fix too. I'll write it on my list of questions!

DD is on 6 units mixtard in the morning and 3 at night, by the way.

2.3 reading Shock dd hasn't gone that low yet.

I don't know if you have read this, SM. Its about night hypos and how they can have them and not realise. Apparantly if they hypo in the night the liver releases glucose so their levels will go up, therefore your morning reading will not be a clue as to what has happened in the night. Some diabetics can wake up with a hangover type feeling due to a night hypo. Though they are rarely fatal unless caused by drinking alcohol. (what a comfort)

I started testing Dd in the night as a couple of mornings she woke up complaining of a headache.

Please correct me Spidermama/RachD if that is wrong.

I'm not sure what coeliac disease is tbh. Is it related to diabetes? I hope your sons test comes back ok, I really do. You have enough to worry about.

take care x

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LillyPink · 21/03/2006 08:23

This is quite interesting:

NEW YORK (Reuters Health) - There may be a silver lining for kids who develop type 1 diabetes at a young age. They seem to be much less likely than children with later onset to develop kidney failure in adulthood, one of the feared consequences of the diabetes, investigators in Sweden report in the medical journal Diabetes Care.

Type 1 diabetes results when the insulin-producing cells in the pancreas are mistakenly destroyed by body's immune system, and it usually strikes in childhood.

In a population-based study, Dr. Maria Svensson, of Umea University Hospital, and colleagues used data from two nationwide registers, which include 12,032 cases of childhood onset of type 1 diabetes, to examine the cumulative occurrence of kidney failure caused by diabetes.

After a maximum follow-up of 27 years, the researchers found that 33 (0.7 percent) of 4414 patients who had had diabetes for more than 15 years developed diabetes-related end-stage renal disease (ESRD), which requires dialysis or a kidney transplant.

There was a significant difference in the risk of developing ESRD between the youngest age-at-onset group (0 to 4 years) and the older groups (5 to 14 years), the team reports. "No patients with onset of diabetes before 5 years of age had developed ESRD."

The researchers note that the mechanism behind the effect of age at onset is unclear. It has been suggested that when diabetes occurs near puberty, the hormonal changes, rapid growth and worsening of blood sugar regulation may accelerate the processes that lead to chronic diabetes complications.

SOURCE: Diabetes Care, March 2006.

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spidermama · 22/03/2006 18:31

That's good lillypink. I'm drinking in anything positive these days.

I discovered through a friend that the dd of another woman from my neighbourhood has recently been diagnosed. Sad Both Mum and dd are taking it very badly. I'm hoping to talk to her but she's not ready. (Her friends tell me). I guess we're all different. I really wanted to find people who were going through or had been through something similar, she seems to want to go inside herself and keep it really quiet at the moment. We're all so different.

I'm hoping she'll want to talk at some point and I'll be here for her when she does. My heart goes out to them both as I remember the early days.

spidermama · 23/03/2006 11:16

I've just heard from a woman who was diagnosed with type 1 at age 7, is now 52 and is leading a very full and active life and has suffered no complications from her diabetes.

These are the stories I love to hear about. Smile

She reminded me of this quote ...
God give me the strength to change the things I can change
the serenity to accept the things I cannot change
and the wisdom to know the difference.

How uplifting.

I think I'm feeling generally uplifted because spring really does appear to have arrived in Brighton today.

xx

LillyPink · 23/03/2006 12:42

Yes it is a beautiful day isn't it! have just been to the doctors with DD as she has a nasty cough, and its lovely out. Funny how a nice change in the weather can boost you a bit!

What a comforting post to read about the woman who has suffered no complications. Its so good to hear stories like that.

I was thinking about how it must have been to be diabetic in days gone by- I mean, can you imagine life without a blood glucose checker? I cant!! I'm very hopeful that our children will also see changes for the better in their mangment of diabetes one day.

I aslo feel for the family you talked about who had just been diagnosed. I suppose as you say, we all handle things differently. It is a big shock, that a lot of people, eg. friends don't appreciate the seriousness of it all. That is why I was despeerate to talk to someone with experience of diabetes as soon as I found out aboout DD. I'm sure she will find your help and advice extremely helpful when she is ready though. I did!!!

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LillyPink · 23/03/2006 12:54

Oh and hooray! She let me inject her bottom last night!! (had to share that!)

Grin
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puddle · 23/03/2006 16:04

Think I mentioned this on spidermamas initial thread but reposting for you lilly. My dp was diagnosed with type 1 diabetes at the age of 20, just before we met so I've never known him without his insulin IYKWIM. He's had no complications so far and most people wouldn't know he has it (although he quite often injects in the middle of cafes etc). He's fit, he runs for 4-5 miles at a time.

I have noticed in the 15 years I have known him that the treatment has improved massively, the insulin/ pens he gets now seems much more sophisticated in terms of the way they work than the needles etc he started out on and he certainly is better controlled now than he ever was, also the medical support seems to be much better. A lot of the horror stories relate to poeple who are not well controlled. I hope that in his lifetime (and certainly in your kids') there will be a cure.

I have had to deal with a few hypos and in my experience they are not scary at all. He just gets very confused and has blurred vision. I can recognise the signs now, just as you will with your children. It's very rare my dp is unaware he is heading for one anyway - this has happened maybe twice or three times in 15 years.

spidermama · 23/03/2006 20:42

Puddle I've heard of so many diabetics who are sporty. I wonder why that is? Perhaps they treause their health more or a more aware of it. What do you think?

Hooray lilly that you've tried a new injection site with your dd. My ds often has that one and it's usually quite good because there's a bit of spare wobble. The skin's a bit tougher there though. I believe you can do it on the hip as well if there's a bit of spare there. Had you heard this?

Thanks for saying I've been helpful. Talking to others, like yourself who truly understand, means a great deal to me. Perhaps the woman up the road will have a chat with me when she's ready. I hope so.

I've been talking to another woman who the diabetic team put me in touch with. She meets other mums and their kids who have diabetes and they go out to, say, soft play areas for a chat. She says the kids all have their monitors out on the table and test their blood together, comparing notes. This I have to see.

We're now in an exclusive club of people with type 1 or people who have a diabetic in the family. Grin I shared a natter with a young woman who works in our chemist. She's type one. Also the school nurse. Now puddle's dh. They're all coming out of the woodwork you see. Wink For me it really helps to meet others getting on with life.