Calling Spidermama: Diabetes

LillyPink · 2006-02-27T14:24:35+00:00

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!

noddyholder · 27/02/2006 14:26

Spider really is the person to help and advise you Her ds has coped amazingly and will really inspire and give you hope All I can do is send my love and best wishes and hope you get the support you need xx

Littlefish · 27/02/2006 14:28

Bump for spidermama.

ruty · 27/02/2006 14:39

she's around here somewhere..

Original poster

LillyPink · 27/02/2006 14:40

Thanks

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Original poster

LillyPink · 27/02/2006 15:31

bump

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Original poster

LillyPink · 27/02/2006 18:12

bump

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Original poster

LillyPink · 27/02/2006 18:24

can anyone else reading bump too please

ta!

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jalopy · 27/02/2006 18:27

bump

geekgrrl · 27/02/2006 18:49

bump

zippitippitoes · 27/02/2006 19:08

hi there just bumping too

spidermama · 27/02/2006 19:16

Ohhhhhhhh Lilly. I'm so sorry. How is she now? Where is she?

spidermama · 27/02/2006 19:23

My ds was dx-ed just before christmas (22nd!) and was also relatively well. They told me most diabetics are in a bad way by the time they come in. His blood sugar was off the scale.

I'm assumeing we're talking about type 1 (insulin dependent)?

Where do you live Lilly?
I'm in Brighton and the team here have been absolutely amazing.

On the bright side, ds is looking so well now two months on. He's bursting with energy and has regained his old athletic figure and energy.

It's a steep learning curve though. How old is your dd again? Is she 3?

Feel free to email me joundergroundataoldotcom any time you want to talk.

I've been thinking of you. x

7up · 27/02/2006 19:59

hi lillypink i was bumping your other message to find out how you got on. sorry to hear your news, glad youve spiderama to support you. hope everything settles down for you once the shock of dd diagnosis has calmed down

spidermama · 27/02/2006 20:21

Oh lilly trust you to post this important thread in the three seconds today when I wasn't on MN.

Original poster

LillyPink · 27/02/2006 23:29

Glad to hear your son is doing OK now Spidermama.

I live near Romford in Essex and DD is five (had her birthday in hospital) We went in straight after docs appointment on Thursday and stayed overnight. She was on a drip for a few hours. On Firday (her birthday) we was allowed home for the night and had to return the next morning for her insulin injection.

We went back and forth for injections and Sunday evening they let us offically go home.

Her levels have been a lot lower today, 9's, 10's and 11. At the moment she is on 6 units in the morning and 3 at night.

There is such a lot to learn though. I am dreading her going back to school. They have been very supportive and have a diabetic child there already so are willing to test blood and give insulin if required.

How many doses does your son have?

Our diabetes nurse is very helpful and nice, but the worst thing is the unpredicability (if thats a word!) about it at this early stage.

Luckily she seems to have handled the fact that sweets will only be a rare treat quite well, though I'm sure there will be a few testing moments ahead.

She is doing very well with her injections, at first we had to basically pin her down while she screamed, but after ten minutes of coaxing her she lets me do it.

We eat quite healthily anyway, but of course it is ensuring that she eats at the right times that will be essential to fit into daily life.

The very word hypo makes me feel like crapping myself. Have you any experience of this with your son?

Personally, one moment I am finding it hard to deal with the fact she has got this for life and it will be a case of constant monitoring and no 'unorganised' days, and the fact of what could happen to her if it is badly managed.

The next moment I am thinking well, there are kids out there with much worse illnesses so I can't get too down aboput it. This is life from now on so just get on with it. I do feel a sense of 'why her?' though.

Thats enough babbling for now, and sorry I cant e mail at present as it is not working but thanks anyway.

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spidermama · 28/02/2006 09:48

Hello Lilly. OMG on her fifth birthday. That's so unfair. That's one she'll not forget in a hurry. We were lucky to get my ds home on Christmas eve'. He was five at the time but turned six a few weeks ago.

The injections and the blood test do get easier quite quickly if my experience is anything to go by. My ds is on 8 in the morning and 3 at night but it has changed so many times over the last couple of months because of the so-called 'honeymood' period which they have probably told you about.

I was dreading my ds going back to school and I'm still not totally happy about it. They have treated him for a hypo several times and I don't like the feeling that he's away from me and having these experiences. He has had hypos, but only in the sense that his readings have dipped under four on several occasions and once as low as 2.4. Nothing dramatic. No collapsing or anything. He just says he feels 'funny' and sometimes a bit weepy. You have to get used to always having a hypo kit with you.

Does you dd know that without the injections she would soon be leaving us? My ds knows this as he heard the consultant telling me. It;s an awful lot for a five year old to get their head around, but it really has helped him to be pragmatic and to accept the insulin without rebelling. It has also led to many fearful nights, which have been really hard and upsetting for all of us.

I know how you feel when you say you're upset about the fact she has this for life now and the sponteniety has gone. It's a life sentence and you and she have to mourn the loss of her perfect health. You will be up and down for sometime to come, the whole family. I know we are!

You're right there are kids worse off, with more debilitating illnesses. I'm grateful I live in a time and place where insulin is available and diabetes is understood so well. There are also lots of changes and our kids will certainly see changes in the treatment within the next ten years and over their lifetimes. I find this quite comforting.

I'm sure some people have already said this to you but Gold Medal winner Steve Redgrave is diabetic, so's Haley Berry. With good management, your dd should be able to lead a 'normal' life.

Feel free to get in touch any time. Like I say, we're still up and down, but it gets easier.

Original poster

LillyPink · 28/02/2006 10:29

Can I when your sons readings dipped below 4, what did you give him? A sugary drink followed by a sandwich a little while after? And you only have to use the gel if they drowsy and confused but are still conscious enough to take it? Did you have to go to the school when he was hypo or did they just deal with it?

I am going in for a meeting with her class teacher, diabetes nurse and office satff this week. I am terrified of leaving her at school let alone getting back to normality with dd2 while dd1 is at school eg going to friends houses/toddler group. i don't drive either.

I have told her that without these injections/snacks she would be so ill that she would have to stay in hospital forever. I couldn't bring myself to tell her that she could die, though its a fact she will know over time.........

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Saggarmakersbottomknocker · 28/02/2006 10:35

Ladies - sorry to hear that you're going through this with your children. Just wanted to point you in the direction of MedicAlert. They do those bracelets with medical conditions - hopefully to give you some piece of mind when they are not with you.

Dd has a chronic condition (not diabetes) and wears a velcro sports strap one, in a trendy purple colour.

Anchovy · 28/02/2006 10:48

Lillypink, I'm very sorry for you. Can I just tell you something I think I also told Spidermama. My grandmother was severely diabetic - diagnosed in the early 70's when everything was much harder - no disposable syringes or fast acting insulin. She used to inject 4-5 times a day. She died 2 years ago aged 93 nearly 40 years afer her diagnosis. Her death had nothing to do with diabetes - just old age. My mother (her daughter) is also an insulin dependent diabetic. She says the changes she has seen in her lifetime are almost unbelievable and she honestly thinks our generation should feel really positive about it. HTH

Original poster

LillyPink · 28/02/2006 11:56

Can I when your sons readings dipped below 4, what did you give him? A sugary drink followed by a sandwich a little while after? And you only have to use the gel if they drowsy and confused but are still conscious enough to take it? Did you have to go to the school when he was hypo or did they just deal with it?

I am going in for a meeting with her class teacher, diabetes nurse and office satff this week. I am terrified of leaving her at school let alone getting back to normality with dd2 while dd1 is at school eg going to friends houses/toddler group. i don't drive either.

I have told her that without these injections/snacks she would be so ill that she would have to stay in hospital forever. I couldn't bring myself to tell her that she could die, though its a fact she will know over time.........

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spidermama · 28/02/2006 14:19

I've never yet had to use the gel. In theory though I know that if he's too drowsy to eat the sugar pill or drink the sugary drink then I have to rub half a tube of gel in the inside of his mouth. Obviously I'm not looking forward to this but at least our kids are so young they'll always have us or someone else with them to help in these early days. Ten minutes after the drink or glucose tablet they have to have a more substantial starchy thing, yes, like a sandwich. The initial sugar burst is to use up the fast acting insulin, then you need something for the slower release stuff to get acting on.

At school it's very important they take him at his word and treat him for a hypo. They have a hypo box on the teachers desk which I keep maintained. It has lucozade (og glucose pills) and a packet of oatcakes to provide the starchier bit. He had several hypos at school in the first few weeks but it appears to have settled. It seems to have been handled well. The school will need to make sure your dd eats her snacks at the right time and has her lunch. I'm lucky my ds is a pretty good eater. It would be a nightmare to have to force him to eat.

I met his teachers along with the diabetes nurse a few weeks ago and I cried. Take tissues along. They were all very understanding but I found it really brought the whole thing home to me. You'll feel better when you have witnessed the whole thing being explained to teachers so they know what to do. You8'll find it gets easier and easier to leave him. It's lucky there;'s another diabetic at her school. My ds is the first at his school and the teachers really knew very little about it. In a way I was glad he had hypos at school because I was able to see that they treated them effectively.

I remember being very stressed the first couple of weeks he was at school. I had my phone with me all the time and really worried about him. I brought stuff to eat for the school run in the afternoon just in case.

These are really challenging days for all of you. Take care and take it day by day and I promise things will get easier - in some ways at least.

Get in touch any time. It's still all so fresh for me too. I'm just trying to fill in the massive Disability Allowance form which is like a book!

Take care x

spidermama · 28/02/2006 14:23

I didn't go into school when they dealt with his hypos and at first I was a bit miffed that they didn't tell me until after because at that point i had never experience a hypo of his and thought it worrying that they seemed to be dealing with so many. As they didn't have a testing kit at school we were never quite sure if they were real hypos or just emotional episodes which are quite understandable given what they're hainvg to go through.

In some ways I wanted him to be as normal as possible at school (he hates to be different) so I wanted them to deal with hypos. I was shocked at how often he was being treated though. Now we have adjusted the insulin and it has eased off.

Remember they do lots of running around at school so it takes a bit of time to work out the regime.

chapsmum · 28/02/2006 14:27

Spidy sorry to interupt, just wanted to say I totally admire how well your coping, your ds is a very lucky boy, and I've been thinking of you

spidermama · 28/02/2006 14:29

BTW the glucose tablets are available at all chemists and are easier to carry around the lucozade etc. They melt in the mouth and get quickly into the bloodstream so I find them very useful. I tend to have a packet with me wherever I go and make sure he has some in his schoolbag. (The challenge then is to stop him from eating them when he doesn't need them.)

spidermama · 28/02/2006 14:30

Awe thanks chapsmum. How nice of you to say. It has all been coming home to me this morning filling in this epic form.
I really appreciate your saying that. (sob, sniff!)