My aim was to submit a new post everyday however i have done the one thing that I have said you shouldn't. I have been pushing myself too hard.
I spent the majority of my Saturday lying in bed with the frequent dash to the bathroom. Vomiting when there is nothing left in your system is horrible and painful. Basically you a heaving the stomach acid. I am better today but my balance is completely off and getting dressed when your arms feel too heavy to lift is a mild challenge.
I spent most of the day passed out. Jumper and trousers on, under a quilt with a fan. My body was oblivious to the 21C outside. I did not realise that our Dog had spent most of the day lying on top of me and licking my face. She must have known as usually she would be in the garden checking her territory. Every time I wanted to say something It would not come out which made me frustrated. This wasted the energy I had and made speaking even more difficult. My fiancee forced me to sip lucozade and it took almost 2 hours to eat a doughnut. Not a problem I usually have.
So how did this happen? Simply, I pushed myself.
My day starts at 6am when I get up and walk the dog. I then get myself ready for work and am there by 7.30am to open the door for the staff starting at 8am. I will then work until 12pm when I drive home to let the dog out and give her some fuss. I then drive back to work and get there for about 12.27pm. My job is fairly demanding and I rarely go home within my contracted hours, or if I do, I will bring some work home with me. As soon as I am home the dog needs walking again and feeding, the tea needs to be made, and a bit of house work. I will then pop on my laptop, do a bit of work or go out for a walk to clear my mind. Get in the shower and before you know it its 9pm. I work the occasional saturday however there are weddings to be planned, birthday celebrations, parking to be sorted, grocery shopping, bills to pay and file, cleaning etc. I do not stop. I do not seem to have time to have a social life of my own.
Yes this may be completely typical for most people, that's life! But most people do not have MCAD, most people are able to produce the energy they need. Most people do not have to think about their physical and mental exertions. I over did. I am my own worst enemy when it comes to sitting down and stopping. There is always something that needs to be done. Life would be great if we were all wealthy enough to have a house keeper! It can be very frustrating when everyone else seems to be able to keep going all the time and I have to stop and rest. Sometimes it does make me feel like I am 87 not 27 but as I have said previously you have to play the cards that life dealt you. I do wish that I could pick another hand sometimes!
Note to self. Be less self destructive and learn to sit down!
Sunday 30 June 2013
Thursday 27 June 2013
MCAD and Food
The most important thing anyone with MCAD must do, or someone who knows a person with MCAD, is to make sure that you regularly eat. Due to our bodies inability to metabolise fats into energy we need a constant intake of fuel.
It is recommended that people with MCAD eat every 4 hours. I am terrible with this and always forget. I eat when I am hungry however I do always have sugary drinks throughout the day to keep the fire burning.
Complex carbohydrates are your friend. So think brown, wholemeal foods. Some people do not like brown bread, rice etc as they are used to the white varieties. You just need to retrain your brain. It is worth it. The complex carbohydrates take longer to break down giving your body a slower release of energy. This helps to stabilise the blood sugar until your next meal.
Always keep cereal bars, glucose tablets etc to hand.If you are out for the day make sure to take some supplies with you as you never know when you may get caught out and need something to keep you going. I have been caught out before and you start to panic.
With regards to eating every 4 hours, this is not possible unless you want to get up in the night. My dietician suggested I eat a sandwich before bed. With that amount of carbs I would never sleep! I always start the day with a pint of fresh fruit smoothie and a shot of Aloe Vera. The natural sugars in the fruit will give you the instant hit you need from fasting all night and the Aloe is great for your digestive system. Alongside this you can have some slow release carbs with that. Perhaps a bowl of porridge.
Avoid foods containing dairy products. Current research has found that they contain a particular fat (mono-triglycerides) that people with MCAD can not process. This then sits on the Liver and can make you feel quite ill. Over time the build up of fats can lead to Liver problems. This is different to being lactose intolerant, so check the label.
I love milk and cheese. The dairy free options are not great but considerably better than what they used to be. Soya milk is a great alternative and you can buy it with added calcium. If like me you do not like the taste of natural soya milk, try the flavoured varities. The chocolate flavour tastes the same as a regular milkshake. Dairy free cheese is not wonderful however the soft spread varities are pretty good. If you buy a flavoured variety such as sweet chilli or chive, you would not know it was dairy free. The hard cheeses have a rubbery texture and leave a chalk like taste in your mouth. I would avoid these until they bring out some 'new and improved' brands.
And no chocolate or ice cream! Have sorbet instead.
It is surprising how many foods contain milk. The other day a put a bag of popcorn back on the shelf as it contained milk.Do check the packaging. There are a lot of foods that appear to be be natural, no additives etc. When you read the list of ingredients you will be surprised. I had a 'health bar' the other day labelled as 'Strawberry'. When I read the ingredients the strawberry was 1%.
I also avoid wheat as my Dietician believes I have an intolerance to it. Believe it or not, it is harder to find wheat free foods than dairy free!
Coconut, Palm and Lard are other 'foods' that should be avoided due to the fat.
I have read papers written by a number of specialists that warn parents (as I am yet to find any publishing's about adults with MCAD) about their MCAD child and obesity. I would not worry about this. I am a perfect weight for my height and have never been particularly over or under weight. You just have to be sensible and keep on top of it. Do not buy into fad foods aimed at weight control or calorie counting. When you have MCAD you do not need to worry about calories. You need to worry about not getting enough. Plus they never work but I won't get on my 'soap box' about that!
My advice;
It does not have to be expensive. Local farm shops are a great place to buy and only provide seasonal produce. You know you are putting the best into your body, you get some great offers and every time you go, there is something different.
If I find any goods foods, I will let you know!
It is recommended that people with MCAD eat every 4 hours. I am terrible with this and always forget. I eat when I am hungry however I do always have sugary drinks throughout the day to keep the fire burning.
Complex carbohydrates are your friend. So think brown, wholemeal foods. Some people do not like brown bread, rice etc as they are used to the white varieties. You just need to retrain your brain. It is worth it. The complex carbohydrates take longer to break down giving your body a slower release of energy. This helps to stabilise the blood sugar until your next meal.
Always keep cereal bars, glucose tablets etc to hand.If you are out for the day make sure to take some supplies with you as you never know when you may get caught out and need something to keep you going. I have been caught out before and you start to panic.
With regards to eating every 4 hours, this is not possible unless you want to get up in the night. My dietician suggested I eat a sandwich before bed. With that amount of carbs I would never sleep! I always start the day with a pint of fresh fruit smoothie and a shot of Aloe Vera. The natural sugars in the fruit will give you the instant hit you need from fasting all night and the Aloe is great for your digestive system. Alongside this you can have some slow release carbs with that. Perhaps a bowl of porridge.
Avoid foods containing dairy products. Current research has found that they contain a particular fat (mono-triglycerides) that people with MCAD can not process. This then sits on the Liver and can make you feel quite ill. Over time the build up of fats can lead to Liver problems. This is different to being lactose intolerant, so check the label.
I love milk and cheese. The dairy free options are not great but considerably better than what they used to be. Soya milk is a great alternative and you can buy it with added calcium. If like me you do not like the taste of natural soya milk, try the flavoured varities. The chocolate flavour tastes the same as a regular milkshake. Dairy free cheese is not wonderful however the soft spread varities are pretty good. If you buy a flavoured variety such as sweet chilli or chive, you would not know it was dairy free. The hard cheeses have a rubbery texture and leave a chalk like taste in your mouth. I would avoid these until they bring out some 'new and improved' brands.
And no chocolate or ice cream! Have sorbet instead.
It is surprising how many foods contain milk. The other day a put a bag of popcorn back on the shelf as it contained milk.Do check the packaging. There are a lot of foods that appear to be be natural, no additives etc. When you read the list of ingredients you will be surprised. I had a 'health bar' the other day labelled as 'Strawberry'. When I read the ingredients the strawberry was 1%.
I also avoid wheat as my Dietician believes I have an intolerance to it. Believe it or not, it is harder to find wheat free foods than dairy free!
Coconut, Palm and Lard are other 'foods' that should be avoided due to the fat.
I have read papers written by a number of specialists that warn parents (as I am yet to find any publishing's about adults with MCAD) about their MCAD child and obesity. I would not worry about this. I am a perfect weight for my height and have never been particularly over or under weight. You just have to be sensible and keep on top of it. Do not buy into fad foods aimed at weight control or calorie counting. When you have MCAD you do not need to worry about calories. You need to worry about not getting enough. Plus they never work but I won't get on my 'soap box' about that!
My advice;
- Eat natural, home made meals. You do not know what is in packet food which is risky if you have MCAD.
- Complex Carbohydrates are your friend.
- Keep a cereal bar/ snacks on you.
- DO NOT eat Dairy, Coconut, Palm or Lard products.
- If you do not replace dairy with foods containing added calcium, take a calcium supplement, particularly if you are a woman.You do not want to add osteoporosis to your list of ailments!
It does not have to be expensive. Local farm shops are a great place to buy and only provide seasonal produce. You know you are putting the best into your body, you get some great offers and every time you go, there is something different.
If I find any goods foods, I will let you know!
Tuesday 25 June 2013
MCAD and Growing Up
Growing up I did not realise I was different from any other child, just that I was unlucky in catching most of the 'bugs' that went around. This did mean missing school which I was not happy about however I did not mind too much as I knew I would spend the day on the sofa, wrapped in a blanket, a big bottle of lucozade, bag of sweets and my favourite Disney movies...... not too much has changed there!
It was an accumulation of little things that started to make me realise. The first one being that none of the other children were allowed sweets when they were ill nor were they off school as often as I was. I continuously had tonsillitis and eventually had my adenoids removed. I used to go through phases of what my mum called 'growing pains'. Mum would have to massage my legs as I would cry with the pain. I still get these and obviously I am no longer growing. It is a build up lactic acid in the muscles which is one of the traits of MCAD.
I also continuously had terrible ear infections and bad hearing. For years I was taken to and from the ENT specialist. They put gromits (small tubes that open the ear canal) in each ear, I had to sit in one of those horrid booths and click a button every time I heard a noise (I am certain this has given me mild tinnitus) and constantly had magnifying glasses shoved in my ears. After approximately 7 years the diagnose 'she is probably just daydreaming'. Really????
I have recently learnt that specialists believe people with MCAD are susceptible to inner ear problems (I agree) and degenerative heart disease (I damn well hope not).
The second realisation that I was different was when I reached the end of Primary School and as a treat the school would take the 'Leavers' on a week away. My mum sent my paperwork back with lots of forms and on the day of departure I was given lots of energy sweets, as were the Teachers. Throughout the trip the Teachers were constantly asking me if I was OK. I thought there must have been something wrong with them to keep asking me.
It was at this point I was told that I had MCAD and that it meant I was different but I did not understand why. All I knew, keeping eating sweets.
As I started secondary school and puberty set in (what a pleasant experience that is!) for the first time I started to notice I was different. As your body changes and your brain rewires itself for adulthood a lot of energy is used up. I became easily tired out. I had to wear a Medic Alert bracelet for the first time. Teachers would tell me off for wearing jewellery and then when I showed them what it was, the other girls would make a fuss. I had to keep energy tablets in my bag, the other girls thought these were sweets and would harass me to have one. In the end I became so conscious of being different, I dumped the sweets and took off the bracelet. Once at school my reserves were so low I asked friends if they had any food they could give me. No. I asked if they could take me to the shop so I could buy something to eat. No. I slumped in a locker room and cried, barely enough energy to lift my own arms. I did not know what to do. I called my mum, who called the school. A teacher found me and gave me a cereal bar.
That was a traumatic experience.
It was at this time also that I went to Cardiff University Hospital which has a Metabolic Genetics department. Here I met my Consultant and Dietician, who thought it would be a good idea to tell me, at 13yrs old, 'when you have a baby you can be our Guinea Pig'. WHAT??? That has forever haunted and frightened me. I have 'sacked' them now. They finally got the hint that I would no longer attend the appointments. On every occasion I have been ill and the on-call Doctor has tried to contact them for help, they were either unavailable or not there at all. My Dietician told me I could not eat Coconut. I asked why 'because your not supposed too'. Wow, thanks. That's a great answer. They were more concerned about taking samples of blood, trying drugs, measuring this, that and everything else but they could not offer support and help to me. I think I will stick with Mum thank you.
As a teenager I had/have terrible skin and cramps were a constant problem. I was told I would grow out of both. That was 15 years ago. I am trying my second treatment for Acne and have to avoid certain foods and have an implant for the cramps. I believe underlying all of this is the MCAD. If it can cause problems in your inner ear why not your skin, digestive and reproductive organs? I am the only member of my family past and present, to have had the problems I have. Usually these things are hereditary.
Every month like clockwork us ladies have a great time.....not. From the age of 13 - 24, I spent one week each month lying in the bath tub with my head over the toilet throwing up bile as there was nothing else left in me. I would be as white as a sheet, sweating, weak and exhausted. That works out to be approximately 572 weeks or 4004 days vomiting. I had been assessed by almost every gynaecologist in the county, given every type of pill and pain killer. Nothing worked. Again I was told I would grow out of it. This did not happen and each time I would almost breakdown crying at the hospital. They did not understand that with MCAD it was dangerous to my health to be this ill each month. Some months were so bad my eyes would glaze over and I had not enough energy to support my own head.
After years of my constant campaigning to the doctors, a new treatment came in. Success something seemed to work. Then as always the cramps, nausea and lethargy came back. This time the diagnosis was IBS. Bollocks to that. It has to be the MCAD. It does not take 14 years to diagnose IBS. This just proves the point that MCAD is still very unknown. Guess what? The cramps and nausea have still not disappeared but are not as violent as they were.
Starting University and leaving home was the hardest thing I have ever done. The first time I had to look after myself 100%. This was the second time I trialled the drug 'L-carnitine'. It didn't work. When my Mum and I were filling out all the paperwork, we went into great detail about my condition. It was decided by my local council that i would get and extra £30 a week to help cover the food I needed. They also classified me as Disabled. I do not remember filing out that part of the form!
The following year we repeated the form, as you must, only this time it was decided I was not disabled and that I was entitled to no extra help. I am not quite sure what changed, it certainly was not me.
I found at University I was met by ignorance when it came to explaining my condition. The amount of times I have been asked 'Will you die?'. Firstly, that's rude. Secondly, yes I will, as we all will. Again I learnt the best thing to do was keep it quiet and get on with it. This led to my Mum and Step-dad driving to my University to bring me home. I became depressed I suppose. There I was trying to make my own way and failing miserably. I thought I would never be able to stand on my own two feet. I was signed off my course and I took the decision to quit, come home and start over.
I still made a lot of mistakes and tried to push myself so that I could keep up with my peers but my body could not handle it. It took almost 6 years of learning about myself, my limits, my alcohol tolerance, my body's warning signs, to finally be comfortable knowing that I can deal with my MCAD. I still have moments of worry but I have learnt to accept that I am different. I have learnt that people are ignorant of things which are different and it is my responsibility to educate them.
It was an accumulation of little things that started to make me realise. The first one being that none of the other children were allowed sweets when they were ill nor were they off school as often as I was. I continuously had tonsillitis and eventually had my adenoids removed. I used to go through phases of what my mum called 'growing pains'. Mum would have to massage my legs as I would cry with the pain. I still get these and obviously I am no longer growing. It is a build up lactic acid in the muscles which is one of the traits of MCAD.
I also continuously had terrible ear infections and bad hearing. For years I was taken to and from the ENT specialist. They put gromits (small tubes that open the ear canal) in each ear, I had to sit in one of those horrid booths and click a button every time I heard a noise (I am certain this has given me mild tinnitus) and constantly had magnifying glasses shoved in my ears. After approximately 7 years the diagnose 'she is probably just daydreaming'. Really????
I have recently learnt that specialists believe people with MCAD are susceptible to inner ear problems (I agree) and degenerative heart disease (I damn well hope not).
The second realisation that I was different was when I reached the end of Primary School and as a treat the school would take the 'Leavers' on a week away. My mum sent my paperwork back with lots of forms and on the day of departure I was given lots of energy sweets, as were the Teachers. Throughout the trip the Teachers were constantly asking me if I was OK. I thought there must have been something wrong with them to keep asking me.
It was at this point I was told that I had MCAD and that it meant I was different but I did not understand why. All I knew, keeping eating sweets.
As I started secondary school and puberty set in (what a pleasant experience that is!) for the first time I started to notice I was different. As your body changes and your brain rewires itself for adulthood a lot of energy is used up. I became easily tired out. I had to wear a Medic Alert bracelet for the first time. Teachers would tell me off for wearing jewellery and then when I showed them what it was, the other girls would make a fuss. I had to keep energy tablets in my bag, the other girls thought these were sweets and would harass me to have one. In the end I became so conscious of being different, I dumped the sweets and took off the bracelet. Once at school my reserves were so low I asked friends if they had any food they could give me. No. I asked if they could take me to the shop so I could buy something to eat. No. I slumped in a locker room and cried, barely enough energy to lift my own arms. I did not know what to do. I called my mum, who called the school. A teacher found me and gave me a cereal bar.
That was a traumatic experience.
It was at this time also that I went to Cardiff University Hospital which has a Metabolic Genetics department. Here I met my Consultant and Dietician, who thought it would be a good idea to tell me, at 13yrs old, 'when you have a baby you can be our Guinea Pig'. WHAT??? That has forever haunted and frightened me. I have 'sacked' them now. They finally got the hint that I would no longer attend the appointments. On every occasion I have been ill and the on-call Doctor has tried to contact them for help, they were either unavailable or not there at all. My Dietician told me I could not eat Coconut. I asked why 'because your not supposed too'. Wow, thanks. That's a great answer. They were more concerned about taking samples of blood, trying drugs, measuring this, that and everything else but they could not offer support and help to me. I think I will stick with Mum thank you.
As a teenager I had/have terrible skin and cramps were a constant problem. I was told I would grow out of both. That was 15 years ago. I am trying my second treatment for Acne and have to avoid certain foods and have an implant for the cramps. I believe underlying all of this is the MCAD. If it can cause problems in your inner ear why not your skin, digestive and reproductive organs? I am the only member of my family past and present, to have had the problems I have. Usually these things are hereditary.
Every month like clockwork us ladies have a great time.....not. From the age of 13 - 24, I spent one week each month lying in the bath tub with my head over the toilet throwing up bile as there was nothing else left in me. I would be as white as a sheet, sweating, weak and exhausted. That works out to be approximately 572 weeks or 4004 days vomiting. I had been assessed by almost every gynaecologist in the county, given every type of pill and pain killer. Nothing worked. Again I was told I would grow out of it. This did not happen and each time I would almost breakdown crying at the hospital. They did not understand that with MCAD it was dangerous to my health to be this ill each month. Some months were so bad my eyes would glaze over and I had not enough energy to support my own head.
After years of my constant campaigning to the doctors, a new treatment came in. Success something seemed to work. Then as always the cramps, nausea and lethargy came back. This time the diagnosis was IBS. Bollocks to that. It has to be the MCAD. It does not take 14 years to diagnose IBS. This just proves the point that MCAD is still very unknown. Guess what? The cramps and nausea have still not disappeared but are not as violent as they were.
Starting University and leaving home was the hardest thing I have ever done. The first time I had to look after myself 100%. This was the second time I trialled the drug 'L-carnitine'. It didn't work. When my Mum and I were filling out all the paperwork, we went into great detail about my condition. It was decided by my local council that i would get and extra £30 a week to help cover the food I needed. They also classified me as Disabled. I do not remember filing out that part of the form!
The following year we repeated the form, as you must, only this time it was decided I was not disabled and that I was entitled to no extra help. I am not quite sure what changed, it certainly was not me.
I found at University I was met by ignorance when it came to explaining my condition. The amount of times I have been asked 'Will you die?'. Firstly, that's rude. Secondly, yes I will, as we all will. Again I learnt the best thing to do was keep it quiet and get on with it. This led to my Mum and Step-dad driving to my University to bring me home. I became depressed I suppose. There I was trying to make my own way and failing miserably. I thought I would never be able to stand on my own two feet. I was signed off my course and I took the decision to quit, come home and start over.
I still made a lot of mistakes and tried to push myself so that I could keep up with my peers but my body could not handle it. It took almost 6 years of learning about myself, my limits, my alcohol tolerance, my body's warning signs, to finally be comfortable knowing that I can deal with my MCAD. I still have moments of worry but I have learnt to accept that I am different. I have learnt that people are ignorant of things which are different and it is my responsibility to educate them.
Monday 24 June 2013
Your Views
So firstly thank you to those who have had a look at the blog.
Secondly thank you for pointing out the spelling. I might add that this is my online diary and not a piece of prize winning literature. I do not spell check, I think, I type, I post. My writing style is very much the way in which I speak... sometimes backwards!
So I have been thinking away about different posts and have come up with the following;
I was speaking with my mum today who often looks online to see what new information is available with regards to MCAD.
'I can't believe there is still so little out there, it was only discovered in 1983 we were lucky'
Mum I know.......hence the reason I decided to start my own blog and keep a publicly accessible diary of my thoughts, feelings and living with this condition.
Let's clear one thing up at the start of this venture, people with MCAD are not 'suffering with MCAD'. We are not victims. We were simply dealt a different hand of cards to play. Unfortunately there is no rule book and we play 'off the cuff' but give us our dignity and do not call us 'sufferers'.
You would not refer to someone with dwarfism 'a sufferer' nor would you call a person in a wheel chair 'a sufferer' . So do not label us.
I believe that there is a reason for everything. I would not re-write the rules to be born any differently from what I am. I have experienced a whole lot more in my life at 27 than most. If anything having MCAD will make you stronger as a person.You learn to take control of your life, you learn the value of life and you learn to fight. Not literally of course. Having a condition such as MCAD, which is still unknown, means you have to stand on your own two feet and shout to be heard. You can not be submissive or you will not survive.
As someone with MCAD I ask that you recognise us, support us and help to increase research.
Once again I have gone off on a tangent but you get the idea!
Secondly thank you for pointing out the spelling. I might add that this is my online diary and not a piece of prize winning literature. I do not spell check, I think, I type, I post. My writing style is very much the way in which I speak... sometimes backwards!
So I have been thinking away about different posts and have come up with the following;
- MCAD and the body
- MCAD and stress
- MCAD a mothers perspective
- MCAD and alcohol
- MCAD and pregnancy
- MCAD and food
- MCAD and illness
- MCAD and publicity
- MCAD and other people
- MCAD and exercise
I was speaking with my mum today who often looks online to see what new information is available with regards to MCAD.
'I can't believe there is still so little out there, it was only discovered in 1983 we were lucky'
Mum I know.......hence the reason I decided to start my own blog and keep a publicly accessible diary of my thoughts, feelings and living with this condition.
Let's clear one thing up at the start of this venture, people with MCAD are not 'suffering with MCAD'. We are not victims. We were simply dealt a different hand of cards to play. Unfortunately there is no rule book and we play 'off the cuff' but give us our dignity and do not call us 'sufferers'.
You would not refer to someone with dwarfism 'a sufferer' nor would you call a person in a wheel chair 'a sufferer' . So do not label us.
I believe that there is a reason for everything. I would not re-write the rules to be born any differently from what I am. I have experienced a whole lot more in my life at 27 than most. If anything having MCAD will make you stronger as a person.You learn to take control of your life, you learn the value of life and you learn to fight. Not literally of course. Having a condition such as MCAD, which is still unknown, means you have to stand on your own two feet and shout to be heard. You can not be submissive or you will not survive.
As someone with MCAD I ask that you recognise us, support us and help to increase research.
Once again I have gone off on a tangent but you get the idea!
Sunday 23 June 2013
So what is MCAD?
So It would make sense to explain what MCAD is for those who may stumble across this blog by accident. I presumme most have typed MCAD into google, as I have done so many times hoping something new will pop up!
Medium-chain acyl-CoA dehydrogenase deficiency, more commonly known as MCAD deficiency is a disorder of fatty acid oxidation that impairs the body's ability to break down medium-chain fatty acids into acetyl-CoA. The disorder is characterized by hypoglycemia and sudden death without timely intervention, most often brought on by periods of fasting, vomiting or illness. Prior to further screening of newborns, MCADD was an under diagnosed cause of sudden death in infants. Individuals who have been identified prior to the onset of symptoms have an excellent prognosis.
Basically, an individual with MCAD cannot produce their own energy which is why they need to keep on top of the food thing. Stress on the body or mind can cause the body to use up its energy supply quickly this is when those with MCAD get into trouble. It is different for each individual. Some individuals have a decent level of Carnitine to help the breakdown of fatty acids some of us (aren't I lucky) have practically nothing.
MCAD is an inherited deficiency and typically most prevalent in individuals of Northern European Caucasian descent.
There is no treatment or cure (despite what an ex 'religious' friend of mine told me. Emphasis on EX. God cannot alter my DNA). Avoid fasting and keep up the blood glucose particularly in stressful situations such as exercise and illness....sounds simple. I wish!
Some Doctors recommend treatment with L-Carntine, I found this did not help. The incorrect dosage can make you smell like a fish. I was asked to trial this for my Doctors but had to pay for it. Thank you NHS, I did not know Guinea Pigs paid! Not only did I have to pay for a drug that THEY wanted to test but each time I went to the pharmacy it was a nightmare. The pharmacist would ask what it was, I would explain, of course they had never heard of MCAD. Then they would ask their colleagues, then they would get their books out, then call the Consultant.....and on and on and on. A month later it would arrive. With each repeat prescription the fun would start again.
From my own research I have found that foods containing mono -triglycerides should be avoided. These fats will sit on the liver. Having cut these foods out myself it has made a huge difference to my well being. Foods containing this fat are; all dairy products (cow, buffalo, goat and anything else you want to milk), palm products, coconut and anything made with or cooked in lard.
I must stress I am no Doctor however this condition was unheard of when I was diagnosed. I have gained understanding about it at the same rate as the professionals. They may have labs and computers with a higher IQ than myself but nothing beats first hand experience or a human test subject. Me.
The best treatment is look after yourself, keep some glucose tablets on you and wear a medic alert tag if you are out and about. If you are in hospital, even if it is something routine, do not expect any of the medical staff to know what it is and demand they contact YOUR Consultant. Do not take NO for an answer. BELIEVE ME.
Medium-chain acyl-CoA dehydrogenase deficiency, more commonly known as MCAD deficiency is a disorder of fatty acid oxidation that impairs the body's ability to break down medium-chain fatty acids into acetyl-CoA. The disorder is characterized by hypoglycemia and sudden death without timely intervention, most often brought on by periods of fasting, vomiting or illness. Prior to further screening of newborns, MCADD was an under diagnosed cause of sudden death in infants. Individuals who have been identified prior to the onset of symptoms have an excellent prognosis.
Basically, an individual with MCAD cannot produce their own energy which is why they need to keep on top of the food thing. Stress on the body or mind can cause the body to use up its energy supply quickly this is when those with MCAD get into trouble. It is different for each individual. Some individuals have a decent level of Carnitine to help the breakdown of fatty acids some of us (aren't I lucky) have practically nothing.
MCAD is an inherited deficiency and typically most prevalent in individuals of Northern European Caucasian descent.
There is no treatment or cure (despite what an ex 'religious' friend of mine told me. Emphasis on EX. God cannot alter my DNA). Avoid fasting and keep up the blood glucose particularly in stressful situations such as exercise and illness....sounds simple. I wish!
Some Doctors recommend treatment with L-Carntine, I found this did not help. The incorrect dosage can make you smell like a fish. I was asked to trial this for my Doctors but had to pay for it. Thank you NHS, I did not know Guinea Pigs paid! Not only did I have to pay for a drug that THEY wanted to test but each time I went to the pharmacy it was a nightmare. The pharmacist would ask what it was, I would explain, of course they had never heard of MCAD. Then they would ask their colleagues, then they would get their books out, then call the Consultant.....and on and on and on. A month later it would arrive. With each repeat prescription the fun would start again.
From my own research I have found that foods containing mono -triglycerides should be avoided. These fats will sit on the liver. Having cut these foods out myself it has made a huge difference to my well being. Foods containing this fat are; all dairy products (cow, buffalo, goat and anything else you want to milk), palm products, coconut and anything made with or cooked in lard.
I must stress I am no Doctor however this condition was unheard of when I was diagnosed. I have gained understanding about it at the same rate as the professionals. They may have labs and computers with a higher IQ than myself but nothing beats first hand experience or a human test subject. Me.
The best treatment is look after yourself, keep some glucose tablets on you and wear a medic alert tag if you are out and about. If you are in hospital, even if it is something routine, do not expect any of the medical staff to know what it is and demand they contact YOUR Consultant. Do not take NO for an answer. BELIEVE ME.
Tiredness
Big Yawn........
MCAD makes you tired. The inability to create ones own energy is a constant reminder that I am different.
10 hours sleep last night and I could probably have done with another 2hrs but the dog is not going to walk herself!
Coping with tiredness is much the same as any other person just multiply the need by 4! Whilst I was studying for my A-levels and then for my Degree afternoon naps were a life saver. Doctors recommend eating every 4 hours but I have a demanding job and a home to run. I am terrible at putting my own needs first.
However word of warning, do not push it. I do and its not a good idea. Your reserves fail, your limbs become like spaghetti and you slur your words (like a drunk).....shut down! Well this is how it manifests itself in me everyone has different warning signs. Not only do you need a massive glucose hit and some rest but you get a bolllocking from those around you 'why arent you looking after yourself properly?'. There is no reason, my answer 'I'm busy'.
If you ever feel like your sugar is dropping and you need a quick hit a pack of sweets, fruit pastilles are my favourite and 1L of Lucozade, it always works. Do not use chocolate, the fats will not breakdown you want the sugar. But I will go into more detail when I post MCAD and food. We are at war!
The extreme with regards to tiredness is what I have mentioned but there are other warning signs that you may not notice and those around you will.
When my sugar is low and my body needs rest I become very irritable... and that is the 'pre watershed' version. I am basically a nightmare and sometimes wonder how I have managed not to push everyone away. There is a lot to be said for people who love you and people with patience.Sometimes I will lose focus on the task in hand and become easily distracted, think 3yr old. Or sometimes I will just simply stare, resembling that of someone who is daydreaming. The difference being there are not thoughts at all running through my mind.
It takes many years to notice the signs and as I said previously, they will manifest themselves differently in each individual. the only thing you can do is make a note, literally or mentally to recognise them. By doing this the people are around you and most importantly YOU will know that something is not right.
So. Rest my fellow MCAD..ers. We need it more than most.
MCAD makes you tired. The inability to create ones own energy is a constant reminder that I am different.
10 hours sleep last night and I could probably have done with another 2hrs but the dog is not going to walk herself!
Coping with tiredness is much the same as any other person just multiply the need by 4! Whilst I was studying for my A-levels and then for my Degree afternoon naps were a life saver. Doctors recommend eating every 4 hours but I have a demanding job and a home to run. I am terrible at putting my own needs first.
However word of warning, do not push it. I do and its not a good idea. Your reserves fail, your limbs become like spaghetti and you slur your words (like a drunk).....shut down! Well this is how it manifests itself in me everyone has different warning signs. Not only do you need a massive glucose hit and some rest but you get a bolllocking from those around you 'why arent you looking after yourself properly?'. There is no reason, my answer 'I'm busy'.
If you ever feel like your sugar is dropping and you need a quick hit a pack of sweets, fruit pastilles are my favourite and 1L of Lucozade, it always works. Do not use chocolate, the fats will not breakdown you want the sugar. But I will go into more detail when I post MCAD and food. We are at war!
The extreme with regards to tiredness is what I have mentioned but there are other warning signs that you may not notice and those around you will.
When my sugar is low and my body needs rest I become very irritable... and that is the 'pre watershed' version. I am basically a nightmare and sometimes wonder how I have managed not to push everyone away. There is a lot to be said for people who love you and people with patience.Sometimes I will lose focus on the task in hand and become easily distracted, think 3yr old. Or sometimes I will just simply stare, resembling that of someone who is daydreaming. The difference being there are not thoughts at all running through my mind.
It takes many years to notice the signs and as I said previously, they will manifest themselves differently in each individual. the only thing you can do is make a note, literally or mentally to recognise them. By doing this the people are around you and most importantly YOU will know that something is not right.
So. Rest my fellow MCAD..ers. We need it more than most.
Saturday 22 June 2013
I decided to start my own blog about living with MCAD. There is very little available to people such as myself as the condition is still not universally recognised. All the information available is aimed at parents with babies or toddlers with MCAD....hello??? What about the rest of us??? It maybe rare but do not forget about those of us who have survived to adulthood! This maybe a good place for a concerned parent too.
So I guess some background would be the best place to start....
I was born with MCAD, diagnosed at about 2 years old. I am now 27 about to turn 28. My parents were in the British Army and we were stationed in Germany when I first fell ill. After travelling back and forth to different hospitals I was finally diagnosed at Great Ormond Street by a young German doctor.....We all laugh about it now!
Before reaching a diagnoses, my case was written off and a Priest bought in. Well, my mother maybe a passive person but you never provoke a lioness when her cubs are involved!!!! She fought for my life...Mum, I never say Thank you enough.
After a diagnoses was confirmed my parents were told that my life expectancy limited and that i would not survive infancy. Anyone who knows me will say I am stubborn and aim high. I am now 27 and planning my wedding. That's fingers up to all you who had predetermined my fate.
Growing up with MCAD can make you feel very alone. Regardless of having my own Consultant and Dietitian, being registered with Medic Alert, every time I have been at crisis these people have been 'unavailable'. I was once asked to trial a drug which side effects included 'a fish like odour' delightful!
Having to deal with things on my own and with the continued support of my mum and fiancee I continue to live as healthy a life as i could have hoped for.
I will join the age of technology and blog about how I deal with my condition day to day, when ill, etc. Hopefully this may helpa few others out there. I would also gladly give help to anyone needing it.
So I guess some background would be the best place to start....
I was born with MCAD, diagnosed at about 2 years old. I am now 27 about to turn 28. My parents were in the British Army and we were stationed in Germany when I first fell ill. After travelling back and forth to different hospitals I was finally diagnosed at Great Ormond Street by a young German doctor.....We all laugh about it now!
Before reaching a diagnoses, my case was written off and a Priest bought in. Well, my mother maybe a passive person but you never provoke a lioness when her cubs are involved!!!! She fought for my life...Mum, I never say Thank you enough.
After a diagnoses was confirmed my parents were told that my life expectancy limited and that i would not survive infancy. Anyone who knows me will say I am stubborn and aim high. I am now 27 and planning my wedding. That's fingers up to all you who had predetermined my fate.
Growing up with MCAD can make you feel very alone. Regardless of having my own Consultant and Dietitian, being registered with Medic Alert, every time I have been at crisis these people have been 'unavailable'. I was once asked to trial a drug which side effects included 'a fish like odour' delightful!
Having to deal with things on my own and with the continued support of my mum and fiancee I continue to live as healthy a life as i could have hoped for.
I will join the age of technology and blog about how I deal with my condition day to day, when ill, etc. Hopefully this may helpa few others out there. I would also gladly give help to anyone needing it.
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