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.
Thursday 30 June 2011
Saturday 18 June 2011
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
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
Friday 17 June 2011
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.
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.
Thursday 16 June 2011
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.
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.
Wednesday 15 June 2011
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.
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.
Tuesday 14 June 2011
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.
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.
Monday 13 June 2011
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.
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.
Sunday 12 June 2011
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.
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.
Saturday 11 June 2011
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.
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.
Saturday 4 June 2011
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.
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.
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