Tuesday, 28 December 2010

Christmas....... It's meant to be relaxing!!!

When you think of christmas, what springs to mind? The season of good will, spending quality time with the family, over indulging with chocolate and yummy food. Eating big breakfasts, a huge Christmas dinner followed by cheese and crackers, and apparently according to some study it has been shown that we eat on average every 23 minutes over the Christmas period!!! That's a lot of eating!
So, let me stop there, if I am honest I thought that this Christmas would be easier. Last year Samuel was on Novo mix 30/70 insulin. We struggled with this for over a year, and it just wasn't working for us, there is not much room for adjustments. However, since changing to MDI using Novo rapid and Lantus things have been much calmer.
So, imagine how we felt when Samuel woke full of excitement on Christmas morning, opening all of his presents that Santa brought, only to discover on testing that his blood sugar level was 25.6!!!!! Not the level that we wanted to start the day with, but sometimes these things just happen and you have to roll with it. So, we gave a correction dose, and because he was so high he didn't feel that he wanted any breakfast. The day carried on without any drama, that was until dinner time.
On any normal day we are quite regimented in the times which the children eat. Breakfast is at 7:30, lunch is at 12:00 and dinner at 5:00. However, during the school holidays and especially Christmas, routine goes out of the window. He didn't want breakfast, and we missed lunch because we were having an early dinner at 3:00. So by the time we arrived at dinner time his blood sugar was 3.9 as I hadn't given him a snack to compensate the missed lunch. We treated, he had his dinner, then I gave him his injection, taking into account that he had dessert. After his dinner no more food passed his lips, yet at bedtime his sugar level was 23.5!!! Once again, we corrected and off to bed he went, only to come down two hours later complaining of feeling unwell.......2.1!!!!!!

Christmas should be a time of not worrying about how much we eat. Who cares if we eat our bodyweight in chocolate, sweets, nuts and cake. Christmas is a time to relax, let our hair down, and not worry if we gain a few pounds, we can join the gym in January and work it off.
But..... That's not the case for us or for Samuel, or for all the other families that have diabetes in their lives. We still have the carb counting, and the insulin ratios.
So, while others are relaxing and taking Christmas off, please spare a thought for us.....diabetes doesn't play by the rules, and it never takes a break, not even for Christmas.

Tuesday, 21 December 2010

Type of diagnosis......

Following on from my post about the age of diagnosis, I have been thinking about the 'type' of diagnosis, or the 'health' of the child at diagnosis.
Obviously the child is not in particularly good health as they would have been living as an undiagnosed diabetic, which let's face it would have been making them feel very poorly, as well as the weight loss, and the thirst etc. However, we were very lucky with Samuel, he never really got sick, he was never admitted into hospital, and to people who didn't know, on the outside you would never have known he was ill.
Unfortunately that isn't always the case. Some parents have their child diagnosed in much more horrific ways. They don't realise anything is wrong until the child hits the floor and goes into a coma. They carry their child into A & E hours away from death, maybe minutes or sometimes, in the most worst cases they arrive too late.

The way in which diagnosis occurs has to have an impact on how you move forward as a family. I feel lucky that we had the diagnosis we did. Generally speaking I am a laid back person. I try not to worry too much about things that I can't control, and diabetes is something that I can't easily control. Don't get me wrong, I worry every day about Samuel, and obviously I know how serious an illness it is, but because he has never been 'ill' I think that it is all to easy to 'forget' just for a moment.
On the flip side if they were really poorly how do you get that image out of your head? How do you function knowing how close you came to losing them, and knowing how easily it could happen again?

I don't know the answer, all I know is is that we take it one day at a time. We are thankful for the good days, try and learn from the bad, and hope that one day we may have a cure.

Monday, 13 December 2010

Would you want to know?

A couple of months after Samuel was diagnosed I was looking through the JDRF newsletter that I get sent about a trial being run in Cambridge called D-GAP. It is looking at the antibodies of unaffected siblings of a diabetic child diagnosed under the age of 16. By looking at these antibodies we may discover how likely it is that the non affected sibling will develop diabetes.

The first phase of the trial required the sibling (who has to be over the age of 5), to dribble into a pot. Now, I have to admit that Olivia thought it was disgusting, however she did it, even though it took ages! The second phase required a trip to Cambridge to have a blood test done. Not everyone would be called back, and it was going to be completely random. Well Olivia got called back!

So off we went to Cambridge. When I originally filled out the consent forms they asked if I would want to know the results of the blood test, and I said yes. However, it did get me thinking, did I REALLY want to know? What would I gain from the results?
We caught Samuel's diabetes really early, we knew the signs, my husband has been diabetic since 1996. We often randomly test the girls ourselves, I know we probably shouldn't but I bet all of us parents with diabetic children test. So why should I find out?

I think knowledge is power, to be forewarned is to be forearmed, and if I am honest I don't want others knowing something about my child that I don't.

When we went for the test I signed the form to say yes I want to know the results. Olivia was very good at having her blood taken, she didn't make a fuss, and in three months time we will know how many of the three antibodies that they are looking at Olivia has. Hopefully she won't have any, and the likely hood of her going on to develop it will be low. However, the results show otherwise then we will be on the lookout for the signs, like we aways do, randomly test, like we always do, and treat her the same, like we always do.
If she does go on to develop type 1 diabetes then so be it, but we will be ready, and we won't let it beat us.
We do want to know......... but......would you?

Thursday, 9 December 2010

A great thing happened on October 31st!!

A great thing happened on October 31st, and no, not that i was born, although obviously that was a great thing, but that happened in 1974.
On October 31st 1920 there was a discovery by a great man. This discovery enables me to still have my husband, and my son.
It enables thousands of people to carry on living.
This discovery was insulin!

Below is an article taken from CTV news website. http://www.ctv.ca/CTVNews/Health/201030/banting-insulin-101030

Sunday marks 90 years since Banting's idea for insulin

Dr. Frederick Banting (left) and Dr. Charles Best discovered insulin in the 1920s.
Dr. Frederick Banting (left) and Dr. Charles Best discovered insulin in the 1920s.
Dr. Frederick Banting (left) and Dr. Charles Best discovered insulin in the 1920s.

Sir Frederick Banting awoke early on the morning of Oct. 31, 1920 with an idea that some call the most important medical discovery of the 20th century -- insulin.
His discovery would eventually lift a death sentence for millions of people around the globe who suffered from diabetes.
A three-metre-high sculpture by local artist Daniel Castillo is to be unveiled Sunday at Banting's London, Ont., home to mark the milestone's 90th anniversary.
Before Banting's "light bulb moment," the life expectancy for a diabetic was six months to two years. The only treatment offered was a starvation diet.
That changed when Banting came up with his idea by literally sleeping on it, said Grant M. Maltman, curator of Banting House National Historic Site of Canada.
The doctor had prepared a lecture on diabetes that he was to give on Nov. 1. He perused an article about the pancreas while trying to read himself to sleep the night of Oct. 30.
"So he reads the article, turns out the light and then goes to bed," said Maltman.
"And basically at 2 a.m., in his own words, he said 'it was a night of restless sleep. The lecture I prepared and the article I read had chased each other in my mind. At 2 a.m. they came together. I got up. I wrote it down and couldn't stop thinking about it for the rest of the night."'
He jotted down words in a notebook that suggested a connection between the hormone produced by the pancreas and the body's ability to process sugar.
Banting teamed up with Prof. John James Rickard Macleod, Charles Best and Dr. James Bertram Collip at the University of Toronto. Early experiments were on dogs in 1921. The first successful insulin test on a human came in 1922.
Soon after, people began writing letters to Banting and the university asking for insulin supplies, said Maltman.
One letter was from a Quebec man who was told there wasn't enough of a supply to give him but that he could go stay at Toronto General Hospital and receive insulin there. The man did and lived, he said.
Another family gave their teenager a one-way train ticket to Toronto in 1923 so he could get insulin at the hospital.
The same year, at age 32, Banting became the first Canadian -- and youngest person -- to win the Nobel Prize in Physiology or Medicine.
People from 58 countries visited Banting's home in the last year. Some stood in Banting's bedroom and left thank you notes, said Maltman.
"They're writing things like 'Dear Dr. Banting: thank you for giving me an opportunity to live a fulfilling life with my family,' or Dear Dr. Banting: this site is the greatest moment for all children with Type 1. My daughter diagnosed last week at age two deserves to live. Thank you for your gift,"' said Maltman.
Ninety years later, Banting would be disappointed a cure for diabetes hasn't been found, said Maltman.
"We have better insulin today. What we don't have is anything better than insulin and that's why Banting is still regarded around the world as this global hero," he said.
Worldwide, an estimated 285 million people have diabetes.
The incidence of diabetes is on the rise in Canada, according to the Canadian Diabetes Association.
About three million Canadians have diabetes and about six million are prediabetic, said association president and CEO Michael Cloutier.
Untreated, diabetes can lead to complications such as heart attack, stroke, kidney failure, blindness and amputation of limbs.
Good nutrition, weight loss of five to 10 per cent and increased physical activity can delay or prevent diabetes in some people, he said.
Symptoms include extreme thirst, sudden weight change, fatigue, blurred vision and a slow healing process.

Thursday, 2 December 2010

Age at diagnosis.......does it make a difference?

As I have witnessed the two boys in my life both being diagnosed at different times in their lives I feel that I am qualified to answer this question. In my opinion, I think that the age of diagnosis has a big impact on how well you 'deal' with it.

Let me start by telling you briefly about my husbands diagnosis. It was the beginning of January 1996, he was 24. He was a typical bloke, liked his beer and likes a fag. He still does, a little bit too much for my liking. Anyway he had been poorly for while, had lost lots of weight, was, tired, thirsty all the classic signs.It wasn't until his vision started to go that he began to think that there was actually something wrong. We had just registered at a new Dr's, so at our appointments, I mentioned my concerns to the Dr. To cut a long story short, his sugar levels were in the 30s and he was admitted to hospital, and there he stayed for two weeks.
He took the diagnosis very hard, and one to be honest I don't think he has ever really accepted , I don't think he ever will.  At 25 years old you don't really want to be told what you can and can't do, what you can and can't eat, and what you can and can't drink.

Samuel on the other hand seems to be completely different. He was 4 1/2 when he was diagnosed. He was never actually admitted into hospital, as he never really got ill. We noticed on on the day that something was not quite right and we acted on it. Samuel is much more accepting of his diabetes, he just gets on with it, obviously he gets cross sometimes, and has days when he doesn't like being diabetic, but there are not too many of those days. Obviously, this wont always be the case, I am sure when he gets older he will rebel, he wouldn't be a normal teenager if he didn't. However, I will be ready for it! I have had enough practice with his dad!

So in answer to my question, I believe it does make a difference, I have seen it first hand. As much as it pains me to inject Samuel four times a day, I am pleased (if that's the correct word) that he has been diagnosed young, because lets face it, it won't remember living any other way!

Wednesday, 1 December 2010

This really annoys me!! Diabetes is rarely mentioned!!

Now it could just be me, but there are some things that really annoy me about how little is known about type 1 diabetes.
For example, October is breast cancer awareness month, nothing wrong with that, but the media goes mad over it. Tickled pink is everywhere, everyone knows about the pink ribbon, we have the race for life. Don't get me wrong, breast cancer is close to my heart also, my mum was diagnosed two years ago. November is all about prostate cancer, with the normally clean shaven men growing the most strange facial hair! Again all for a good cause. The 1st of December is world AIDS day, everyone on the TV are sporting the red ribbon. These are but a few of the worthy causes that are advertised every day.

However, let's stop and think about this for a moment. How many times was type 1 diabetes mentioned in the media last month?
How many people know the relevance of the date November 14th?

For the record November is diabetes awareness month, November 14th is world diabetes day. Those of us with diabetes in our lives know this, and we turn things blue to mark the day, and try our best to inform people of our cause.

It would be nice for this disease to get more recognition, many people do not know the signs to look out for, they get it confused with type 2, and many don't understand the impact of having type 1 diabetes in the family. Not just for the person who has it, but for the WHOLE family!

So, my aim now, is to raise awareness wherever I go, because there are so many people, young and old who deal with this 'silent killer', there are children dying because they are not being diagnosed correctly, and there are parents, like me, who have to inject their children everyday with insulin, which doesn't cure them, it keeps them alive!

So, please, when you are reading about, cancer, AIDS, and the many other worthwhile causes in the media, remember us, on our own, with not much help trying to save our children

Saturday, 27 November 2010

Remembering the child you used to have.......

I remember in the first week after Samuel was diagnosed the diabetic nurse sat in my living room telling me that some parents have a period of time where they are 'mourning' the 'loss' of the child that they once had. At the time I remember thinking that that statement seemed very extreme. Samuel was still with us, we hadn't lost him, he was the same 4 1/2 year old that he was the previous week.

However, as time goes on, and gets a little bit older, has the odd bad day when he doesn't 'want' to be diabetic, I do find myself thinking 'what if' or 'if only.' I think it is only natural. As a mother I would give anything to take it away from him, who wouldn't?
I know that I can't do anything about it and this is Samuel now, but I do sometimes look at him and think of the Samuel that he was.......
The one, who with two of his sisters sat on the sofa, under the covers eating their body weight in biscuits when they thought we weren't looking. The one who could have the bag of crisps just because he fancied them, and it didn't matter what the time was. The one that could have the sweets that his friend took into school because it was their birthday.
The one who didn't feel tired and unwell because his sugars are low, or bad tempered and can't concentrate because they are high. Or the one who didn't have a care in the world and could enjoy being a child.

Actually, Samuel can enjoy being a child because we do the worrying for him, we do our very best at  levelling his sugar levels so he doesn't feel poorly, and we try to treat him the same as his sisters. He probably won't remember much about his life before diabetes reared its ugly head, but we do. We were obviously chosen for a reason that as yet we don't know, we just have to get on with it.

So, when you sit down and think about it, I don't need to 'mourn' the 'loss' of the Samuel I once had, because he is still with me, and actually is pretty amazing the way he is, the same as his sisters.

Wednesday, 24 November 2010

It could be worse......it's only diabetes.....

These are the dreaded words that parents of diabetic children don't want to hear, and do you know what, when Samuel was first diagnosed I said them myself, and I do sometimes still find myself saying them.

Yes, it could be worse, it could be so much worse. I have a friend who's son has muscular dystrophy, and my heart breaks for them, as he is friends with my daughter and we have known them for about five years. You watch the children in the Great Ormond Street Advert advert, asking for you to donate money each month so that the hospital can carry on its great work to save the children, and yes there are children suffering horrific abuse, injuries and diseases.

But .......Type 1 diabetes is no walk in the park!

This is what diabetes is for us:
  • At least four injections a day,
  • At the very least six finger prick blood tests a day,
  • Hospital appointments every two months, seeing not only the consultant, but the diabetic nurses, the dietitians and the psychologists.
  • The yearly review,
  • The carb counting every meal he eats,
  • The working out the insulin dose using the carb ratios,
  • The good carbs, bad carbs, fast carbs, slow carbs, low GI, high GI
  • The high sugar levels, the low sugar levels, ketones, DKA
  • The constant watching for hypo signs,
  • The constant worry that they may not wake up in the morning, because of dead in bed syndrome,
  • The fact that just because they are  diabetic their life expectancy is reduced by 15-20 years.
  • Its sharps bins, needles, care plans and hypo boxes.
  • Its not being able to go to a friends house for tea, or a sleepover,
  • Its the nightmare of trying to carb count party food.
  • Its growth spurts, the common cold, a stressful day at school.
  • Its sick day rules
It never stops, it never goes away.......
But its ok........It could be worse......Its only diabetes.....

Tuesday, 9 November 2010

November is diabetes awareness month.....30 facts for 30 days

Novemeber is diabetes awareness month, with November 14th being World Diabetes Day.

JDRF are posting 30 facts for 30 days. This means that every day in November they will post a different fact about type 1 diabetes everyday. You can pick up these facts via their facebook page, http://www.jdrf1campaign.org.uk/page.asp?section=91&sectionTitle=30+facts+for+30+days  but if you don't have facebook I will also post them here.

  1. Type 1 diabetes is a chronic, lifethreatening condition which has a lifelong impact of those diagnosed and their families.
  2. Unlike type 2 diabetes, type 1 diabetes is not linked to being overweight, lack of exercise or other lifestyle factors.
  3. Type 1 diabetes affects 350,000 people in the UK, enough to fill Wembley Stadium almost four times over.
  4. Type 1 diabetes oftene strikes in childhood. It stays with people for the rest of their lives.
  5. Type 1 diabetes happens because the body's own immune system attacks cells in the pancreas that produce insulin.
  6. Type 1 diabetes is noone's fault. It can happen to anyone and is not caused by anything they or their parents did or didn't do.
  7. Over 25,000 children in the UK have type 1 diabetes - you would need 48 jumbo jets to take them all on holiday to America.
  8. People with type 1 rely on insulin injections / infusions and up to 10-12 finger prick tests every day just to stay alive.
  9. Incidence of type 1 diabetes is increasing by about 4% each year, and more quickly in children under five.
  10. Type 1 diabetes is 50 to 60 times more common in under 18s than type 2 diabetes.
  11. On average the life expectancy of a person with type 1 diabetes is shortened by 15-20 years.
  12. Insulin pumps can help improve quality of life for people with type 1. But only about 4% of people with type 1 diabetes in the UK currently use insulin pumps, one of the lowest rates of pump therapy in any developed nation. 
  13. People with type 1 diabetes in Blackburn (17%) are 42 times more likely to get a pump than people in Luton (0.4%).
  14. 14 November is World Diabetes Day. On this day seven people in the UK will be diagnosed with type 1 diabetes.
  15. The peak age for diagnosis of type 1 diabetes in the UK is 10-14 years but is becoming younger
  16. Incidence of type 1 diabetes has increased five - fold in the under five group in the last 20 years.
  17. Half of people with type 1 diabetes in the UK are diagnosed under the age of 15 and 90% are diagnosed by 30.
  18. Common signs of type 1 diabetes are thirst, frequent urination, tiredness, weight loss, ketones (pear drop smell on breath).
  19. Worldwise, 70,000 children (aged 14 and under) develop type 1 diabetes each year.
  20. Finland has the highest rate of type 1 diabetes in the world.
  21. Type 1 diabetes is 30 times more common in Scandinavia than in Japan, which has one of the lowest rates of the condition globally.
  22. 85% of people who develop type 1 diabetes have no relative with it. However, genetic factors pre-dispose people to developing it.
  23. Today we know of more than 50 genes that are associated with the risk of developing type 1 diabetes.
  24. More men have type 1 diabetes in Scotland compared with women - 56.1% compared with 43.9%
  25. 20 years after diagnosis, nearly all people with type 1 diabetes will have some evidence of retinopathy.
  26. Long term complications of type 1 diabetes include heart disease, stroke, blindness, kidney failure and limb amputation.
  27. There are very few foods that someone with type 1 diabetes cannot eat and no special foods are required.
  28. An hour of research into type 1 diabetes costs around £60. Every bit of research brings us a step closer to finding a cure.
  29. The incidence of type 1 diabetes in the UK has doubled every 20 years since 1945.
  30. On a global level JDRF has dedicated over £850 million to research into type 1 diabetes over the past 40 years.
So there you have it some facts that you probaby already knew and some you didn't. JDRF do a fantastic job raising vital funds so that maybe, one day we will have a cure for our children

Thursday, 21 October 2010

The curse of pizza!


Nothing horrible about that you may think, they look and smell so good, the melted cheese mmmmm. Yep thats what we thought, most children love pizza, all four of mine do.
However, what it does to a diabetics blood glucose levels is another story altogether. It is the food of the devil, a monster in our mist, it is the thing that nightmares are made of. It will have us parents pacing the floorboards all night scratching our heads, and wondering why once again we let them eat it.

The simple answer to this question is that we don't want to say NO to our children again. We are always saying 'you can't eat that', 'its full of sugar', 'I've not carb counted that, so no' it goes on and on. Our heart breaks at the fact that our children can not be carefree about their food, can't  have a bag  of crisps just because they fancy them. So when they look at us with their sad eyes, and ask for the pizza, we give in and say yes.

Then the fun begins.....

High fat foods such as pizza can cause a delay in the absorption of the carbohydrates for 2-3 hours after eating and can elevate the blood sugar for up to 8 hours.

So..... what does that mean? Simply put it means that because the body is working at digesting the fat first it doesn't work on the carbs. Meanwhile, the insulin is starting to work on the carbs that aren't there yet which in turn results in a hypo! This hypo needs to be treated, so extra carbs are given. This raises the blood sugars levels (obviously! Thats why we give it), the blood sugars continue to rise as the body is now begining to absorb the carbs from the pizza, however by now the insulin levels have peaked and are now on their way down, so there is not enough to work on the carbs, and this results in the high levels for up to eight hours!

So there you go, that is why I think that pizza is the food of the devil! Even though I know  all of the above is going to happen, I also know that when a certain young man requests pizza for his dinner he will have it, and enjoy every mouthful

Wednesday, 6 October 2010

The tale of a cunning diabetic five year old

Once upon a time there was a little boy called Samuel. He was 5 years old and lived with his mummy, daddy, and three sisters. Sadly, Samuel was diagnosed with type 1 diabetes in March 2009, however, he amazed everyone around him with his maturity, and ability to not let diabetes get in the way.
Well, Samuel went back to school in Septemebr this year, where he started in year 1. He had a lovely new teacher, who although was slightly nervous, was confident that diabetes would not cause a problem in his classroom. It didn't, well not for the first two weeks anyway. It was on the third week that things began to go wrong.
Samuels mummy got a phonecall at work, from a concerned mid day at the school 'Samuels sugar level was 31!!!!!! What should they do?' She also explained that Samuel had suffered two hypos earlier in the day. 'Well that explains it' thought mummy, Samuel has rebounded, not to worry, check for ketones and he will be fine. Mummy was then very stresed at work. she couldn't concentrate, so she phoned the diabetic nurses. They assured mummy that it was just one of those things, and it just happens sometimes. Mummy relaxed a little bit.
The next day, mummy was off work, once again she got a call at lunchtime to say that Samuels sugar was 30.5!!!!! An hour later it was so high that the machine couldn't cope!!!!!Again, he had had two hypos earlier in the day. Mummy phoned the nurses again, who e mailed the consultant to ask for advice. They suggested to cut back on the morning doses, and maybe this would stop the hypos, which in turn would stop the highs.
Mummy was tired, and completely stressed. The teacher looked physically drained, and the head said that Samuel looked poorly.
This carried on for the rest of the school week. School were doing a fantastic job, mummy and daddy were stressed and worried, and so were the rest of the family.

The next week, on the Monday, mummy went to the drs, as she felt she couldn't cope. The dr signed mummy off work for two weeks, and gave her a prescription for some tablets. Samuels sugars, again, were really bad and the nurses and the consultant were thinking about admitting him to hospital, but had one last thing to try.
The next day, mummy went into school to look at the blood glucose machines. She wanted to check that the numbers in the book, were the same as the numbers stored on the machine. You see Samuel, although only 5, was a very clever young man. He had tried to catch his mummy and daddy out, by scrolling back on his machine to find a hypo number. He did this so that he could have a juice and two biscuits, as this was the way that his hypos were treated. Daddy thought that maybe this was what he was doing at school, although mummy didn't think that this was possible.
So mummy looked at Samuels machine and checked the readings against the book, and her heart sank. None of the hypo readings were on the machine. She asked the teacher if Samuel was watched when testing his blood, and did the machine have a strip in it when shown. The teacher replied that most of the time he was watched, but not always, and sometimes the strip wasn't there as Samuel had already put it in the sharps bin. Mummy explained to the teacher what had really been going on.
Mummy was now a complete wreck, she sat in the office in shock!!!!!!!! She couldn't believe what her darling litle boy had been doing!! The lovely lady in the office went and got Samuel from his classroom so mummy could ask Samuel if he had infact been fooling everyone.
Mummy sat down and asked Samuel if he had been scrolling back his machine, and with a tear in his eye he replied 'yes'. Mummy, broke down, she was relieved that there was nothing wrong, but cross because what he was doing was so dangerous!!!!

His teacher now watches Samuel like a hawk, but feels slightly wiser for the experience!
Mummy still cant believe how cunning, and infact clever her little boy is.
Samuel......... well, he did it just because he wanted a juice and a biscuit!!!!!

Diabetes is a horrible illness, and our young children just don't understand how serious, and dangerous it is. We never told Samuel about the bad things that can happen in the future, as we though it was important for him to just be a 5 year old and not to worry.
What this last week has shown me is that diabetic children, sometimes can be cunning, and sneaky, just to get what other children take for granted, but in doing so take great risks with their health.