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!!

My partner has PKU and is showed my a few of the blogs on this site and, knowing I’m a bit of serial blogger, ask me to do something for this site so I’ve written a blog about living with someone with PKU as I’ve read a few by people with PKU and want to put across the other side of it.

As you may have guessed, I am non PKU, in fact had no idea of what PKU was until I met Jill. I met Jill on a night out, and it was about a week or two before PKU was a topic of conversation. I remember Jill came round one day for a BBQ and to meet the parents (there wasn’t any Ben Stiller style comic shenanigans…unfortunately). After the initial meet ‘n’ greet, we moved through to the garden where the Lord of the BBQ (my dad) got to work. The chat was moving along until the inevitable question came, “What would you like Jill? Hamburger? Sausage? Chicken? Ribs?”  Jill replied and started to explain about phenylketonuria and that she would not be able to have any of the food my dad had lovingly prepared. My mum, ever the parent stepped in and offered a breadroll to make a chip butty only to be told that the bread had protein in too so she’d just stick to a jacket potato and salad. I think my dad thought she was on one of these new age diets and even said “you need some meat on your bones” slightly missing the point (bless!)

I remember thinking, “what can you eat?” and being completely puzzled by the fact that in the 25 years of my life I had never heard of this fenny-kettle-yourear thingy. I spent hours that night looking on the internet but the first problem I discovered was that I did not know how to spell it!! Google is a great tool when you know what you’re looking for, less so when you don’t! Typical! The next time I saw Jill I told her about my attempt to find out more information and my (frankly, schoolboy) spelling, which she found highly entertaining. Jill said it is often just abbreviated to PKU, which I was fairly confident I could spell!!

Back to the internet, PKU spelt correctly. Once I’d realized that it didn’t stand for PeKing University, I found quite a lot of information about this mystery condition (or at least a mystery to me!)The first time I cooked with PKU foods, I thought I would be a mans man and make a manly batch of….fairy cakes, as Jill could not go to the shops and just buy them like I do (not all the time, but they are a nice treat!) Jill’s mum gave me the prescription ingredients, (Low protein flour, egg replacer) and lent me some low protein cookery books. Making the mixture I felt quite confident, thinking “this is not too bad”, “looks like normal cake mixture” and I had a taste out of curiosity! It tasted like normal cake mixture! I put the mixture into little fairy cases and put them into the oven for 15 mins. After 15 mins they looked really pale so not knowing much about what they should look like, I put them back into the oven to brown. I removed them from the oven not long after, and they had turned brown, but were as solid as rocks! I had completely burnt them! I cut the top off of them and inside did not seem too bad as they looked spongy but slightly lighter in colour to what I was use to. I was so determined to make them so I had another go. This time I removed them from the oven when they were still pale but they were firm to touch. This attempt was much better, they tasted not dissimilar to the cakes I normally have. The moment of truth was when Jill tasted one, she was very impressed and ate the lot! Gordon Ramsey watch out! She was only off work sick for a week too (only joking!)

Three years on our relationship was going strong and we decided to purchase a house, so after traipsing through many properties we managed to purchase one. This was a voyage of discovery in many ways as it would be the first time we had lived together and it would be our first attempt of cooking meals together. This was the first time I really worried about Jill and PKU as I had no idea on cooking main meals for myself let alone a PKU diet. PKU cakes and biscuits were fine but a main meal? What would I cook? I did not understand the exchange system or how to calculate protein in food: it was a minefield! Jill was really reassuring and taught me lots though

The best thing though is that Jill is actually quite a talented chef herself, not to my levels you must understand, my beans on toast have a Michelin star, but she’s more than happy to cook up a meal when she gets home as it’s usually a good two hours before me. She’ll do 2 versions, one for herself and protein-i-fied one for me. Usually this means doing a veggie sauce and frying a bit of chicken for me to add to it. I ain’t complaining. Beggars can’t be choosers

I expect my experience will be familiar to some of you and for people that have just become familiar with PKU it will become a second nature to check ingredients. Some of my ex-girlfriends used to count the calories on packaging this one just counts the protein!

The event was filled to capacity with a range of Health Care Professionals attending including, Dietitians, Clinical Nurse Specialists, a Consultant Neurologist and Diet Chefs. Mr. Kevin Rafferty, a dietitian from Nutricia Liverpool presented on “Nutritional therapy as a standard part of epilepsy care”.

 
Ms. Caitriona Hensey, Senior Dietitian Crumlin, provided an informative overview on the points to consider when starting a patient on a ketogenic tube feed. Attendees were also introduced to the new ketocalculator available to healthcare professionals for designing new recipes and using current recipes depending on the ketogenic diet ratio (http://www.shs-nutrition.com/myketocal/). Everyone then got a chance to try out some of the new ketocal recipes including pizzas, tartlets, omelettes and smoothies. The main comment about these was that they tasted great and would provide great variety for patients on the ketogenic diet.

If you would like any further information on Ketocal please contact Nutricia on 0151 230 5242

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

It was very simple because I was born during the  Second World War. It is only a piece of paper typed by my father.

So, how did I end up with epilepsy? I am not really sure, but as a child I had once fallen of a small wall injuring my head: you can still feel the dent there.

At first, there were no problems, but then I started experiencing absences (or “petit mal” / loss of consciousness seizures). In the beginning I only had a few of these but later they became more frequent: finally I was experiencing 20 seizures an hour. Most people use bicycles in Holland, unfortunately I was not allowed to cycle anywhere anymore because I became a danger to myself and others in the street.  I had become a problem for my parents and I was only 8 years old. I ended up staying in hospital for 9 months until the doctors finally said that they could do nothing for me. At that stage my parents and I had to live with a disease knowing that there was no possibility for cure.

My parents tried alternative therapies, but these had no effect. Then they heard of an institution, Meer en Bosch in Heemstede (a village 30 kilometres west of Amsterdam). I was sent there and they gave me a diet of 2:1*. It was successful and I was sent home again. I went to a normal school and everything seemed to be solved.

There was only one problem: I was always hungry. We spoke to the specialist about this but he said everything was alright. I should have been getting enough calories to live and grow. He couldn’t understand why I was always hungry. I felt well though and was happy not to be losing  consciousness. However because I was always hungry I started eating sweets and other snacks including bread and fruit. This was the beginning of the end for me: my epilepsy started again. I was again experiencing 20 seizures an hour.

My parents sent me back to Meer en Bosch in Heemstede and they gave me the same diet again. This time however it did not work. So they changed the ratio of my diet to a 4:1* mix.  I was instructed to fast for two days first, living only on a little bit of water. After these two days I was given the diet and it had an immediate impact. The seizures went as quick as it came.

I was later told that the fasting played a big part in my recovery. I thought it was just the diet. Unfortunately I could not stand the diet and kept vomiting: this went on for many days. It was about a week before I could start eating again. Everybody was convinced that the diet had a positive affect on the epilepsy but I could not keep any food down.
 
In Heemstede 50 % of the boys in my house some form of high fat diet. They were either on a 1:1, 2:1 or 2.5:1*. The staff had little experience with the 4:1 diet. Finally a decision was made to allow my body to recover and become healthy and strong again. I enjoyed my time in Heemstede and I was allowed to eat anything but I was still experiencing the seizures.
 
After a few months they started me with the diet 1:1* and then a month later with 2:1* and again months later with 3:1* and at the end they gave me 4:1*.  The results were fantastic. I did not experience any seizures. My epilepsy had been cured and I was healthy again.  

So, what did my diet consist of?

For breakfast

1. About 70 grams of butter.
2. A small piece of bread: 2 x 4 centimetres.
3. A matzo of 30 x 30 cm
4. A 1/8 litre of cream
5. An Egg
6. Vitamins
7. May be there was more but I don’t remember.

I had to eat the butter with a lot of water.

For lunch I had meat and vegetables every day. The evening meal was the same as breakfast with one exception: Instead of the cream I was given 50 grams of peanuts.

The diet did have some side effects:

• I was small for my age.
• My curly hair went straight.
• I ended up with a lot of acne on my back.

                                             This a photo of me at that time.

Did it all end well? Not quite, I spent two and a half years at the institution and when the insurance company heard what the diet had done, they decided to stop paying for my stay at Heemstede. My parents were worried that I would become ill again if I returned home. But thanks to the government a solution was found: I was allowed to stay on because of a concern related to food poisoning.

During my stay at Heemstede I did not see my parents much. My father came every month but my mother only ever visited me once. I still had a good and busy time there. I did my schooling, here is a photo of my class:
 

I am the one in the middle with my arms around my knees. This photo was take during my heavy diet period and I still had curly hair. To keep busy I took part in many activities, I was in the scouts, I sang in a choir and I was an actor for a play given to our parents and the workers of the institution. The play was called: Jaap Holm and his friends, a play made from a Dutch book for boys. You can see me acting below:

This picture shows me standing on the right. My diet went from 4:1 to 3: 1 to 2:1 and my hair turned curly again. The other boys were also from the Institution in Heemstede.

I thank the Dutch government for changing the regulations: this allowed me to stay at Heemstede and ultimately cured my childhood epilepsy. The question which I am sure you are keen on finding out about is, what effect did it have on the rest of my life?
 
Well, after my stay at the institution Meer en Bosch in Heemstede I went to high school.  I was now getting a normal Dutch education like every other young man in Holland, all be it a bit late. I start at high school when I was 14 years old: all the other pupils of my class were 12 years old. It was a difficult start, but I succeeded and from high school and went on to university and got my diplomas to become a teacher and director of a basic school. I continued my studies after getting married and finished my university degree. I had a good position and I was working with success.

Then in about 1992 I was working in a very stressful situation and I experienced a `grand mal` attack whilst driving. I was prescribed Diophantine which cured the problem and after 5 years my neurologist decided to stop this medication. Unfortunately I experienced another attack so the decision was to continue this medication for the rest of my life.

During the last 15 years I have had about 5 attacks, two very heavy. I now hope that the epilepsy is under control again. 

Some time ago I wrote my second book called “Broken Head”, it had nothing to do with my epilepsy. It was later on that I really understood the underlying meaning. During my life time I have experienced a number of problems but I was always sure I would  be healthy again, or in my case I’d be able to function again. I now have spondylitis ankylopoetica and have to travel to a special spa in the Czech Republic. Here I can stop the pain without having to use any medication.

My final point is, I have always managed to I solved my problems and I believe that there is a solution for everyone out there for a healthy life.

The Netherlands, Houten, 13 October 2008

* This is the ration of Fat to Protein and Carbohydrate.

At this meeting we were lucky enough to meet Mr Brugt Warnar. Brugt followed the Ketogenic Diet from 1953-1957.

It all started for Brugt when he was 6 years old. After a childhood accident triggered a form of epilepsy in him, his parents took him to a doctor in Utrecht, Holland. The doctor informed his worried parents that he was “sorry” and “there was nothing we can do, your son will be like this for the rest of his life”. This was a devastating blow for Brugt’s parents but his mother did not give up hope. After much searching and researching, she discovered a centre just outside Amsterdam in the Haarlem district that specialized in paediatric epilepsy. Brugt was 9 years old when he entered the centre and was put on the Ketogenic Diet, which back then was called the “Fat Diet”.

The results were almost instantaneous, Brugt’s seizures went from nearly 20 an hour to virtually none! The biggest difference could be felt by Brugt himself as he said he could physically feel himself “getting better” and was no longer so emotional and aggressive. After 9 months of residential care at the centre, he left but continued on the diet for a further 3 years. At the age of 14 he came off the diet and hasn’t looked back since. He went on to university, got married and had two children.

As Brugt says himself, “It’s so important to find methods without medication, food gives you more control”

Follow the link to watch the video in full

The Ketogenic Diet - The 1950’s & Now

When Luke had his heal pricked I had no idea that the results would be so devastating (devastating at the time but in hindsight it could have been so much worse). My main message to all of you out there who find out that your child has PKU is, “DON’T WORRY”.  I wish I had someone to speak to at the time, I think it would have made life so much easier. I am not saying that the help we got from the visiting Midwife and Dietitian was no good: you just wanted to speak to someone who had been through it all.

I remember being very depressed and wondering how I would cope. Jeff was strong and he found out a lot about PKU at the various libraries he visited. We were then given a life line, an introduction to a family who had two children with PKU not very far from us. Cheryl was great she reassured me that there are few differences to bring up a child without PKU: her first child did not have the disease.

Gradually I got use to the whole idea myself, and I got into a routine of preparing the formulas: I even got use to the smell! Life continued and little Luke grew bigger and bigger. We got involved in with mother and toddler groups and formed a good relationship with a number of other PKU families: we couldn’t meet that often because we were al spread out. As far as I could see Luke was growing up to be a normal little boy. I on the other hand had to learn to be more organised.

Then not long after Luke’s second birthday I fell pregnant again. It wasn’t planned although Jeff and I always wanted more children. We were a bit apprehensive at first but having had the experience with Luke we knew it wouldn’t be the end of the world if number two was PKU too.

And so it was, Matthew was born on a cold December morning. He seemed healthy enough, but the screening was to show that he had PKU. Did we freak out this time, no we didn’t. In many ways I was much happier that Matthew had PKU because I knew meal times would be easier. Luke was as proud as punch that he now had a little brother.

I thought they would be similar but they were very different in character. Matthew was more demanding, and it was nearly a year before he slept through the night. He seemed to be into everything: very mischievous but he always gave me a great big cheeky smile. He had to learn quickly to stand up for himself when his bigger brother decided that it was his turn to play with a given set of toys. After speaking to mothers whose children did not have PKU it was obvious that he was just like any other child: looking to develop his own character.

After 4 years of having a house full of boys I convinced Jeff that we should go for another, this time I wanted a girl. The question of PKU never even crossed our minds, and as luck would have it, I gave birth to a beautiful bonnie girl just over a year later.

In terms of children, we have had PKU, PKU, PKU. They have all grown healthy and they are doing well at school. They are even keen on sports. It has not been easy, but having spoken to many friends I can say that all the problems we have had are the ones experienced by any family. Remember giving birth to a child with PKU is not the end of the world: they will turn out to be just like any other.

The next big thing, and the most relevant to this blog, is that I have started the pre-conception diet. I had my clinic appointment on 1 October – just four days after landing back in the UK from our wedding and honeymoon. I spent the morning seeing doctors, having blood tests and learning about what the preconception diet involves, then spent the afternoon in the hospital’s metabolic kitchen sampling the latest new products. We decided not to actually start the preconception diet until after the weekend, so I could have time to be adequately prepared.

So, on Monday I started the preconception diet with a baseline blood level of around 1400 (well, the proper blood test said 1400, but the blood spot said 1300). After an initial chat with my doctors and dietician it was decided that I would start the diet on only 8 exchanges per day – a cut of 7 exchanges! This was the bit that worried me the most, because I’ve just spent a month travelling and not following the diet all that much (mostly due to lack of access to products etc).

Well, I’m glad to say that three days in I’m going strong and I feel quite happy about things! It’s no-where near as hard as I expected, which is rather nice, I must say! I spent part of my weekend cooking and freezing foods – I baked raspberry muffins, cooked a ratatouille and a sweet potato curry and baked some low protein bread – and I’ve decided that the key to being successful on such a restricted diet is preparation. I have to say, knowing that doing this properly means we will be able to try for a baby once my levels are below 300 is great motivation, too!

I will admit it’s hard work – for the first time in my life I have a food diary which I am using religiously, I’m carrying scales around with me for the first time since I was a little kid, and I’m weighing and counting every single little thing that goes into my mouth. But, to be honest, the food isn’t bad and I’m not going hungry. I was always convinced that I’d pretty much starve on the pre-conception diet, but there are some great products out there that make adhering to such a strict diet so much easier!

At the moment I’m still waiting on a lot of products to arrive, so hopefully I’ll be able to expand what I eat a bit more soon. On week one, day three, on the pre-conception diet, this is a typical day for me:

Breakfast: 1 weetabix with a carton of Sno Pro, five raspberries and five strawberries. One pouch of Lophlex LQ and a glass of juice.

Snack: Three Loprofin chocolate chip cookies

Lunch: 2 slices of PKU bread with free roasted vegetables and salad OR sweet potato curry with 2 exchanges of flour tortilla (about half of one), a can of Sainsbury’s diet cola and a pouch of Lophlex LQ

Snack: One packet of walkers crisps OR a raspberry muffin

Dinner: A selection of free vegetables with my remaining exchanges used up in potato and a pouch of lophlex LQ.

I also snack on free fruit throughout the day if I get hungry.

So really, it’s not too bad! I have to do my first blood test tomorrow morning, and for the first time in my life I’m actually excited about doing one! I can’t wait to see how much my level has dropped and the only thing that stopped me doing a test today is that I know that if I wait 24 hours I should get an even better result.

I’m not really feeling the benefits of being on such a restricted diet yet – then again, to be fair, we’re not sure if 8 exchanges is going to be right for me! I am feeling very tired and extremely emotional – a bit like a rollercoaster actually – but then again, I always feel like that for two days when I tighten up on my diet.

I will continue to document my experiences of the pre-conception diet and throughout pregnancy, so watch this space…