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.