Incorrect advice drives us potty!

For those of you that don't know there are two main charities that support diabetes. Diabetes UK, which everyone seems to know about, and the lesser known JDRF. Now, JDRF is my charity of choice, and I know that this is also true of most of the parents of type 1 children that I know. They deal with type 1 diabetes and are committed to finding a cure for our children.
Diabetes UK however, get us parents very cross. Never more so than when they make statements such as (I can't remember the exact quote) if you suffer a nighttime hypo, your body will respond and you will wake up. That was the just of it anyhow.
However, on Wednesday husband had to wake Samuel (he had had a slight lay in) he had a blood glucose of 2.9! He was hypo, he was not waking up by himself.
It doesn't bare thinking about what could have happened. Children and young people are dying due to dead in bed syndrome, which is thought to be caused by low blood sugars. Personally I think it is irresponsible to make such brash statements, dead in bed syndrome cases are rare, but that do happen, and parents should be told. It's not nice but you can't bury your head and pretend that it doesn't happen.
We are JDRF all the way...hope is in a cure.

Christmas 2011........we won!!!!

After the horrific numbers that diabetes dealt us in the last few days at school it was safe to say that the thought of dealing with it over Christmas left me with the thought of impending doom.
Samuel had had two Christmas parties at school, where like children do when given the opportunity, they stuff themselves with chocolate and biscuits. This had resulted in an evening of horrific numbers and a three hour wait for them to drop!!

Ask any parent, Christmas can be a nightmare. Too much food, eaten at completely different times, overindulgence of chocolate and all those goodies. Throw in type 1 diabetes and you have a whole lot of trouble on your hands.
Christmas morning started as you would expect in a flurry of present unwrapping and excitement, this obviously resulted in a delay in breakfast. I waited with baited breath to see the starting number, the number that would set us up for the day. There was the worry that the excitement may have made it rise....but no...we were in luck..7.9!!!! As Samuel would say....'back of the net!!'  This was a fantastic start to the day.  Christmas breakfast was no different to any other day so there was nothing to worry about.  I thought it may go slightly wrong around dinner time. Usually Samuel will have lunch at 12pm and dinner at around 5pm. However, I had planned to have dinner at half one, and tea at around half five. This could have proved disastrous I had expected hypos before dinner then  a rebound high, but no...none of that happened...level before dinner...5.7!! Another fantastic number. I decided to let Samuel eat his dinner first and give him his injection before his dessert, which actually seemed to work out fine. His level before his tea was 9.8, granted it was the higher end of good but still under 10 which is what I had hoped.
Samuel had a good day, he ate the same as everyone else, which included chocolate, candy canes, cheesecake, cheese, crackers and probably his body weight in pringles, but he stayed under 10, and no hypos!!! So, I  have a message for diabetes, you may make things more difficult for Samuel and the rest of us, I may have to carb count his food, and inject him four times a day, but you didn't spoil his Christmas did you!!!!!! He still had fun, we all did!!! Ha!!!

Merry Christmas everyone xxx

It's so important to know the signs.....

Due the sad news that another young life has been lost to undiagnosed diabetes I feel that we need reminding what type 1 diabetes actually is and it's symptoms.

Type 1 diabetes is an autoimmune condition. It is NOT caused by lifestyle habits and CAN NOT be prevented or cured by changes to diet or exercise.

A normal healthy body will keep blood glucose levels between 4 and 7 mmol/L (UK measurement) Insulin is the hormone that moves the glucose from the bloodstream into the cells where it can be used for energy. In type 1 diabetes these levels go outside the normal range. This is because there is either not enough insulin or none at all.
When these levels go too high the body will try and get rid of the excess glucose in the following way.
*The body will firstly try and getbrid of it by pushing it out in the urine, this results in the need to go to the toilet more often.
*Because of this there is an increased thirst.
*As the cells aren't getting the energy that they need tiredness occurs.
*The body still needs energy so it will begin to break down fat stores which results in weight loss.
*If this carries on for any length of time a build up of ketones occurs. These are toxic to the body and can cause the breath to smell of pear drops, stomach pains and ultimately loss of consciousness.

So, a recap... The common signs and symptoms are...

*Increase urination
*Increase thirst
*Tiredness
*Weight loss
*Ketones.

These symptoms occur rapidly, if left untreated death can occur, it really is as simple as that.
Numbers are rising at an alarming rate, with the fasted increase in the under 5s. More children are diagnosed each year with type 1 diabetes than meningitis...FACT..

Please learn the signs and you may just save a life!

World diabetes day....who knew?

Today is the last day of Novemeber, this means that Diabetes Awareness Month is drawing to a close. You know that well known cause that we all know so much about, the fact that World Diabetes Day, celebrating the birthday of Frederick Banting, the man that discovered insulin, was on November 14th. The day when public buildings we lit up in blue lights to show support and raise awareness.....
Yes, you're right it didn't really happen in the UK, and this begs the question....why not? Why does no one know about it? Everyone knows that October is breast cancer awareness month and we are all 'tickled pink'
I have a few American 'friends' on fb, and it was lovely to see buildings, and fountains in Florida all lit up in blue. Most of us within the online diabetic community changed our profile pictures, we posted 30 facts for 30 days, but it really is preaching to the converted. What can we do to change it? In all honesty I don't know the answer, I don't know why it is not recognised in this country. What I do know though is it needs to change, so we need some ideas.
If you did something for World Diabetes Day post a comment, as I am truly interested in what you all did.

Diabetes Awareness Month 2011...

The 1st of November marks the beginning of diabetes awareness month with the 14th being World Diabetes Day. Apart from the families that contend with this condition every day how many people actually know. If the truth be told we didn't know until our son was diagnosed and my husband has had type 1 for 15 years!

In order to do my bit for raising awareness I am now going to dazzle you with numbers.....

In one year alone Samuel will have had at least 1,460 injections of insulin. This figure does not take into account and correction dose or any split doses.
With only the minimum of testing, and by this I mean before breakfast, lunch, dinner and bedtime, he will have 1,460 finger prick tests. Add onto that tests when he doesn't feel well, or before exercise and the number is much higher.
If Samuel lives to 70 years old he will have had in his lifetime in excess of 96,360 injections!!

Samuel hardly ever complains about having his injections, and insulin is not a cure, it is life support, without it he would die. However, with every injection my heart breaks just a little, but I know I have to do it to keep him alive.
Please help to raise awareness of Type 1 diabetes, the numbers are rising......Hope is in a cure.

Why is there so much misinformation?

Every once in a while something comes up, or is said which upsets us parents of children with diabetes. Usually it is an off the cuff comment, such as 'is it the bad type of diabetes?' and we know that it is not meant with malace. However, if the person who said it stopped and thought about what they were saying they would understand why we get upset. That said it is apparent to me that the general population who don't live with this condition truly don't understand how serious the condition is, and actually it isn't really their fault. This is because there is so much misinformation out there in the public domain. You only have to think back to the recent diabetes awareness campaign where Llyods pharmacy failed to distinguish between type 1 and type 2 diabetes. What do you do though when your 8 year old child, who has diabetes brings home from school their reading book, and in this book there is a character called 'Sugar Free Sean.' The child in the book has diabetes, hence the name, and is bullied. He has his lunch taken away, and thrown down the toilet, and is kicked. If that wasn't bad enough, the book is full of medical inaccuracies, such as 'he was hypo on the toilet floor, so they fetched his insulin kit!!' If you give insulin to a person who is hypo you could kill them!!! Obviously the mother of the child, and the child himself were upset by what they were reading. So quite rightly have complained. It was also mentioned on a FB page and also on an e mail list. So, once again the CWD parents sprung into action. We e mailed our schools to ask if the book could be removed. We e mailed the publishers of the book and some contacted the author. This got me thinking, how did a book with so many inaccuracies get published in the first place. The author surely should have researched the subject. It must have been passed to proof readers, shouldn't they have picked up on it? What about the publishers themselves, surely Oxford University Press have a duty to ensure that the books that they produce are factually correct. In response to the complaints OUP are recalling the book, and are going to work with CWD to insure that they get the information correct, but what about the children who have already read the book to their parents? This is part of the reason why there is such ignorance surrounding type 1 diabetes. The general public are constantly misinformed. It doesn't happen with other conditions, and we really need to change that. So, I will continue to write this blog, and run marathons.....whatever it takes to get the message across.

D-GAP: The Results!

As I have mentioned in a previous post my girls are part of the D-GAP trial. I have also mentioned that Olivia, my oldest daughter tested positive for two or more of the antibodies, this means that she has a 1 in 5 change of developing type 1 diabetes within the next 5 years. Victoria and Elizabeth were both tested back in July, and I have been waiting for the results ever since. The results came yesterday........ Both girls........negative, this means no antibodies. Clearly this is a good result for them, nothing is ever certain, and we can never say never, but it's unlikely that they will develop type 1. However, the inner geek in me is fascinated by this result, because if the truth be told I was expecting them both to have at least one antibody. They all have the same parents, Olivia tested positive, Samuel has type 1, as does his dad. So the negative result surprised me. Don't get me wrong I am pleased with the result, but once again this has proved how complex the human body is, especially where genetics is concerned. Nothing has changed for me in the way I treat the girls, like I have said before, what will be will be, I will always be on the look out for it negative antibodies or not.

The reality of the first day back at school.

The children went back to school today, and they were ready. Actually they have probably been ready for about a week. For those of you that follow my blog you will have seen my post last night about getting everything ready.
Well this morning I have to say I was feeling prety smug, we were all up, had breakfast, teeth brushed, lunches made well within my 8:20 am deadline. Samuels blood glucose (bg) level was 6.6 all was good in the Warrington household. So, yes I was very pleased with myself as with four children mornings can be crazy. The only thing that dampened my mood was the fact that it was teaming down with rain!!The school run went smoothly, and I was soon back at home and catching up on Facebook. I was reading some of the threads in the type 1 groups that I am part of and people had been posting their children's morning numbers. Many of them were high, the parents concerned, so i was thankful for our level.
12 o clock arrives and my phone rings, I can see it is school, so I know there is a problem. 3.6!! As we have had almost 7 weeks off they were querying what to do. He had his lunch, we had a slight misunderstanding over juice, they didn't realise that juice in his lunchbox was sugar free. So at 12:30 he was still 3.6 so the phone rang again. We sorted it out and he was fine, and I am sure the only thing that would have worried Samuel was the fact that he couldn't go out straight away and play football.
Obviously we had a rebound level before dinner (15) but we had a rather lovely 8 before bed, back in range.
What today has showed is that diabetes is completely unpredictable, you can start the day with beautiful numbers but that doesn't mean it is going to stay that way. Maybe I won't be so smug tomorrow.

Back to school.

I am sitting at home, all four children are bathed and in bed (they have been since 7....result!!), on the evening before they go back to school after the summer holidays. The usual things are going through my mind, have I got all e uniform? Are the pe kits ready? Have I remembered everything? I know that every parent up and down the country is thinking the same thing.
Then there isthe group of parents whose numbers are unfortunately increasing who have an additional set of things to worry about. Is the care plan complete? Have I packed enough test strips, glucogel, needles, insulin, juice, biscuits and orange juice? Have the bg machines been calibrated? Are the batteries working? Has everyone at school who needs to be trained been trained. Have I forgotten anything? Probably!
Now, I thought that I had been fairly organised. I took Samuels hypo box for his classroom, and his machine and insulin for lunchtime into school this morning. Oh yes! A day early! Check me out! Mrs organised 2011!I was there for a breakfast to celebrate that the school now has academy status. Anyway, whilst I was there I spoke to Samuels teacher and the teaching assistant who is going to be in his class. All is good. I left school and went to the supermarket to get supplies for lunch, and a thought pooped into my head. Does Samuel get a morning snack now he is in year 2? Or do I have to supply one? Will he still go to lunch at 12? Now, knowing what my memory is like...(rubbish) I thought it best to go back to school to ask my questions, the answers were... Yes he will, no I won't, and yes he will.
So, my point......everyone has lots to remember for the first day back at school after the holidays, but spare a thought for us parents with diabetic children, because what we have to remember can have serious complications if forgotten.

Rainbows....

If you were to log onto Facebook and look at my friends what you would see as profile pictures is a flood of rainbows. It is a lovely sight, much nicer than that of the blue candles which so often haunt us. However, as lovely as they look the reason behind them is not so lovely.
When you have a child diagnosed with type 1 diabetes you join the most supportive family of all. You join the CWD (children with diabetes) family. It doesn't matter what time of day it is, if you have a question, someone will be able to help. This support has never been so apparent as over the last few days. On Friday, one of the families announced that their 2 year old daughter Georgia had been diagnosed with leukaemia, devastating news for any family, but this is on top of the fact that their 4 year old son has type 1 diabetes.
The members of CWD started to rally round and posted messages of support on Facebook. They sent love, prayers and thoughts. On Sunday this changed, a group was set up called CWD rainbow fund for Georgia. The aim of this group was to raise money, to help with financial strain that illness can bring. The group had been going for a couple of hours and raised £240. By midnight on Monday over £1100 had been raised, and the profile pictures had been changed to rainbows to show support. It's a huge amount of money to be raised in 24 hours.

It amazes me that a group of people, some who have never met, that have one thing in common, pull together in times of crisis. I am proud to be part of such a caring family. I hope I never need them to do so, but I feel positive they would fight my corner if I needed them to.

This is for Georgia.

https://apps.facebook.com/fundrazr/activity/5be63da770f14666b3d1df2685bfe59b

http://www.youtube.com/watch?v=D-0UyeNY8bI

End of my rope....

As a rule I try and make my blog entries positive and upbeat, much of what I write has sad and serious undertones, but generally I am a positive and just go with the flow. I can't change the fact that diabetes took up residence and inflicts itself on not one, but two of my family members, it is what it is.
However, I find myself in a dark place, and quite frankly am not happy. I have alot going on in my head at the moment and it's not a good place to be but unfortunately you can't ever escape from your thoughts, especially when it's the middle of the night and there is nothing else to focus on.
Samuels levels are out of control in my eyes. He is constantly running high these past few weeks and I can't seem to get them down. I am a control freak and can't bare not being able to control it. It doesn't help that it is the school holidays and the normal routine is out of the window and in it's place is lay ins and laziness. If he could he would play on the playstation all day! This is a constant worry for me as we all know that it's the constant highs that cause the long term damage.
I am tired of it all, and I sit and write this in the half hour I have spare at work I feel sick and could cry. For probably the first time since his diagnosis I find myself asking why? Why did it have to be him? Why is our live now ruled by numbers? High levels, low levels, carb values, insulin doses it is endless. I don't want to keep saying no, and I want him to be care free like his sisters. I want him to run around like a loon and it not make him feel poorly because his levels have dropped. I want him to be able to have a bag of crisps just because he wants them and not to have to look at the clock to see what the time is or what his level is. I miss the days when him and Olivia would get up before us and raid the biscuit tin!! Or, if we decide to go to the park we just go, we don't have to plan for hypos, and don't get me started on birthday parties!!
I realise that this all sounds silly but sometimes it's the simplest things that get you down. Over the last couple of days since I started to write this blog, things have happened to people I know that are truely tragic,a nd it makes me realise that things are not so bad.
So... Onwards and upwards and as Franklin D Roosevelt said "When you get to the end of your rope, tie a knot and hang on."

My panic at work...

For those of you that don't know I do actually have a job. I work at UCLH in pharmacy. Much of my time is spent in the cleanroom which is a controlled area. We make aseptic products such as chemotherapy, IV antibiotics and TPN. Whilst I am working in these areas obviously I don't have access to my phone. For most people this would simply be a mild annoyance, but as a mother of a diabetic child it causes me a huge amount of panic. I like to be near my phone just incase there is a problem at school, especially around lunchtime. I do tend to keep my phone in my pocket, so that although I can't always get to it straight away, at least I know that it has rung, if that makes sense. However, the fact that it has rung and I have missed it also panics me.
Take Wednesday last week for example. I am working in the chemotherapy cleanroom and my phone begins to vibrate in my pocket. I glance at the clock and it is 11:30. My immediate thought is that there is a problem with Samuel. It is almost lunchtime and I know that they were going to test early because they were going to another school for the afternoon. Is his bg level too high? Have I forgotten to sign the dose book? Have I forgotten to even write the dose in? For the record I have actually forgotten .....TWICE!!!!!
A couple of minutes pass and I am starting to panic. I have to find out who called, I can't ignore the fact that it rang, I have to get out of the cleanroom!! What you now have to realise is that I have three layers of clothes between me and my phone. I have my normal clothes on, then I have the firstblayer of sterile clothes. This consists of trousers and a top which actually resembles a pair of pjs. On top of that I have a rather fetching blue all in one suit, boots, a hood, a mask and a pair of gloves. I am sure you have a rather fantastic mental image of me right now!! Anyway, if that wasn't enough I have three lots of interlocking doors to get through. Finally I reach my destination, the changing room, and I look at my phone. It's NOT the school, but it is a local number. In my mind though it could still be school, they have several numbers and not all of them are in my phone memory. I try and call them back I have no credit! I text my husband to ask him to phone me, which he does and I explain what has happened, so, he called the school to see if was them who had called. Thankfully, this time it wasn't the school, so I got myself a new suit and went back into the cleanroom to finish the session.

When Samuel was diagnosed back in March 2009 I was on maternity leave. I struggled to get myself back to work. My Gp signed me off for four months with anxiety and depression, I truly felt that I could not leave him. In September it will be two years since I returned to work, and it is no easier now, than it was back then. I work in London and live in Essex, it task me over 1 1/2 hours to get home from work. So, three days a week I get on the train and I go to work, and I try to push diabetes to the back of my mind, if only for the six hours I am there. However, the anxiety is there waiting in the background and every once in a while it raises it's head and comes crashing in, in the form of a phone call!!

School trips...The 'red' box..

The school trip is something that the children look forward to. The chance to get out of the classroom for the day. The chance to go on an adventure! That's true for Samuel, as long as you take the 'red' box. What's in the 'red' box? I hear you cry, tell me more!
The 'red' box holds all of Samuel's supplies, things that we need to take with us wherever he goes.
It contains:

• Blood testing machine.
• Spare box of testing strips.
• 2-3 cartons of fresh orange juice.
• Packet of biscuits.
• Hypo gel.
• Glucagon.
• Insulin pens.
• Spare needles.

Obviously, depending on where we are going I take a variation of the box. I wouldn't take all of that if we were popping to the shops, I would probably only take his machine. Although, being the forgetful type that I am I often forget to even take that!!

I have been on two school trips this week. The first was with Samuel, the rest of year 1 and reception. We went to the beach, and the trip involved lots of walking. Now apart from the worry that we might misplace a child, as they do like to wander off, the worry was that all the walking would initiate a hypo. It was ok though because I was armed with the 'red' box, just in case. Thankfully nothing was required from the box all day, well apart from his injection at lunchtime, oh, and a couple of biscuits for me, as in the excitement I hadn't made myself any lunch and I was starving!!! Samuels levels actually were on the high side, probably due to the excitement of going on a double decker bus and a train! Oh to be 6 years old!
The following day I went on a school trip to the zoo with Olivia and fellow years 4 and 5s, and minus the 'red' box. This was a much less stressful trip food wise. Although spending the whole day at the zoo with eleven 9 and 10 year olds, with too much attitude for my liking brings a whole different level of worries and stress.

On reflection, if the truth be told I enjoyed both trips, even if I did look like a pack horse with everything I was carrying on Samuels. All the children on both trips enjoyed themselves.
School trips are an important part of learning, and the children gain so much from them. Having type 1 diabetes obviously complicates things slightly, but its not impossible. All it needs is a little more planning, and me, armed with the trusty 'red' box!

All in the name of research (D-GAP)

Monday 11th July I took my two youngest daughters, Victoria 4, and Elizabeth 2 to have their blood taken for the D-GAP trial. I have mentioned this trial before in a previous post, but if you haven't read it, which in itself is quite frankly shameful! Where have you been?! I will explain it again.
D-GAP stands for Diabetes - Genes, Autoimmunity and Prevention. It's looking at the genes and the immune system of siblings of diabetic children who were diagnosed under the age of 16 years. The trial involves taking two samples, a saliva sample which gets sent to Cambridge where it will be used for the study of genes relating to diabetes and it's complications, and a blood sample which will be sent to either Cambridge, London or Bristol. Here the white cells in the blood which determine immune responses and chemicals such as auto antibodies which could relate to diabetes risk will be studied. So, that's e science bit taken care of.
Olivia took part in this trial last year and her results show that she has two or more of the four antibodies. This means that she has a 1 in 5 (20%) chance of developing type 1 diabetes in the next five years. Now being the 'geek' that I can sometimes be I was very excited to hear that D-GAP had arrived at my local hospital, I was even more excited to discover that they had dropped the age from 5 years to 18 months!!! This meant that both my girls could take part, I would get results and be able to compare my three girls!! I was beside myself!!!
So, I made the appointment with the trials nurse, Kelly and off we set. I had tried to explain to the two girls that they were going to have their blood taken, and that they were doing it for Samuel, thankfully they were both happy with that.
We arrived at the hospital with some time to spare, which is most unlike me as I am usually late! My mum had come with me so that she could entertain one as the other one was being tested. We were met by two lovely nurses Kelly and Vicky. The all important 'magic' cream was applied to both girls and they waited with colouring books in hand whilst their medical history was taken and I signed the consent forms. This did take slightly longer to complete than it should have as anyone who knows me well, knows I like to chat!!
The time finally arrived for the blood to be taken, Victoria was up first. Now, we had decided that we would play rock, paper, scissors to distract her whilst the blood sample was being taken. Vicky was armed with bubbles.....what could possibly go wrong? Well, actually quite a lot. Victorias viens were not playing ball at all!!! The blood point blank refused to flow. Kelly was trying her best to get the sample without hurting Victoria, who was bored of playing rock, paper, scissors by now. I was sitting there thinking that it wasn't going to happen. We were not going to get the sample, she wouldn't be able to take part, and I wouldn't be able to compare my girls!!! Bugger!!!!
However, that was not the case and with careful manipulation of the needle the blood began to flow....success!!! Victoria, by this point was looking very sorry for herself, but two plasters, two stickers, a packet of iced gems, juice and some bubbles soon fixed that.
One down, one to go. It was Elizabeths turn. As she was that much smaller than Victoria I sat her on my lap. My first thought was that this was going to be stressful, and Elizabeth was not going to allow it to be done, but she surprised me. She sat on my lap and didn't make a fuss. Thankfully her veins were much more cooperative and the sample was taken with far more ease. Elizabeth also came away with a Dora plaster, a sticker, some chocolate and the all important bubbles.
Kelly gave me the bottles for the saliva samples so I could do it at home as the blood tests had taken so long, and we went on our way. Getting that sample was a whole lot harder than collecting their blood. Trying to get both girls to dribble, so that I could collect it with a swab was NOT easy. Anyway, I managed it, the samples have been posted and now we wait.
The results should be back in about three months, and I for one am very excited to see what they are.

Without trials like this how are we ever going to find out the reason why so many children are being diagnosed with type 1 diabetes. I am very proud of my girls for taking part, and we all hope that one day we may find that all important cure.

Losing perspective...

Before I embark on telling this story I want to make something very clear right from the start. This event happened in the October following Samuels diagnosis in March 2009. It involves 'dead in bed syndrome' which obviously is extremely serious, and every parents worst fear. I am NOT making light of the subject at all, and as time goes on and I hear that another young life has been lost my heart breaks, each and every time. The point that I am trying to make by telling this tale is that when dealing with a diabetic child there are times that you lose all perspective of what is going on around you and logic goes completely out of the window, and you think the worst in even the most simple conditions. I really hope that I don't upset or offend anyone that reads this.

Like I said earlier it happened in October 2009 and I took the four children to Great Yarmouth for a couple of days. My friend (Karen) was already there, she goes every year and she was the with her two children, plus another three children, and she thought that it would be fun if we joined her. Now, I know that you are doing the maths. That's right two adults and nine children, in one caravan for two nights!! I don't know about fun......it's completely mental!!!
Anyway, we arrived, threw our things in the van and went out.
Fast forward to the evening. A couple of drinks had been consumed, and we were talking, as you do. Now I don't know how the conversation lead to 'dead in bed syndrome'. It's not your usual light hearted discussion that you would have at the end of a lovely day, however, this is where we found ourselves.
Now, you have to remember that Samuel was fairly newly diagnosed, and although I had lived with my husband having type 1 for 13 years I had never heard of 'dead in bed syndrome', nor had I heard of anyone who had lost anyone to it. For me it was a statistic in a book, and a fairly low one at that, so in all honesty I hadn't given it any thought.
The night progressed and I tested Samuels blood before I went to bed, his level was low so needed treating. I was trying to wake him, and he was having none of it. He did not want to wake up! Anyway, we managed to wake him, treat the hypo and eventually turned in for the night.
What you need to understand now is the sleeping arrangements. I was in a room wi a couple of the children and Karen was in the lounge area on an inflatable bed, next to Samuel and a few other children. The morning came and we were having a chat over a cup of coffee. Karen was explaining that she had had a terrible night, and hadn't slept very well, and here's the reason why....
Karen had woke in the middle of the night and Samuel was cold, instead of thinking the obvious, that being he had kicked the covers off and we were in a caravan in the middle of October so he would be cold, her first thought was that he had died! Her second thought was not how I would react, but how she was going to explain that there were 11 people in the caravan!!! Obviously she checked that Samuel was breathing whilst trying not to wake him.
As, thankfully everything was ok we laughed about it, but I think it shows that when you live with a diabetic child, sometimes you lose perspective, and have the most irrational thoughts and can't see the obvious.
That said, what I learnt on my return home, was that shortly before my arrival at the caravan Karen had had a phone call from a friend to say that the teenage daughter of a mutual friend of theirs had sadly passed away due to 'dead in bed syndrome' and she hadn't told me as she didn't want to upset or scare me. So maybe her thoughts in the middle of the night weren't so irrational after all.

Diabetes awareness week: The final day

So diabetes awareness week 2011 has come to an end, and what a week it has been. On Mondays the parents of children with type 1 diabetes came together and managed to make a large pharmaceutical company (Lloyds) take responsibly for a misleading advert that they aired on Sunday night to start diabetes awareness week. We got them to take it off the air, rework it, and apologise for the error that they made. Don't mess with the type 1 parents!! I have done my bit, I hope, by adding a blog each day and linking it to my Facebook account so I can reach a wider audience. Education is the key, because until a cure is found we need to do all we can to try and prevent children being mis diagnosed,ending up in DKA, or losing their lives altogether.

As a parent of a child with type 1 diabetes, I have made many on line friends within the diabetic community. We are committed to find a cure for our children, and at the moment all we can do is HOPE that it comes sooner rather than latter.

http://www.youtube.com/watch?v=Z2uE0TlBZGc

Diabetes awareness week: Diabetes ketoacidosis (DKA)

DKA is a genuinely serious medical emergency. Without urgent treatment, this diabetes complication can lead to death. With adequate and rapid intervention and treatment, mortality rates are lowered to around 5%.
it occurs when the body has no insulin to use, and instead switches to burning fatty acids and producing acidic ketone bodies.

DKA may itself be the symptom of undiagnosed diabetes. It is thought that there are around a million undiagnosed diabetics in the UK alone. A high percentage of children are in DKA at diagnosis.
Typical symptoms include:
Vomiting,
Dehydration,
Deep breathing,
Confusion and sometimes even coma.

The symptoms usually evolve over a 24 hour period, with the first sign often being hyperglycaemia.

Treatment of DKA involves administering IV fluids to correct dehydration. Insulin is also required to instantly suppress the ketone bodies that the body manufactures. Treatment of other underlying causes of DKA must also be addressed, including infections.
Close observation of the patient to quickly identify and prevent complications is essential.

If you detect ketones and your blood sugar levels are also high, contact your dr or emergency services at once. It really is that serious.

Diabetes awareness week: Understanding hyperglycaemia

Hyperglycaemia develops when there is too much sugar in the blood. Hyperglycaemia occurs in diabetes may be caused by:
Skipping or forgetting to take insulin
Eating too many grams of carbohydrate for the amount of insulin administered
Infection
Illness
Increased stress
Decreased activity or exercising less than usual.

It is important to know the early signs of hyperglycaemia, if it is left untreated it may develop into diabetic ketoacidosis (DKA).

Early signs of hyperglycaemia include:
increased thirst
Headaches
Difficulty concentrating
Blurred vision
Frequent urination
Fatigue
Blood glucose level of more than 10 mmol/l

There are things that can be done to bring the blood glucose levels down. These are:
Drink more water: Water helps remove the excess glucose from the urine and helps avoid dehydration.
Exercise more: this will help lower the levels, although if the glucose level is over 15mmol/l you MUST check the urine for ketones. When you have ketones you MUST NOT exercise.

Hyperglycaemia can be prevented by being aware of your diet, count the carbohydrates that you are eating. Test your blood glucose levels regularly. If high levels persist contact your medical team.

Diabetes awareness week: Understanding Hypoglycaemia...

Hypoglycaemia (hypo) is defined as a blood glucose level of less than 4.0 mmol/l. Symptoms of this include:
Nervousness,
Sweating,
Intense hunger,
Trembling,
Weakness,
Palpitations, and
Sometimes trouble speaking.

In most people these symptoms are easily recognisable, and so the person eats to resolve the symptoms. These symptoms act as warning signs. The brain can still access circulating blood glucose for fuel.
If they do not or cannot eat then the blood glucose levels continue to drop, at this point the symptoms progress to confusion, drowsiness, changes in behaviour, coma and seizure.

Mild to moderate hypos can be treated by giving a fast acting glucose, for example fresh orange/apple juice, a can of coke ( non diet ), four dextrose tablets.
An improvement should be seen within 10 minutes, if the levels after 10 minutes are still below 4.0, then the treatment can be repeated. Once the level has risen above 4.0 a long acting carbohydrate should be given. This can be a couple of biscuits or half a sandwich.

If the hypo has progressed to the point where they cannot or will not eat anything then more drastic action needs to be taken. Glucagon can be given intramuscularly. Glucagon causes a rapid release of glucose stores from the liver. A response is usually seen within minutes and lasts for about 90 minutes. Again, a long acting carbohydrate should be given to maintain the blood sugar levels in a safe range.

If glucagon is not available then an ambulance must be called immediately so that an intravenous route of glucose can be administered as soon as possible.

Diabetes awareness week: Type 2 explained....

Type 2 diabetes is more common than type 1, 90% of people living with diabetes have type 2.
Unlike type 1 there are lifestyle factors and genetic factors that increase the chances of developing type 2.
If family members members have type 2 diabetes then you are at an increased risk.
If you are overweight then you will significantly increase your risk.
If you have high blood pressure or high amounts of lipid in your blood then the risk is increased.
The symptoms of type 2 diabetes are similar to type 1, but because in the early stages they are so mild that they generally go unnoticed. Because of this many that are diagnosed would have had the condition for months, maybe even years before they know it. It also means than a high proportion of people with type 2 already show signs of eye damage and hardening of the arteries at the point of diagnosis.
Type 2 diabetes is usually controlled by diet alone, or the combination of diet and tablets.

Diabetes awareness week: Type 1 explained..

Due to inaccurate advertising from Llyods pharmacy I feel that it is very important to understand the different types of diabetes.
The information is taken from a JDRF publication.

Type 1 diabetes is a chronic, life threatening, and lifelong condition. It is caused by a defect in the immune system, it is not caused by lifestyle and cannot currently be prevented.
In people with type 1 diabetes, the body mistakenly attacks the insulin producing cells in the pancreas. This means that little or no insulin is produced. As a result, the body cannot convert glucose from the food into the energy the body needs to survive.
Just to stay alive, people with type 1 diabetes rely on multiple daily insulin injections (or pump infusions) and finger prick blood tests. Insulin however is NOT a cure, it is life support, without it they will die, and people with the condition still face future complications.

Diabetes awareness week: Do you know the signs?

Today, 12th June is the start of Diabetes Awareness Week. So, I thought that I would write a blog each daybthis week to do my bit for raising awareness.
To kick it all off I have decided to start with the obvious..... The signs/symptoms of type 1 diabetes. If we can get the message to enough people, then lives WILL be saved. Children will stop dying due to mis-diagnosis. It really is that important.
So.......here goes:

1) Extreme thirst
2) Tiredness, no energy
3) Weight loss
4) Frequent urination
5) Blurred vision
6) Thrush

If you, your child, or anyone you know has one or more of these symptoms then talk to your doctor.
Type 1 diabetes can affect anyone at any age. My husband was 25 years old at diagnosis, my son was 4. Early diagnosis is very important so please if you have any concerns talk to your doctor as soon as possible. You may well save a life.

The Summer Term 2011

The final half term of the school year is upon us. Six more weeks at school and the summer holidays will be here. Up and down the country children are counting down the days until 'no more school', and up and down the country parents are counting down the days for a completely different reason 'how am I going to entertain these children!'
However, as everyone is relaxing spare a thought for us 'D' parents, because in our world there'd is no relaxing and this part of the school year is very busy and very stressful.
The first thing to worry about is who the next teacher is going to be. Are they going to be understanding and realise how serious type 1 diabetes is. Now as I have said in previous posts I have no problems at all with Westwood. I know all of the teachers and whoever Samuel gets I am confident that there will be no problems, but there are still things that need sorting out. This brings me on to the second thing to worry about, the dreaded 'care plan.' This needs to be reviewed every year. Luckly for me nothing has changed since I wrote it this time last year, although I do need to have a look just to make sure.
The third thing is of course the meeting with the teacher to go over the care plan, which reminds me...... I must make sure I inform the teacher that Samuel has been known to play tricks with his machine and scroll back his numbers.
Finally there is the move from primary to secondary school. Thankfully Samuel is only in year 1 so I have a good few years before I have to worry about that. Although just thinking about it feels me with dread, because more of the control is handed over to the child.
So as school is winding down for the summer remember us, and the fact that even the most simple of events is made so much harder once diabetes is added to the mix.

It's complicated.......

Diabetes by nature is a complicated condition, you get to realise that very quickly. You can be plodding along, everything within range, and then CRASH....a growth spurt, BANG.....a cold, WALLOP....a hot day, and the levels are all over the place. Actually the doesn't even need to be a reason for it all to go wrong, sometimes it just happens because unfortunately that's just how diabetes works. We are told very early on to try our best to keep levels within range because the longer we have 'good' control the chances of complications occurring are reduced.
Complications....there's a word....there's lots of them. You have the short term ones, the most common hypoglycaemia, this is blood glucose levels of below 4.0, this level is too low to provide enough energy for the body to work. DKA...diabetic ketoacidosis this occurs due to constant high levels. If that wasn't bad enough in comes the scary long term complications. Diabetics have an up to fivefold increased risk of developing CVD (cardio vascular disease) this includes heart disease, stroke and all other diseases of the heart and circulation. Diabetic retinopathy...damage to the 'seeing' part of the back of the eye. This is the most common cause of blindness among working age people in the UK. Kidney disease is very common in people who have had diabetes for over 20 years.
Then comes neuropathy....nerve damage. This can be split into three separate types:
SENSORY these are the nerves that carry messages from the skin, bones and muscles to the brain.
AUTONOMIC these are the nerves that control involuntary activities of the body, the stomach, intestine, bladder etc.
MOTOR these are the nerves that transmit signals to the muscles enabling them to carry out movements like walking and moving the hands.
Lastly there is the thought that diabetes reduces life expectancy by 15 years, and every parents worst nightmare...dead in bed syndrome...and yes it is exactly what it says, they go to bed and don't wake up.

As a parent it is my job to worry about all of the above, but our children need to be aware of the complications, and realise how important it is to try and control levels, but when is the right time to make Samuel aware. He is 6, he doesn't need to know at the moment, but he will. The question is when do I tell him, and how much do I tell him?
I don't know the answer to that now, but I am sure when the time comes I will.

A mothers paranoia

I have been giving this some thought and I truly believe that with diabetes comes paranoia, they are best of friends. I have always considered myself fairly laid back with regard to Samuels diabetes. I have always thought that there is no point stressing and worrying about things that you can't control or change. Granted, I have times when I don't listen to myself, but hey I am only human.
When our first child was born we always had the underlying worry that she would develop diabetes. My husband has type 1, and it was, and still is a constant worry that he will 'give it' to the children. This worry eased and we went on to have three more children.
However, when Samuel was diagnosed the guilt returned ten fold, more so for my husband. I remember thinking that if any of the children were going to develop it it would have been my first. I had bottle fed her, and breast fed all the others, and breast feeding reduces the changes of developing diabetes......... right?
Anyhow, Samuel has now been diabetic for two years and I find myself watching the girls more closely. Looking for any sign, any hint that diabetes is going to force itself on another of my children. My oldest has taken part in the D-GAP study, this looks at four antibodies of 'unaffected siblings of a diabetic child diagnosed under the age of 16.' We know that she has 2 or more of the 4 antibodies, this means that she has a 1 in 5 (20%) chance of developing type 1 within the next 5 years. My youngest has recently had chicken pox. Evidence has shown that viruses, in some people, can cause the pancreas to shut down and they develop type 1 diabetes. Chicken pox is viral and Samuel had had bad case of flu three months before he was diagnosed.
Every time one of the girls goes to the toilet more times than they did the day before, or has had more to drink, or looks tired the first thing that springs to mind is.... is it a sign? Should I be worried?
I KNOW that the likelihood of the girls developing type 1 is slightly higher as they have a parent and a sibling affected, but it is not that high.
I KNOW that there is actually nothingbi can do to prevent them from developing it.
I KNOW that I can't spend the rest of my life watching and symptom spotting.

I don't want to turn into a paranoid mother reading too much into everything that they do. The chances are that they are drinking more because it is a hot day and they are thirsty. Although it surely can't hurt to do random testing........say, once a month..... can it?

Welcome to hypo city........

There is no doubt about it, this April has been fantastic weather wise. The sun has been shining for the whole school holidays, (well here in Essex it has) and this Easter weekend is set to be one of the hottest, if not the hottest on record. But what this glorious weather brings with it is nightmare blood glucose levels. Welcome to hypo city !!!!
Hypo city is where Samuel is currently residing and by looking at the comments from the online diabetic community I know that he is not alone. Its a place that is full of plummeting sugar levels, hypo gels, reducing ratios and families struggling to regain at the very least a little bit of control over the dreaded diabetes.
This is what has happened to Samuel today. He woke on a 6.8, now as numbers go, this was a good starting block for the day. However, it wasn't going to stay this way for long. We didn't quite make it to lunch time. Granted it was close, it was only half an hour away, I don't know why he came to test, because he said he was feeling ok. That's the thing with Samuel at the moment, he wants to test ALL the time. I think he wills it to be low, that way he 'can have something', those are his exact words. Anyway, he came in from the garden to test and it was 2.2!!!!! He had signs, he said that he was feeling ok, and if he had had his way he would have been in the garden still running around. So we treated with his orange juice, like we always do and because it was close to lunch time I made all of the children their lunch. I waited until about half an hour after he had eaten before I gave him his injection as he was still charging around the garden like a loon.
Half past three saw Samuel come in from the garden saying that he didn't feel very well. So we tested.....3.4, once again we reached for the orange juice. Hopefully we will make it through the night with decent levels, but like always, with diabetes, you can never be too sure.
Today's levels are not uncommon and whilst the weather remains warm they will continue. We all love the sunshine, and enjoy the warm days, but whilst you are sitting in the garden watching your children run around without a care in the world, think of those families stuck in hypo city. Those families struggling to keep those levels above 4, wishing, not for the first time that OUR children could play, could run around without feeling rubbish because their levels have crashed, having to come in, stop what they were doing, and having to wait for the levels to rise. Wishing that they could play without a care in the world, like ALL children deserve.

All carbs are NOT created equal!!!

This statement reminds me of the George Orwell book, 'Animal Farm', when the animals are making their rules....'All animals are equal' but by the end of the book the statement has changed to 'All animals are equal, but some animals are more equal than others'.
Carbohydrates, carbs, complex carbs, simple carbs, whatever term you use to describe them are basically the ideal source of energy for the body. This is because they can be converted more easily into glucose, the form of sugar thats transported and used by the body, than proteins or fats can.
We have been counting carbohydrates for about a year now , and the concept is straight forward. For every 10g of CHO (carbohydrate) that Samuel eats he requires 1 unit of insulin for breakfast, and 0.5 units for lunch and dinner. Simple, most foods have the nutritional information on the labels, or if not the information can be found in my carbs & cals book, or I can check online. Its just a matter of weighing out Samuels food, calculating the amount of carbohydrates in the meal and working out how many units of insulin he needs. He will then have perfect blood glucose levels 24 hours a day, 7 days a week! In theory it sounds perfect, and simple, and the answer to our prayers.
However, back in the real world and for those of us who live alongside diabetes know that it is not that simple. It SHOULD be simple though, but as the title says 'all carbs are NOT created equal'.
For example, breakfast..... a bowl of rice krispies (45 g), or two weetabix. Both have a total carb value of 30. So for Samuel 30g CHO requires 3 units of novo rapid insulin, asy. But, what we also have to take into consideration is the GI (glycaemic index) value. The GI is a measure of the effects of the carbohydrate on the blood suger levels. Carbohydrates that break down and realise glucose into the bloodsream quickly have a HIGH GI, thand those that breakdown slowly have a LOW GI.
Rice krispies have a high GI value, so the glucose is realeased quickly, this can result in a rapid spike in blood glucose level, and an equally as rapid drop, so hypos can occur mid morning. Weetabix on the other hand has a low GI so the process is much slower, and the rapid spikes don't occur.
So know we understand the effect of the GI value we have it sussed, but no, what about the effect of the fat content of the food. White bread, and a jacket potato both have a high GI value, however put butter, or sunflower spread etc on them, and the release of glucose is slowed down, as the body works on digesting the fat first.
In all honesty I have to say, that a year ago, before we started I thought that carb counting would be easy, it's just maths, and I am quite good at maths. It's just a numbers game, and let's face it everything to do with diabetes is numbers. What quickly becomes apparent though is that the body is an amazing machine, especially when it is working correctly. We can eat what we like, it's digested, and the blood glucose levels remain level as the pancreas steps in and releases that all important hormone insulin. Maintaining that balance artificially is hard! It's complicated, and the most important thing I have realised is that diabetes plays by, and changes it's own set of rules.
It would be so much easier if 'all carbs were created equal' but it's just not meant to be. So we plod along, doing our maths, doing the best we can, hoping that it is good enough.

Samuels second anniversary

Otherwise known as Samuels diabetic birthday. Samuel is like the queen, he has two birthdays. One is in October, which celebrates e day of his birth, and the other, the one you could live without is 15th March. This is the day, two years ago that diabetes decided to knock on our door, and enter our lives, the most unwelcome houseguest to ever arrive. For once diabetes has come through the door, it lays down it's roots and never leaves.
I remember the day he was diagnosed as if it were yesterday. It was a Sunday, and in the afternoon Samuel had been hounding me for a drink. This was more apparent after we had had our Sunday roast, he hadn't even finished his drink and he was asking for another one. As my husband (Scott) has type 1 diabetes I knew that excessive thirst was a symptom, so I mentioned it to Scott and he said that he hadn't really noticed.
As the evening went on I became more bothered by it so Scott said to check, we had the urine sticks and it would put my mind at rest. So the next time Samuel went to the toilet I got him to wee on a stick. The result was instant, and I knew straight away. I showed it to Scott, the reading was in the 20s. We then got out the blood glucose monitor and tested Samuels blood, the machine was flashing HI, this meant that it was in the 30s and was too high for the machine to read. We both knew what this meant, our four year old son was diabetic.
As we have three other children and at this time the youngest was only seven months old, we needed to find a babysitter whilst we took Samuel to the hospital. That was a mission in itself. We had no house phone so had to use our mobiles but the orange network was down. So I was running round the neighbours to try and find someone who was in, with a phone that I could borrow.
I called my dad, and he came over and took charge. Scott and I were initially going to drive Samuel to the hospital ourselves, but my dad called an ambulance. The first response car came out, and once again tested Samuels blood, by this time though, Samuel was having none of it!! He was screaming and crying, it was heartbreaking. Again, the machine was reading HI so an ambulance was called.
Scott went with Samuel whilst I followed in the car with the baby. Throughout the drive all I could think of was my poor boy, I felt physically sick and thought why did my boy have to get it. Anyway, we arrived, and the time we were there (6 hours) went SLOWLY. We went up to a ward, and they ran some blood tests. We were eventually told to go home, and return at 8:00 am so that they could see what his levels were on waking, before eating breakfast.
On the Monday morning that's what we did. I arranged for my friend to take the children to school, and my mum was going to collect them. We spent another 4 hours at the hospital, and after we were again sent home. This time we were given a monitor and told to test before each meal, two hours after each meal and before bed. We were told to return on Wednesday. I remember feeling quite upset at the hospital, as once they knew that Scott was diabetic they ignored me and only talked to him. One nurse said to me that it must be reassuring to already have a diabetic in the house. I remember looking at her straight in the eyes and informing her that Scott was the worst diabetic you would ever meet, as he doesn't look after himself at all!!
Wednesday arrived and we were back at the hospital and we finally found out what insulin samuel was going to be on.
We went back on the Thursday for our training, and the diabetic nurse came out to the house on the Friday. By the end of the day my head was spinning with all the information, and I already had an understanding of the condition.

In the early days it was all to easy to feel sad and upset. Scott, I know blames himself for Samuels diabetes, that it is his fault, that he somehow gave it to him.
However, we celebrate Samuels diabetic birthday. This year Samuel told his teacher, the dinner ladies, actually anyone that would listen. He wanted to take sweets in for his class, so he did. Well it was his birthday!!! We went to McDonalds for tea, Samuels choice, and the children had ice cream with chocolate I. It!

The way I see it, and I know that not everyone thinks like me, I won't allow diabetes to beat us, or to bring us down. I won't let it consume my every waking hour, for one I have three other children to look after, and two, it takes up too much energy and negative emotion to dwell on it.
Obviously I have bad days, and so does Samuel. There are days when he asks why he has to be diabetic, and if I could take it away from him, I would, I would do it in a heartbeat. But I can't, and so embrace diabetes and all that it brings, and we accept that this is what our life is now. However, along with the acceptance there is a warning.......
Diabetes..... You will NEVER win, you are NOT a welcome visitor, which actually is the wrong word, visitors leave! We WILL tolerate you, and we CAN live side by side. You will NOT take him from me. All I ask is that you please play nice, and play by the rules, at least MOST of the time, as I know it will never play nice ALL of the time.

So lovely....

HOW GOD SELECTED THE MOTHER OF A CHILD WITH DIABETES
by Erma Bombeck

He passes a name to an angel and smiles, "Give her a child with diabetes." The angel is curious. "Why this one, God? She's so happy."
"Exactly", smiles God. "Could I give a child with diabetes to a mother who does not know laughter? That would be cruel."
"But has she the patience?" asks the angel.
"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I am going to give her has her own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in You."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps. "Selfishness? Is that a virtue?"
God nods. "If she cannot separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with less than perfect."
"She does not realize it yet, but she is to be envied. I will permit her to see clearly the things I see .... ignorance, cruelty, prejudice ... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side.""And what about her patron saint?" asks the angel,his pen poised in mid air. God smiles. "A mirror will suffice."

This poem is one which is passed around the online diabetic community.

Eating too much popcorn contributes to diabetes.

This was the statement that was broadcast to the nation by channel 4's 'Hestons Mission Impossible' on the 1st March 2011.
Parents of children with type 1 diabetes will have been jumping up and down with rage, shouting at the television, for once again failing to distinguish between the two main types of diabetes. This happens a lot, the recent 'change for life' campaign made the same mistake. It said that adopting a more healthy lifestyle would reduce the likelihood of developing diabetes.
Yes, both of thoses statements are true, about type 2 diabetes. Adopting a healthier lifestyle, eating less fat, less sugar and exercising more, will, reduce the likelihood of developing type 2 diabetes as it is a condition which is mostly environmental.
However, type 1 diabetes is an autoimmune condition, this is where the body turns on itself and attacks it's own cells. In this case it is the islet cells in the pancreas that ar attacked and the pancreas shuts down. It is thought that this is caused by a virus ie flu, chicken pox, normal everyday viruses that in some unfortunate people causes the pancreas to do this. At the moment nothing can be done to prevent this from happening, you could say that we were just unlucky.

Eating too much popcorn did NOT cause my sons diabetes.
Eating too many sweets did NOT cause my sons diabetes.
Drinking fizzy drinks did NOT cause my sons diabetes.

A virus DID cause my sons diabetes.

Children who have type 1 diabetes and their families already have enough to deal with, what they don't need is misinformed people telling them that it is their fault, that they are to blame, that something they did caused their children to get this life taking condition.

So, when you hear diabetes being spoken about please remember that there are at least two different types, which are completely different conditions, because more often than not the distinction won't be made, and up and down the country us parents will once again will be sighing, as our children will have been let down again.

School Responsibility

I am going to start by saying that I realise that I am extremely lucky to have the fantastic support that I have from the head and other members of staff at my childrens primary school. Anything that I have asked them to do regarding Samuels diabetes they have done, no questions asked. For example, when Samuel went onto four injections a day so needed one at lunchtime the head offered to do as did the head mid day assistant. The diabetic nurses went in, along with me and gave them the relevant training. They now have six members of staff trained.

But........ What would I have done if he had said no, or there were no volunteers? What if nobody wanted to take responsibility for checking his blood sugar levels?

Statistics from Diabetes UK show that almost half of parents with diabetic children in primary school have to dramatically reduce their working hours, or quit their jobs altogether to go into school to check levels or to administer insulin because the school won't do it!! I didn't realise that schools could refuse. I took it as given that they would just do it. However, the more I am in contact with other families the more I realise just how lucky we are, because our school is the exception, not the rule.
There are some primary schools which are failing our young children and that is just not acceptable. Our children have a condition, it is not their fault, and as parents we expect our children to be treated the same as their peers whilst within the school environment.
Our diabetic children have the same dreams and aspersions as other children of the same age, and they should be nurtured, no exceptions. They can go on school trips, and yes that does mean the residential ones, it just needs more forward planning. They can do PE, they can charge around the playground.
Children spend a huge amount of time at school and this time should be fun, it should be interesting, and our children should be excited by their learning. Just because they are diabetic they shouldn't be restricted or held back, the schools should have a 'can do' attitude not 'can't do.'

Westwood Primary School have a 'can do' attitude, they go above and beyond what is expected of them, and they have exceeded my expectations. They do this because every child matters, EVERY child.......even those with long term medical conditions.

Diabetes........A blessing or a curse?

Last year when we saw the psychologist she asked me if there were any positives to Samuel being diabetic. The most obvious answer would be no! What could possibly be good about diabetes?
However, I believe that there are positives in every situation. Granted, they may be hard to find, easy to miss, but they are there, you just have to look hard enough. For example, our family as a whole probably has a more healthy diet than most. We don't have many 'bad' things in the house, and the children generally eat only at meal times, so don't 'graze' all day. Samuels health is monitored very closely by the hospital, we go every 2-3 months. His height and weight are monitored every time, and once a year has his blood taken, so if there was a problem it would be picked up sooner rather than later. The fact that we have one diabetic child means that we are on the look out for it in the girls, so, if one of them began to show any signs we could get it checked straight away.
The negatives will always outnumber the positives in my mind, but like I said at the beginning if you just dig deep enough, you will find your blessings.

A sea of blue candles...

Saturday 29th January 2011 was a sad day for the diabetic online community. As I turned on facebook I was met by many status updates saying the same, profile pictures changed to show a sea of blue candles, so I knew what had happened. Diabetes had once again shown its dark side.
Five separate families, united in their grief, each having lost a loved one, lives cut short, all because of diabetes.

• A 24 year old Australian woman had passed away from DKA
• A 27 year old mother of two.
• A 16 year old boy
• A 9 year old, depressed, so took her own life
• A 18 month old who was misdiagnosed.

This is not meant to happen, children are not meant to be misdiagnosed, children are not meant to be taking their own lives, children are not meant to be dying, adults are not meant to be dying. Not now, not in 2011, not with all of the advances in medicine that we have.

The diabetic community light their candles and say a prayer for those that have been lost, but are thankful that it is not them, that they are the lucky ones. Always aware in the back of their minds that next time it could be them. In the early hours of the morning parents will be checking on their children, testing blood sugars and treating if needed.
When these things happen the fear that we try and put to the back of our minds come back to the forefront, and the biggest question we ask is why? Why does this continue to happen? Why do people not know the signs? Why do people still not understand how serious diabetes is? It is a life threatening illness, a life taking illness.
More needs to be done to raise awareness, more research needs to be done. The time has come for a cure to be found.
For those five families it will come too late, but for the rest of us it can't come soon enough.

The Annual Review!!

Samuel had his annual review on 5th January 2011. It would have helped a great deal if in fact I knew this before we went. I thought that it was in March...... oops......, so as I was unaware I wasn't very prepared for how long we were going to be at the appointment.

Ask any parent of a diabetic child about the 3 monthly clinic appointments. They will tell you that we dread them, leading up to it we get the feeling that you used to get if you ever got called in to see the head at school. It's like a test, a test to see how well we have controlled the diabetes. Have we been good enough.......and if not...... why not......what could we have done different? Of course this is not the intention of the visit, it is not to measure our shortcomings and make us feel inferior to the diabetes. This however, is how we all feel.

The annual review is more drawn out than the usual appointment as you have  to see the entire 'team'
It starts with the height and weight, thankfully no drama there. This is carried out at every appointment, although as an extra special treat they measure his blood pressure, which they tell him is testing his muscles.
Then we have the blood test, which I know tests for coeliacs but I don't know what else. Out comes the magic spray, and the blood test is carried out. This time though the veins are not co-operating. The left one went into hiding and refused to realise any blood! So the right one had to be used. Samuel was very good although was starting to get upset, which was  very unlike him. I tested his sugar and it was 3.8! No wonder he was upset. Now, this was a problem, the disorganised person that I am hadn't taken any 'hypo' supplies with us. Bad mummy! Thankfully, as you would expect they had some so it was fine.
Next stop HbA1c test. This is the most feared part. Has it gone up? If it has then you have lost and diabetes has won this time. You sit there feeling sick, waiting for the result, thankfully for us it had gone down from 8.9 to 8.4, phew, we won this time round. Injection sites are checked for lumps and bruising. Unfortunately Samuel takes after me and bruises very easily, so as usual there were some on his arms. Samuel kindly informed the nurse that 'mummy bruises me all the time!!!'
Then it is the turn of  the consultant. He reviews the insulin dosage, looks over the glucose levels and gives his verdict. Once again, for us it was all positive, no changes need to be made, all is good.
It would usually be the turn of the diabetic nurse, however this time she was sitting in with the consultant so it was a 2 for 1 offer.
We were almost there, the dietitian. Now by this point we had been at the hospital for about two hours, and Samuel being a typical six year old boy, was bored and climbing the walls, so didn't what to sit still why I talked. So we made it quick, and I briefly told her what he generally eats. At this point I worry that I am feeding him rubbish.What child doesn't like junk food, granted he doesn't have it all the time, but still the fear is still there.
We are now on the home straight, the final hurdle, the psychologist!
Luckily, this time she didn't really have much to say, only really asking if everything was ok. Which it was, so nothing more was said.

We reached the end, finally. We didn't make it back in time to school for Samuel to have his lunch, so we had a sneaky McDonald's ssshhhh, don't tell anyone. I then delivered him back to school.

So that's it, the annual review, its exhausting! I'm glad it only happens once a year!

It's not fair !!!!!!!!

Now I would bet money on the fact that you think that this statement is about Samuel. It's not fair that Samuel is diabetic, however, that is not the case, and I would be richer :)
I am talking about the 'non-affected' siblings, but this statement would also be wrong. When someone in the family has type 1 diabetes the WHOLE family is affected. So, what I should say is the 'non-diabetic' siblings.
I have three girls as well as Samuel, the girls, so far show no signs of having diabetes. However, I find myself being just as strict with them and their food as I am with Samuel. I don't let them have food as freely as I used to. They can't have crisps or sweets just because they want to. I don't let them because Samuel can't. I won't let them sit and eat crisps and cake in front of him, it's not fair on him. But...... the reverse could be said. Is it fair for the girls to miss out? They don't have diabetes, so why should they follow Samuel's routine.

The way I see it, and I realise that not everyone will agree. The girls are not going to get ill by NOT eating cake, crisps, biscuits and sweets. Samuel could, and I am not willing to take that risk with his health. We live in a time where obesity is a huge problem, people, especially children are eating far too much junk. So, by reducing the amount the children eat can only be a good thing.
The children, all four of them, don't miss out completely. We still have desert, it just tends to be on the weekend, and we make adjustments to the insulin dose to counteract it. He still has crisps, he has them sometimes with his lunch, and he still has treats. He just doesn't have them ALL the time, which surely has to be a good thing.

So, am I wrong in what I do?
Am I being unfair on the girls for not allowing them to eat what they want? If I am, then what should I do? It's not fair on Samuel to sit and watch them have something that he can't.

Diabetes can be cruel!
It's NOT fair! It's NOT fair on anyone!