Saturday, 12 September 2015

Preparing for change.

I don't like change! There, I've said it. I like order, I like schedules, I like routine. I don't like not being in control, some may even say I'm a control freak and I would have to agree.
The problem is Samuel is approaching 11 and is in year 6 at primary school....his last year. He has had type 1 throughout his whole time at Westwood Academy, he was diagnosed during the prep group. I have to say the school have been amazing, all the staff know him and he has been well supported.  When he leaves in the summer he will not only be leaving the school, he will be leaving all the support from them. Secondary school is a whole other ball game, the school he will hopefully be going to is huge! This is a big concern for me, it will be much more walking during the day from one class to the the next. What will he do if he feels unwell during lesson time? Who will be there to look out for him?
We went to look round to as it was their open day, my oldest daughter already attends this school so was on hand to show us round. Samuel loved it, and can't wait to go. He wanted to look at the science rooms and the maths rooms. The main person I wanted to see though was the school nurse. I was after some reassurance.
She was lovely!! As soon as I told her he was type 1 she said 'Thats  not a problem we have several diabetics in the school' great start. I then told her that Samuel pumps, her eyes lit up. 'Does he? I've seen one before'  Samuel got the pump out and was telling her all about it. They were chatting away and she said to him 'I can't wait for you to start, I love a new bit of kit.'
I then had a few questions....he gets a medical pass which means he can leave the class if he needs to, he can test whenever he needs to, if he is too low to make his way to the medical room the nurse goes to him. I got my reassurance.
So, in June, before the two day induction we will meet up, I need to tell her what I want and what I expect from them, and she will tell me if it's possible.

The next thing for me to do is release the reins slightly and hand over some of the control to Samuel.....that can wait a few more months though, I'm not ready for that just yet.

Monday, 13 July 2015

Weekend of Heartbreak

Nothing affects the online diabetes community more than the photos of blue candles. This is something that I have blogged about before, however if you are new to my blog or new to the online diabetes community you may not know. The blue candle symbolises the passing of someone due to the mis-diagnosis or the complications of type 1 diabetes.
This weekend saw the blue candle twice.
Firstly for 5 year old Kycie Jai. In January of this year Kycie started to complain of headache, her tummy hurt and she was sick. Her parents thought that she was coming down with the flu. By the end of the week she was worse, she was taken to the hospital with a blood glucose level of 1148 mg/dL, here in the UK that would read 63.8 mmol/L. The bg level should be between 4 and 6, yes you have read that right! On the way to hospital she suffered seizures. The Drs said that she had extensive damage to her brain and the family were told to prepare themselves for her to be severely handicapped if she survived. A fb page was created called Kisses for Kycie where we followed her progress. Kycie was a fighter, she fought hard. Kycie gained her angel wings on the morning of 11th July.

Just as I was hearing this sad news on fb another story flashed up. Another child who showed the same symptoms as Kycie.
David was 4 years old, he presented with the symptoms of stomach flu. His bg level was 775 mg/dL, or 43.1 mmol/L. He went into DKA within 48 hours, when he arrived at the hospital he was in a critical condition and his brain had swelled. David gained his angel wings on 12th July.

This should not be happening, the signs are there, you just need to be aware of them, so consider this a public service announcement.....

These are the signs of DKA and need to be acted on immediately:
Excessive thirst
Frequent urination / bed wetting
Nausea & vomiting
Stomach pain
Extreme tiredness / fatigue
Shortness of breath
Laboured breathing
Pear drop scented breath

There are other signs that may go unnoticed:
Extreme hunger
Unintended weight loss
Irritability / sudden mood changes
Blurred vision
Yeast infections.

When my husband was diagnosed in 1995 he had many of the above symptoms but we explained them away. It wasn't until his vision started to go that we took it seriously. The Dr said he couldn't understand how he was still standing, he was admitted to hospital for two weeks.

In 2009 our 4 year old son started to show symptoms, because we knew the signs we acted fast. He was not in DKA and there was no need for him to be admitted into hospital.

I am thankful every day that we knew what we were looking for, many are not so lucky. Please take a minute to learn the signs.

Fly high with the angels Kycie & David


Saturday, 16 May 2015

Favourites and Motivation.....

We are on the home straight! Two more to go.

This blog looks back at my favourite blog posts. Now this is tricky because I have quite a few. I suppose I should share my first ever blog post. I wrote it like a story, it started 'Once upon a time...' I won't go into details, just click on the link below and have a read.

This is another one of my favourites.....

Actually, you know what I quite like all of them. So pull up a chair and have a read through.

Friday, 15 May 2015

Foods on Friday....

The title on this one says it all really, what does Samuel eat on a typical day? I have to say that in this house we are very much creatures of habit. We eat a lot of the same foods each week, it's easier to plan that way.

Breakfast: Usually he will eat a couple of slices of toast with either peanut butter, jam, or if it's the weekend then the chocolate spread comes out! If he decides it's a cereal kinda day then I'm afraid it's coco pops.

As a rule the children, all four of them don't snack. They have their three main meals and that's about it. Occasionally the biscuits may come out but not all the time.

Lunch: On a school day he tends to have a packed lunch unless it's a Wednesday. Wednesday is roast day on the school dinner menu. His packed lunch tends to be a cheese, ham and cucumber wrap, a yogurt, a piece of fruit, and 'something else' usually whatever I can find in the cupboard, on a Friday I let him take a bag of crisps.

Dinner: One of his favourites is sausage and mash, he also really likes gammon and mash. Actually he loves mash and would have it every day. He also likes pasta bake, a roast dinner, pizza, the list is fairly long. Today though it was inflatable day after school, lots of bouncy castles so we didn't really have dinner. There was lots of picking at picnic food. Not at all healthy today!

He is 10, he likes sweets, crisps and junk food. He loves a burger, and chips from the chip shop, and you know what I let him eat them! Just not everyday.
I generally say to him he can eat whatever he likes so long as I can carb count it before it goes in his mouth.

Thursday, 14 May 2015


Today's topic.....lets talk about changes in one of two ways. Either what you'd most like to see change about diabetes. Or reflect back on some changes that you or your loved one has seen. that I can write with ease.

Lets see......I don't know what it is like in other parts of the world but here in the UK we have a real problem surrounding people's understanding of the different between type 1 and type 2 diabetes. The blame I believe falls mainly at the feet of the media and really poor journalism. Let me give you an example, there is a newspaper front page headline today "Eating eggs reduces the risk of developing diabetes."  Anyone with any knowledge on the subject will know that they are talking about type 2 diabetes as type 1 is an autoimmune condition. But, what about all those people that haven't that underpinning knowledge?  Lets face it unless you deal with it on a daily basis you have no reason to know, and it would be ignorant of me to think that you should know, I mean what makes type 1 diabetes so special that the whole world should know about it? The problem is though is that assumptions are made about people with type 1 and how they came to develop it.
"You must have given your child too many sweets"
"They are overweight"
"They don't get enough exercise"
"You didn't breast feed your baby".
You get the idea, as if us parents of diabetic children don't feel bad enough!

Now if I'm honest I don't often get upset by such comments but I know plenty of people that do. If anyone says anything to me that is factually incorrect I will inform them otherwise, it's not their fault they have been misinformed.
There are calls to change the names but I personally don't think that will do much. What it needs is a little more thought when reporting. It's only a few extra words and it will make the whole world of difference.

The only real thing that I would love to see changed is for people to become more aware of the symptoms, and realise how deadly undiagnosed type 1 diabetes really is. If you were to ask any parent in the UK what the symptoms of meningitis were they would be able to tell you. It's in the red book that is given to new parents when they have their baby. It's the main condition that parents here are scared of, and it kills, but so does type 1 diabetes. Statistics also show that more children are diagnosed with type 1 each year than meningitis and its on the increase in children under the age of 5.  It's a scary thought.

Wednesday, 13 May 2015

Clean it Out.

Here we are with day 3...What is in your diabetes closet that needs to be cleaned out? This can be an actual physical belonging, or it can be something you're mentally or emotionally hanging onto.

Wow, these topics are really getting the old grey matter working.....

Let's see, our medicine cupboard is fairly packed, we have diabetic supplies for the husband. He is on mdi, so we have needles, test strips and lancets for him. The boy pumps, so we have test strips (glucose and ketones), insulin reservoirs, cannulas and batteries. I'm also quite sure in the back somewhere is some glucogel. Also in this cupboard is all the 'other' supplies that you need when you have children. Calpol, plasters, cough mixture, head lice lotion (ewww) the lid is endless. Oh there is probably some hair dye in there somewhere as well.
Shoved in the back of the top shelf is probably every glucose meter known to man. We have loads! None of them work, we have no test strips for them, the finger prickers have vanished, I don't know why we keep them. Also in the cupboard is a fairly large mason jar almost full with used test strips! Don't ask!!! Actually the reason we have this is quite good. I decided to try and get a visual representation of how many times in a year they both test. I started collecting them in January 2014, I'm not really sure where I'm going with it now.
The fridge isn't much better, we have four different insulins all in different forms....we have vials, pen cartridges and pre filled pens. We also have the glycogen injection in there.
Don't get me started on the test strips that don't manage to find their way into the jar. I've found them in my bag, beside my bed, in the car, the garden, the driveway, actually name a place and I've probably found them there!!

As for emotionally, I suppose I need to try and get rid of my anger towards my husband at times. I micromanage my sons diabetes. I weigh food, counts carbs, correct when needed, I work hard! The husband on the other hand doesn't eat properly, has no carb ratios, is not under the hospital, guesses insulin doses and his HbA1c comes in lower!!!! It's not fair!!!

Tuesday, 12 May 2015

Keep it to Yourself......

Day 2 of Diabetes Blog Week....
Well, I thought yesterday's topic was challenging but today's has proved even more difficult. So much so that the day is almost over and I'm only just writing it. Better late than never I guess!
Anyhow today's topic is 'Keep it to Yourself'. This is meant to be about the stories that I will never post online, or things that I don't share with family and friends. The thing is I'm fairly open about my sons diabetes. I don't really hide anything about his condition. If anyone asks me anything I will answer truthfully even if it's not pleasant, I think of it as an opportunity to educate. Knowledge is power!
If anything I suppose the thing I keep hidden is how his diabetes affects me personally. My husband was diagnosed before we got married, he was 23, so I had lived with diabetes in our relationship. When my son was diagnosed I can honestly say I was shell shocked. I mean I consider myself fairly clued up yet I missed most of the signs. Thankfully my husband and I spotted the thirst and as we had the equipment at home he was diagnosed without any real drama. There was so much to learn, taking care of a child with diabetes is completely different to a husband.
To the outside world, the people that know me in real life and online, I take it all in my stride, I'm laid back and don't stress too much about it. I can't change it, I can't take it away, it is what it is. Here's my secret I have days when I feel like I can't take anymore. When the glucose levels are all over the place,  my son is upset and hates diabetes and the whole world, my heart breaks just a little bit more. I suffer from depression, I have been on anti depressants for the last four years. I have days where it takes everything I've got to get up and get through the day.  The biggest thing is I think, is I have control issues, I need things to be perfect, and this condition doesn't really allow 'perfect'. I struggle with that the most, my coping mechanisms are not great but that's a whole other story.

Monday, 11 May 2015

I can.........

This is my first blog as part of 'Diabetes Blog Week', I don't actually know how I stumbled across it, but  here I am. The first topic is 'I can....' and it is looking at the positive side of our lives living with diabetes. Straight away I am stuck, it's tricky as I write about being a parent of a child with type 1 diabetes, I don't have diabetes myself.
I try really hard not to let this condition get in the way of my sons day to day life. He is 10 years old, he needs to be able to live as a 10 year old boy. He needs to be able to play football, run around outside, wrestle with his sisters, and for the most part he does. At the moment it's my job to worry about all things diabetes not his.
I have always said to him that there is nothing he can't do if he really wants to, yes having diabetes sometimes complicates things, but with forward planning most things are possible. He amazes everyday, especially when he is at school. When he was first diagnosed I trawled the Internet for information, I joined forums to find families like mine. The biggest thing that stood out for me was the talk of problems at school. It wasn't just would he be looked after well enough, he wasn't, and still isn't always hypo aware. The thing that jumped out at me more was that many of the children had 'statements', they had 1 to 1 help, they struggled at school. This was something I hadn't planned on,  I didn't want him to be labelled as special needs.
Samuel does extremely well at school, at every parents evening I get told that he is above where he should be, that he doesn't let his diabetes get in the way. He has no issues with concentrating, even when his levels are out of range. He loves all aspects of learning, he also has a great bunch of friends around him, they have all accepted that diabetes is part of who he is, they look out for him.
I suppose that a positive of him having diabetes is that every three months he gets a MOT, a health check. He is weighed, his height is measured, his blood pressure is checked, and once a year he has a whole host of bloods taken. My three girls don't get these checks.
Diabetes has also given us a great network of friends both online and in real life. They 'get it', day or night you can always find someone online with advice. They are a godsend, especially in the early days.
For me personally, diabetes has given me the ability to run. Before he was diagnosed I was overweight, unfit, and could not run at all. I couldn't run on a treadmill for more than a length of a song, and I couldn't see why anyone would do it for fun!! I entered the London Marathon.....don't ask, and ended up with a place on the JDRF team. I ran it (I use the term run very loosely) in 2010. Since then I have completed 1 ultra marathon, 8 full marathons, several half marathons and countless 10k and 5k races.
I've lost weight and I'm fitter now at the grand old age of 40 than I have ever been.
We have a lot to be thankful for.

Saturday, 9 May 2015

The First Sleepover

The day has arrived, I've been waiting for this day since Samuel was diagnosed in 2009. It's the day that every parent of a child with type1 diabetes dreads.........'the first sleepover!!'
Now, I'm the first to admit I'm fairly laid back when it comes to Samuels diabetes. He doesn't get asked often, but when he is invited to his friends for dinner or to play I always say yes. I find out before hand what dinner will be and I work out the carbs so that Samuel can enter into his pump.
Last year he went to the cinema for a friends birthday and he had a great time. There was a lot of carb guessing on my part but it went without a hitch. The way I see it these are isolated incidents, so if it results in some high readings then that's ok. It not all the time and I don't want him missing out on fun times with his friends, a bit of boy time. Remember he lives with three sisters, there isn't a lot of boy time in this house!
Samuel has been looking forward to this for the last week or so.......I haven't!
He got up this morning and packed his bag straight away as I'm sure all the other boys have. We have the onesie, the toothbrush, the clean underwear, the pillow and quilt..... Then of course the blood glucose machine, the ketone machine, spare strips for both machines, juice if he goes low. I did a set change last night and changed the battery in the pump.  I have complete faith in mum, he has been to this particular friends a few times. I think we are set!

Samuel will have a great time, I know he will..... I on the other hand will probably be a nervous wreck the whole night, and a few more grey hairs by morning.

Wednesday, 4 March 2015

A marvellous man.

I can't believe we are now in March of 2015, where does the time go? I haven't posted for an age!
Samuel had his quarterly checkup, we had to cancel the one before Christmas as it clashed with a school trip to the science museum, lets face it that is far more exciting to a 10 year old. We hadn't been since September, and during that time we had had the winter sickness bug, the school holidays, awful bg levels, and of course Christmas itself.
We get to clinic and we are both excited by this as we were meeting up with Samuels pump buddy, the gorgeous Kita and her equally gorgeous mum Magda. We hadn't managed to link up our appointments for ages. Samuels height and weight had both gone up, height by 3cms and he had put on 4lb. Ahhhhh it all becomes clear.. .that is why we have had awful levels. Samuel is called in to see his consultant. This man is a hero among families of children with diabetes. Prof Peter Hindmarsh, otherwise affectionately known as 'The Prof' . He takes one look at his pump and states all Samuels settings are out of date and need changing. Carb to insulin ratio adjusted, Basel rates adjusted, correction dose adjusted. We had a quick chat about the residential trip that is coming up and we were on our way. Oh, side point for those in the know the HbA1c came down!!!
I can honestly say in the four weeks since this appointment Samuels levels have been amazing they have never been so good The Prof is truly an amazing man. The other reason I love this man is that the appointments are all about Samuel, he takes the time to talk to Samuel. I get the boring letters through the post stating all the medical stuff, Samuel gets a letter thanking him for going to clinic and that he hopes he enjoyed the rest of the day, it is all very personal.
Ask anyone who has there child seen at UCLH by this man, or actually anyone who has a child with type 1 diabetes, about him and they will all say the same.