Every couple of months I go to my gp’s clinic where I have a blood test which is sent to a laboratory where it is tested to see the levels of phenylalanine in my blood. This makes it harder to cheat and have things I’m not allowed as it will show up here. Twice a year I see my doctor and my dietician together. We discuss things like my general health and whether I have any problems. My height, weight, and blood pressure are also measured and we discuss my progress. I really enjoy these meetings as they make me feel like I’m in charge of my own diet instead of my mum doing everything for me.

PKU doesn’t stop me doing things I like, I have been on several holidays, both with my family, and with my school. I take my own food and have no difficulty finding something I can eat and enjoy. Most places where I have stayed have been very helpful when I explain my problem.

I used to get picked on by other children for my condition and had to sit by the teachers at lunch so they could keep an eye on what I was having, this made the other kids think I was a teachers pet who wanted to sit with the teachers all the time. AS IF!!! Also when I was younger, there was a time when I wasn’t invited to a friends birthday party. This was because her mum didn’t fully understand my condition and didn’t want to invite me and end up giving me the wrong thing. Eventually my mother went into school and gave a talk on my condition and its effects where the other parents were invited to come along and listen. Since then I’ve actually made more friends because they know I’m not a teachers pet and just want to be treated like everyone else. When a new girl started at our school who is diabetic, I was the first to make friends with her.

One thing I must always look out for is changes in products, especially drinks. This is because manufacturers are always changing the ingredients, adding some or taking them away. This means they can end up on what I call the “red list”.

I do meet other children with PKU. There are special events organized by the NSPKU where can all get together and just have a good time. I find it exciting meeting others with my problems. It makes me feel like there is so much out there I can do, especially when I meet adults with PKU who have families and jobs and don’t let this one thing hold them back, especially as I will have this condition for ever.

PKU has not stopped me having a normal life. Although at times it is a bit inconvenient, I can still enjoy normal activities and my food, within the limitations of my diet.

We are Michelle and Steve we have three children, All of them have Eosinophilic Entocolitis (EC,EG,ED)and our middle son also has eosinophilic oesophagutis (EE)accompanied by
Multiple food allergies and multiple drug allergies.

Our eldest also has a reflux of the bowel which means when he eats he needs to go to the toilet straight away, he also has lymphonodular hyperplasia and an autoimmune disorder.
We have one child that has a G-Peg and his main staple is EO28 Extra, our eldest son is also on EO28 via a NG tube he was drinking it but can not manage enough to keep his weight up.

Dealing with this disorder is a 24/7 job as you have to constantly check labels when shopping to see if allergens have been added, we have to deal with sickness and diahorrea on a daily basis as well as tummy pains, dizziness and Joint pains. The children have to take 14 different medications which adds up to a total of twenty plus meds per day.

We attended Great Ormond Street Hospital on a regular basis and the children have to have biopsies and scopes to check the levels of eosinophils and the level of inflammation in their throat and colon etc.

When the children were first diagnosied we felt very isolated as we could not access any information on the condition
we eventually found some other parents and went to america with them to a APFED conferance it was at this conferance we realised that this was a life long illness with out a cure. One returning to the UK we decided to set up a website to help other parents.

Our eldest child has had a major flare up since december and can not tolerate any food at all as of this time. We have found that this is a waxing and waning condition and the children need to keep to a strict restricted diet and continue to take the medication whilst using the elemental feed.

please have a look at the website we have set up http://www.fabed.co.uk

Michelle and Steve

As a kid, I was eating mainly carbs and fats and lots of fruit, but very small amounts. I was a tearaway with ADHD so I was burning through energy like no tomorrow. As a result, I was a pretty lean kid and my dieticians expressed concern that while I was a tall child, I was pretty light.

As a result, I was put given Calogen supplements which I took in the form of a milkshake with a beautiful zero-protein fruit ice cream called Nectacream. While the Calogen suppliments had their desired effect (I went from a lean skinny lanky kid to a reasonably solid and well-padded youngster) the company that made Nectacream folded, and that was the end of that. It saddens me that Nectacream doesn’t exist today – I’m sure it would have made a killing as a PKU ice-cream if it had gotten the global exp

osure the internet may have been able to afford it. Rest in cold, creamy peace, my long-lost friend.

Anyway, I was around 73 kilos going into college and struggling with my diet. I was taking my Aminogran supplement less and less because the morning doses made my breath smell horrible and I quickly spun out of the habit. In a bid to teach me some responsibility, my mother made me make it for myself. It backfired and I just stopped.

So I went off diet for a while – approximately five years. During that time I found college extremely difficult, and my life was somewhat turbulent. Needless to say, I made it through college and into university. My first year was typical – wild parties, lots of alcohol and lots of bar food – I developed a ‘healthy’ taste for garlic bread and fries, and spent many a sunny afternoon with my textbooks, beer and snack food. After a fun season during my final year of college, I went back to rugby and played in an Under 85 kilo weight grade. Due to my lifestyle and my regular dinner (pork crackling + mash potato + oven fries) I put on a lot of weight, and soon found myself weighing out of my games. After some problems with my then on-again off-again girlfriend and being forced to watch most of my team’s game from the sideline, I became pretty down. The fact I was not getting anywhere near what my body needed in terms of nutrition was no doubt a contributing factor.

Things culminated when a series of high blood test levels and my regular appointment at our national metabolic clinic saw me faced with the very real possibility that I was doing myself serious damage, and my B12 levels were a cause for concern. I knew I had to take my Amingran more seriously, but I could not get myself into the habit of making it. Thankfully, I was introduced to Easiphen, which our national pharmalogical body was contemplating funding.

In the four years that have followed, I have gone from being disorganised, irresponsible, clueless, incapable and dangerously incompetent with my diet to having a really good handle on it. My extra weight, which was putting me at risk of a series of other problems such as high cholesterol and diabetes is now firmly under control. I have regained a svelter figure through an aggressive low-cal diet with rigid Easiphen intake and have re-registered for the Under 85 team I had to effectively walk away from in 2005. I’ve gone from 103 kilos to around 81kgs, and there’s more to come off. I’m also trying to build some muscle mass, although the low protein diet is proving to be a bit of a stumbling block in this regard. If anyone knows of any good suppliments for this purpose, please message me! I love to cook and while I am getting very good at making breads and pizzas, I also enjoy some treats like popcorn in grapeseed oil (absolutely beautiful!).

I’m proud to have PKU. It’s no longer a stumbling bloc, it’s something that I know know a lot about and have read many things on. Understanding my condition has helped me take care of myself and given me something to be proud of.

I’m sorry for how long this is, but there is a silver lining to going back on the diet. If you’re on it now as a teen, for the love of all things awesome, stay on it! Learn to cook for yourself using things like LoProfin and discover the small wonderful things about your condition that other people don’t get to experience. Most other people will rarely smell bread fresh out of an oven – PKU lets you do that all the time! You can also make scones, pizzas and all sorts of wonderful goodies with relative impunity! I love the taste of my baking, I look forward to mucking around with recipes and it’s pretty much the most rewarding skill I’ve ever learned. And there’s nothing wrong with learning to cook – I’m a 22 year old rugby-playing New Zealand university student, and I consider myself to be every bit as rugged and articulate as the next Tom, Dick and Harry.

While I was lucky to have a seemingly mild case of PKU and to not have done too much damage during my more care-free years, I can assure you that life with PKU is far more enlightening and interesting – and ultimately more rewarding – if you have tale the time to understand the science behind your condition, how it works, what you can eat and how it can affect how you live your life.

Best Wishes

Dan

Gathering the group together in one place not only gave us a chance to demonstrate some great ideas on cooking for a low protein diet, but also gave the HCPs a chance to interact with each other, work together and share their thoughts in a relaxed, fun environment.

Mona Taylor, a professional home economist who has a lot of experience in this specialised area led the day along with Julia Chalkley, a professional chef. This wasn’t just a ‘watch and learn’ day. After each recipe demonstration, the attendees were sent away to their own workstations to ‘give it a go’ themselves. As the aim of this day was for the HCPs to take these tips back to their own clinics, it was vital for them to be comfortable with doing these recipes with their patients without the support of our cooking experts.

The day concentrated on simple recipe ideas such as preparing pasta, but also gave great tips and advice on baking breads and tartlets. As baking can be quite a tricky process at the best of times, Mona and Julia showed the group just how easy it is to use Loprofin baking products and the great results they can achieve with them.

The feedback from the day was very positive, not only was fun had by all, but the ideas taken away from the day will be of great benefit to all those people who follow a restricted diet. As anyone following a restricted diet knows, adherence can be a major issue due to a lack of choice on the diet. Our aim is to show people on the diet that these restrictions need not be the obstacle they appear, and thus improve their chances of sticking to it.

There were times when they would use it as a hold over me, particularly when we were fighting. They would chant “we can eat chocolate but Julie can’t…”. I can still picture them doing it. I would get angry, although I don’t think it was because I couldn’t eat chocolate, it was more because they were picking on me. I have to admit I did try chocolate at an early age but I never liked the taste. They were good to me overall and they always looked out for me, some times too much.

Eating out was fun, we would get some funny looks from people as we brought out the scales to weigh the fries and other stuff. Overall this was rare: we did have a game to come up with the best reason for doing it. Once we convinced this old couple that I was a space cadet from NASA getting ready for my first flight!!

As time went on I did start to rebel, this was mainly in my late teen years. I got a real liking for McDonalds! I think I did suffer though… my grades went down and I put on weight.

Now that I am older I am back on my special diet: I would like to start a family in the near future and its real important for the pregnancy phase.

Well that ends my little blog, I hope it was of some interest to you. Just remember, even though you have PKU you can still live your life.

Below is just a little bit of advice. If you are planning a big trip, speak to your local doctor first.

The first thing you should do, whether you are traveling abroad or close to home, is locate a doctor in the area you will be visiting. There are several organizations available to help in your search or you can simply ask your doctor for referrals or best yet, good old Google!

If you are taking prescription medication, you should be sure to take plenty for the duration of your trip. You should also keep it with you when you travel on the plane to avoid it being lost like luggage can be. Always keep your medication in its original container and carry a typed statement from your doctor regarding what medications you are taking and what they are for. You will also need to get copies of all of your prescriptions, including foreign names, in case you have to refill them abroad. However, you should avoid this by carrying enough medication with you, as filling prescriptions in other counties can sometimes be difficult.

A common ailment among travelers to less developed countries is known as “traveller’s diarrhea”. This can be especially dangerous for sufferers of Crohn’s Disease and special care should be taken to avoid it from occurring. Basically, traveller’s diarrhea occurs from the ingestion of water or food that is not as stringently processed as in more developed countries. Steps that should be taken include being very careful about what you eat or drink; do not drink water unless you boil it; avoid drinks made from tap water, like tea or juices that may have been mixed from concentrate; use bottled water to drink and to brush your teeth with; avoid ice, ice cream, and uncooked fruits, vegetables, and meat; avoid diary products as they may not be pasteurized; and do not eat any questionable food. If you become affected with traveller’s diarrhea, take an over the counter medication and be sure to intake plenty of fluids to avoid dehydration.

Also watch for signs of a medical emergency, such as high fever or chills, which may be a sign of infection; profuse rectal bleeding; extreme abdominal pain; dizziness; or dehydration. If any of these occur, seek medical attention immediately.

Following these basic rules will help you enjoy your travelling more as a lot of the stress and worry associated with travelling with a condition such as crohn’s will be taken out of your trip.

Happy travelling!!

The fact that there was a meeting at all was down to the hard work of Barbara Cochrane from NHS Greater Glasgow and Clyde and the Clinical Network who organised a great day for all those who attended.

As well as work shops for children of all ages, there were also discussion groups for the older people attending where they were given the chance to talk about any and all the issues that affect them. The morning workshops for the younger children were designed to give their parents and carers a chance to attend these discussion groups. To do this the children were kept well occupied!! Mona Taylor, a professional home economist who specialises in cooking for a restricted diet, had the children decorating food for the upcoming Christmas holidays.

The afternoon saw the older children and teenagers go off to do some outdoor activities, and the younger children were treated to a special visit from ‘The Animal Man’ and his collection of cuddly critters!! This again freed up their parents to come and discuss more issues that they face, primarily diet adherence. Mona had prepared lots of different low-protein recipes for the parents and carers to come and finish off. This was to give them new ideas for recipes especially with Christmas around the corner and another opportunity for them to mix in an informal setting.

The overwhelming consensus amongst those who attended was that this event was definitely a success. The real value of meetings such as these is the chance to come and meet people in the same situation, especially for the children affected. Confidence and friendships can be built at events like this and this is why we hope this meeting will be taking place again next year.

Food intolerance is a reproducible adverse reaction to the ingestion of food or to any of it’s components ie proteins, carbohydrates, fats and additives. Such adverse reactions include metabolic reactions, enzyme deficiencies (sorry if this sounds very technical, but I’m trying to clear up the confusion)

As a group, children affected tend to have symptoms of severe colic, gastroesophageal reflux and esophagitis (inflammation of the esophagus due to irritation by stomach acids from repeated episodes of reflux), or atopic dermatitis (eczema). As many as 30% of infants may suffer from these symptoms, but it is not yet clear how many of them may be suffering from this syndrome

In more than 50% of children with food allergy, adverse reactions to more than one food are seen. Children with allergy to several common food proteins like cow’s milk, egg and peanut are termed as having “oligo” food allergy.

Multiple food protein intolerant (MFPI) infants are distinguished from “oligo” food allergic patients due to their intolerance of soy and extensively hydrolysed formula, in addition to a range of other food proteins. Infants with MFPI often come from families with an atopic (allergic) history. MFPI is also recognised to occur in breast-fed infants. Most infants with MFPI tolerate low-allergen foods such as grain, vegetables, fruits, and meats in the second year of life.

A better prognosis is associated with an earlier diagnosis, predominant digestive symptoms and the absence of associated allergy to other foods. Therefore in infants with late diagnosed MFPI, dietary exclusions are often required up to 3 years of age.

Infants with multiple food protein intolerance are often allergic to soy, extensively hydrolysed formulae (eHF) and a wide range of other foods. They have complex nutritional problems and should be distinguished from those with sensitivity to common food proteins such as cow’s milk, egg and peanut but who tolerate eHF and soy. Infants with intolerance to extensively hydrolysed formulae and soy can be safely and effectively treated with amino acid-based formulae.

John first fell ill at 19, but he just attributed it to the excesses of his life as a university student. Six months of acute stomach cramps later, he had lost almost two stone and was suffering extreme fatigue.

When the problem first arose, John recalls, ‘I was experiencing terrible stomach cramps, not unlike food poisoning, and on a bad day going to the toilet up to ten times.

‘When I started university I was 12st,’ he says. ‘But by my second year I weighed around 10st, and looked pretty skinny at 5ft 8in. I was pale, tired all the time and had dark circles under my eyes.’

Finally John was diagnosed with Crohn’s disease after a colonoscopy and blood tests. Crohn’s is a condition where the body’s immune system attacks the digestive tract, causing damage and inflammation. The illness most commonly begins between the ages of 15 and 25.

People diagnosed with the debilitating gut condition often have to look forward to a lifetime of medication and even surgery, with an increased risk of cancer.

The first line of defence for most adult sufferers is usually powerful antibiotics to battle infection, drugs which reduce inflammation, and immune-suppressant medication

These are drugs which carry a host of side effects such as weight gain, mood disorders, serious infections and an increased risk of cancer of the lymph glands.

However, eight years after his diagnosis, John, who is one of 60,000 Crohn’s sufferers in the UK, is free of symptoms – and this is despite never having had a single drug treatment.

John leads a very active life which has seen him run the New York Marathon and regularly play club rugby. This breakthrough has been achieved thanks to a simple diet.

This is thanks to gastroenterologist Professor John Hunter and his team at Addenbrooke’s Hospital who identify foods that act as a ‘trigger’ for symptoms, eliminate them from a patient’s diet and ’switch off’ the disease.

90 per cent of Professor Hunter’s patients are symptom-free and 56 per cent can resume a normal diet after five years.

To read this article in full, please click here

in 2001 my mum passed away, my great support towards the end of 2007, i was getting angry till one day i grew so angry that i could not control it at all. It reminded me of the days when my count was to high and it was a wake up call. so i found a PKU clinic in Perth western Australia saw the the doc and he said i was back on the diet for life and this blog is of me learning and training my self back on to the diet.