Wednesday, 18 February 2015

Living With A Food Allergy

Living with a food allergy  

The advice here is primarily written for parents of a child with a food allergy. However, most of it is also relevant if you are an adult with a food allergy.

Your child’s diet

There is no cure for food allergies, although many children will grow out of certain ones, such as allergies to milk and eggs. The most effective way you can prevent symptoms is to remove the offending food (known as an allergen) from their diet.

However, it's important to check with your GP or the doctor in charge of your child’s care first before eliminating certain foods.

Removing eggs or peanuts from a child's diet is not going to have much of an impact on their nutrition. Both types of these are a good source of protein, but can be replaced by other alternative sources.

A milk allergy can have more of an impact as milk is a good source of calcium, but there are many other ways you can include calcium in your child’s diet, including green leafy vegetables. 

Many foods and drinks are fortified with extra calcium.

If you are concerned that your child’s allergy is affecting their growth and development, see your GP.

labels

It's very important to check the label of any pre-packed food or drinks your child has, in case it contains ingredients they are allergic to.

Under EU law, any pre-packed food or drink sold in the UK must clearly state on the label if it contains the following ingredients:

  • celery 
  • cereals that contain gluten (including wheat, rye, barley and oats) 
  • crustaceans (including prawns, crabs and lobsters) 
  • eggs 
  • fish 
  • lupin (lupins are common garden plants, and the seeds from some varieties are sometimes used to make flour) 
  • milk 
  • molluscs (including mussels and oysters) 
  • mustard 
  • tree nuts – such as almonds, hazelnuts, walnuts, brazil nuts, cashews, pecans, pistachios and macadamia nuts 
  • peanuts 
  • sesame seeds 
  • soybeans 
  • sulphur dioxide and sulphites (preservatives that are used in some foods and drinks) at levels above 10mg per kg or per litre 

Some food manufacturers also choose to put allergy advice warning labels (for example, "contains nuts") on their pre-packed foods if they contain an ingredient that is known to commonly cause an allergic reaction, such as peanuts, eggs or milk. 

However, these are not compulsory. If there is no allergy advice box or "contains" statement on a product, it could still have any of the 14 specified allergens in it.

Look out for "may contain" labels, such as "may contain traces of peanut". Manufacturers sometimes put this label on their products to warn consumers that they may have become contaminated with another food product when being made.

food products contain allergy-causing food:

  • Some soaps and shampoos contain soy, egg and tree nut oil. 
  • Some pet foods contain milk and peanuts. 
  • Some glues and adhesive labels used on envelopes and stamps contain traces of wheat. 

Again, read the labels of any non-food products that your child may come into close physical contact with.

Unpackaged food

Currently, unpackaged food doesn't need to be labelled in the same way as packaged food. This can make it more difficult to know what ingredients are in a particular dish.

Examples of unpackaged food include food sold from:

  • bakeries (including in-store bakeries in supermarkets) 
  • delis 
  • salad bars 
  • "ready-to-eat" sandwich shops 
  • takeaways 
  • restaurants 

If you or your child have a severe food allergy, you need to be careful when you eat out.

The following advice should help:

  • Let the staff know. When booking a table at a restaurant, make sure the staff know about your child’s allergy. Ask for a firm guarantee that the food you or your child is allergic to won't be in any of the dishes served. The Food Standards Agency (FSA) offers chef cards that provide information about your child’s food allergy, which you can give to restaurant staff. As well as informing the chef and kitchen staff involved in cooking your food, let waiters and waitresses know so they understand the importance of avoiding cross-contamination when serving you. 
  • Read the menu carefully and check for "hidden ingredients". Some food types contain other foods that can trigger allergies, which restaurant staff may have overlooked. Some desserts contain nuts (such as a cheesecake base) and some sauces contain wheat and peanuts. 
  • Prepare for the worst. It's a good idea to prepare for any eventuality. Always take your child’s anti-allergy medication with you when eating out, particularly if they have been given an auto-injector of adrenalin (read more about treating food allergies with a auto-injector). 
  • In older children, you can use what is known as a "taste-test". Before your child begins to eat, ask them to take a tiny portion of the food and rub it against their lips to see if they experience a tingling or burning sensation. If they do, it suggests that the food will cause them to have an allergic reaction. However, the "taste-test" doesn't work for all foods, so it shouldn't be used as a substitute for the above advice.

Can allergies be prevented

There is currently no evidence-based advice for prevention of food allergies.

It used to be believed that avoiding eating peanuts during pregnancy and when breastfeeding could help reduce the risk but this theory has now been questioned. 

It's important to follow the standard recommendations for pregnancy and breastfeeding, whether or not you have a family history of food allergies.

Tips for food allergen avoidance at home

Utensils, cookware, glassware, storage containers, and other food preparation equipment

  • Thoroughly clean before preparing or serving safe meals.
  • Prepare safe meal first to avoid inadvertent cross-contact
  • Be aware of the potential for cross-contact with utensils. For example, a knife used to prepare peanut butter and jam by a non-allergic child could introduce peanut into an otherwise safe jar of jam and subsequently cause a reaction in a peanut-allergic sibling eating the jam.
  • Designate specific containers for use by the allergic person only. For example, avoid sippy-cup mix-ups by using a specific cup for the allergic child or using an obvious label

Refrigerator/freezer and kitchen larder

  • Keep food containers covered/sealed to prevent spill contamination
  • Assign a specific shelf or cabinet for safe foods. Consider using colour codes or tags for easy identification

Good practices for the family

  • Wash hands before and after meals but particularly before serving allergen-free meals and after ingestion of allergens
  • Confine food consumption to specified dining areas or create allergen-free zones within the home
  • Wipe down surfaces after preparation and ingestion of meals. Cleaning surfaces with standard cleaners has been shown to be sufficient for removal of allergens such as peanut.
  • For young children, unsafe foods should be kept out of reach both at the dinner table and when storing foods

Tips for eating out

Before (prepare)

  • Check the menu (is it online?) to determine if there are suitable meal options
  • Call ahead to assess the restaurant’s ability and willingness to accommodate your needs
  • Consider carrying a print out of our help sheets with information about allergens and warnings about cross-contact
  • Take your emergency medications, especially any adrenaline auto-injector pens you have been prescribed

During (communicate)

  • Communicate clearly and directly about food allergy. It is best to speak directly to the person making the food, but don’t forget to speak to other staff including the waiter and/or manager.
  • Ask about ingredients and method of preparation. Do not trust ingredient lists on menus at face value

AVOID high-risk places for cross-contamination, such as:

  • Buffets
  • Ice cream parlors
  • Bakeries
  • Chinese and Asian restaurants (for peanut and tree nut allergies)
  • Seafood restaurants (for fish and shellfish allergies)
  • Deep fried foods, where the oil is reused for different foods and may therefore be contaminated by previously cooked foods
  • Potlucks and parties where homemade dishes come from a variety of sources


Tuesday, 3 February 2015

Huntington's Disease

Living with Huntington's disease 

Help is available to assist people with Huntington's disease in their day-to-day living. This might include physiotherapy, occupational therapy and speech therapy.

Huntington's disease puts a great deal of strain on relationships, and is very stressful and upsetting for the family. It's distressing to see a family member's state of mind deteriorate so much that they may not be like their former self at all.

Daily routines such as getting dressed and eating meals can be frustrating and exhausting. The types of help outlined below aim to ease the strain of the condition by improving skills that may deteriorate.

Help with communication

Speech and language therapy can improve communication skills, memory and teach alternative ways of communicating. It can also help with swallowing problems.

Communication aidscan sometimes be helpful, as they allow communication without the need for talking. For example, you can point to symbols on a chart to indicate your mood or whether you're hungry. 

The family of someone with Huntington's disease will need to be patient and supportive. They can try alternative ways of communicating if speech is a problem.

Help with mealtimes

People with Huntington's disease need to have a high-calorie diet. A dietitian can help you work out an appropriate diet plan. 

To help with eating and drinking, food should be easy to chew, swallow and digest. It can be cut into small pieces or puréed to prevent choking. Feeding equipment is also available, such as special straws and non-slip mats. 

At some point, it may be necessary to use a feeding tube that goes directly into the stomach. If a person with Huntington's disease doesn't want to be artificially fed during the later stages of the condition, they should make their wishes known to their family and doctor. They may want to consider making an advance decision (a living will) or a statement of wishes and preferences.

The Huntington's Disease Association has more information about eating and swallowing (PDF, 320kb). You can also email the Royal Hospital for Neuro-disability for further information and advice about swallowing difficulties and artificial nutrition. Their telephone number is 020 8780 4500, or you can email them on info@rhn.org.uk.

Occupational therapy

An occupational therapist (OT) can help with day-to-day activities. Your home can be adapted by social services to make life easier for a person with Huntington's disease, as they may be at risk of injury from a fall or accidentally starting a fire. 

Your shower, bath, chairs and bed may need to be adapted. You may also need to think about wheelchair access. 

Physiotherapy

A physiotherapist can help with mobility and balance by using a range of treatments, including manipulation, massage, exercise, electrotherapy and hydrotherapy. You may be referred to a physiotherapist through your GP or social services.

Electronic assistive technology

The Royal Hospital for Neuro-disability provides an electronic assistive technology (EAT) service. It's made up of a team of healthcare professionals who provide EAT equipment for patients and residents within the hospital, as well as for people with disabilities living in the community or at other hospitals or units.

Equipment includes:

  • communication aids 
  • computers and software 
  • switches and other access devices 
  • powered wheelchair controls 
  • environmental controls

Huntington's disease

The Huntington's Disease Association has a number of useful facts heels that provide advice about a range of topics, including:

  • behavioural problems 
  • communication skills 
  • sexual problems 
  • diet, eating and swallowing 
  • driving (see below) 
  • seating, equipment and adaptations 
  • information for teenagers  

The charity can also help you explore the housing options available when full-time care is needed.

It's also worth finding out what benefits you may be entitled to if you have Huntington’s disease, or if you're looking after someone with it.

You can do this through the Huntington's Disease Association or by contacting the CAB.


Driving

A person diagnosed with Huntington's disease who's started to experience clinical features should inform the DVLA because it will affect their ability to drive. 

The DVLA will write to your doctor, with your permission, to ask for their opinion about your condition. Based on that information, a decision will be made about whether you can still drive and for how long before another assessment is needed.

There's no need to tell the DVLA if you're carrying the faulty gene but haven't yet developed the features of the condition.

perspective

"I'm not as whole as I was. My thought processes have slowed down and it takes enormous self-discipline to do ordinary things like getting dressed – it's exhausting.

"I recognised these changes in myself years before anyone else did, and it's important that other people (including healthcare professionals) just accept this. The changes don't have to be measurable.

"They can't reassure me that all is well, but they can support me. By accepting that changes are happening, they give me permission to adapt my life at an early stage. 

"I have changed my high-powered job to an 'ordinary' job, for example, which has taken pressure off me and allowed me to put energy into other things. 

The end stage of Huntington's disease will happen no matter what, but I will live most of my life before this point and I want to make the most of it."

Sue Walters, Hertfordshire