Family Fun Days

PCD Day, June 2007

The family fun day was held on Saturday, 9th June in Milton Keynes. 40 adults and 32 children were entertained and educated. The weather was glorious and other than a few technical hitches with the power supply the day went really well.

Fiona Copeland chaired the A.G.M. To summarise the group this year has:-

  • Maintained website
  • Continued to support families
  • Continued Medical Advisory Board - group of professionals meet twice a year to discuss PCD and its treatment
  • Newsletter went out to 250 families and 200 doctors and only 6 were returned, which indicates that the database is accurate
  • Provided a stand at the British Thoracic Society Winter Meeting
  • Fiona spoke at meetings with medical students at the University College Hospital and proceeds went to the PCD group
  • Worked more closely with 3 regional PCD testing centres, in London, Leicester and Southampton - these centres use the £3 million secured for testing, staffing and maintenance of equipment
  • Initiated use of www.justgiving.com which has been a great success
  • A grant of £1,000 has been given for PCD genetic research
  • Fiona continues to work with the Genetic Interest Group (GIG)
  • There have been major fund raising and awareness activities. Fiona did a 10k run with a team from the Brompton hospital and raised nearly £16,000, Mick Wilkin raised over £3,000, Sheona Hardie £1,000, Kallum Myhill over £1,000, Nigel Coleman over £500, Greg and team over £1,000 and Sarah Kirk nearly £900.

Major plans for 2007/2008 are to rebrand the group with a new logo, leaflets and marking material.

Our guest speaker in the morning was Sarah Payne, Paediatric Physiotherapist from Southampton General Hospital. Sarah began her talk by stressing the importance of doing physiotherapy every day. She compared doing physio to cleaning teeth, and pointed out that if neglected, teeth can be fixed but lungs can’t. Permanent damage can occur if physio is not done. Physio is to keep you well, and not to be done just when you are ill.

Sarah explained the importance of variety in physio techniques to avoid boredom and increase effectiveness. She recommended using a tipping bed or wedge. She described and demonstrated various adjuncts, which are devices for helping physio. They work by building back pressure that keep the airways open, and cause vibrations which liquefy secretions. Vibrations need to be low down to be effective. She said that all adjuncts work equally well, but we need to find the best one for each individual. Help is needed from a physiotherapist to ensure correct usage. There are a variety of adjunct devices including a pep (positive expiratory pressure), a pep mask, a flutter, an acapella with which the pressure can be regulated, and also a device that involves blowing bubbles which is suitable for children. With a pep mask, assessment is needed to see which hole size is required. Good techniques are really important if adjuncts are to be effective, eg do not blow the cheeks out, and use a nose peg to stop air leaking out.

Phsyio needs to be as active as possible, and she recommended doing the active cycle of breathing. She said that a plastic ketchup bottle is much easier to get ketchup out of than a glass one, and compared this to someone who is actively participating in physio and someone who is not. Sarah stressed the importance of regular physio reviews. Bad habits should be checked. Techniques may need to be changed as lifestyle etc changes. The patient should be taught to be independent with physio. Techniques should be checked for effectiveness. She explained that the effectiveness of physio could be assessed by the amount of sputum produced, the amount of coughing both day and night, the number of chest infections and how the person feels.Sarah also stressed the importance of exercise. Spine and rib mobility is reduced in people with chest problems.She recommended aerobic exercise, and strengthening the upper chest muscles (using monkey bars and wheelbarrows for children).She also stressed the importance of good posture.

She described the use of nebulisers and inhalers. She emphasised the importance of using them in the most effective way, and choosing the one that is the most effective and up to date for the individual. Broncho dilators are used before physio, and nebulised antibiotics are used after physio. Cleaning of equipment is very important. She recommended washing it in hot soapy water after use, and then air drying and storing in a Tupperware box so it doesn’t get dusty. Sterilising Fluid should be used once a week. Some plastic equipment can be put in the top of dishwasher in a washing powder bag.

After a great lunch we were treated to a talk by Lisanne Davidson a nutritionist about eating a healthy diet. Lisanne compared the body to a tree and spoke of synergy and the collective effect of all the body’s systems working together, in particular for PCD, the respiratory, immune, lymphatic and reproductive systems.

She explained that blood sugar balance has a big impact on the immune system, ie how much glucose is going into the blood stream. Stimulants like sugar, refined carbohydrates etc lead to highs and lows which in turn put stress on the body and bring the immune system down. This results in poor energy, more cravings, fewer nutrients and stress on the body. When the glucose level is too high the body produces insulin, and when it is too low the body produces glycogen. The key is to have an even pattern of glucose levels, which then boost the immune system. If one can get off the blood sugar roller coaster then we have more energy, focus etc.

AVOID SUGAR and SUGAR in:-

  • Fizzy drinks, chocolates, sweets, biscuits
  • Many processed foods, especially fat free
  • Honey, dried fruit and juices, as they are all rich in fast releasing sugar

Alternatives include seed bars, fresh fruit and diluted juice

AVOID REFINED CARBOHYDRATES like:-

  • White bread, rice, pasta, cakes, biscuits. Most breakfast cereals are devoid of nutrients and fibre

Eat slow releasing carbohydrates like wholegrain bread and pasta, brown rice, porridge oats and whole foods like fruit and vegetables CAFFEINE DAMAGES THE IMMUNE SYSTEM

It is in:-

  • Cola, Diet Coke, cocoa, coffee, tea, chocolate cake, dark chocolate, green tea

BALANCE CARBOHYDRATES AND PROTEIN This slows down the sugar release from carbohydrates.

  • Eat fruit with nuts and seeds
  • Oat cakes with humus
  • Baked potato with tuna
  • Brown rice/vegetables with fish/tofu
  • Pasta with bean/meat sauce

Most cereals have added sugar. One of the best breakfasts is egg on toast (free range/organic eggs).Always think protein first, and then carbohydrates. Protein provides regeneration and repair. A good breakfast kicks starts the metabolism for the whole day

  • Oat based cereal, porridge or museli with seed mix, flax, sunflower, pumpkin, hemp and some berries
  • Egg on toast
  • Smoothie with yoghurt, fruit and seeds

REDUCE ALCOHOL

  1. It disrupts the blood sugar balance
  2. Converts to fat
  3. Depletes B vitamins which are needed for regeneration and repair

Alternatives:- diluted fruit juices, vegetable juices etc REDUCE STRESS. Stress causes pressure on the body and affects the immune system. It stimulates the fight and flight mechanism, which raises blood sugar, and uses up nutrients like B vitamins and magnesium which are needed for energy production. It exhausts the adrenals and can lead to chronic fatigue. REDUCE STIMULANTS. Caffeine - coffee, tea, chocolate, cola, cigarettes DRINK MORE WATER 8 glasses a day - 2 litres. Dehydration leads to fatigue, which can make you crave fast energy foods. Drink frequently throughout the day. Drink preferably filtered water (chlorine free). EAT SMALL MEALS FREQUENTLY 3 small meals a day plus healthy snacks. Eat at :-8.00, 11.00, 1.00, 4.00, 7.00, 9.00. Healthy snacks are fruit with nuts and seeds, trail mix etc. Crudités and humus, Oat/rice cakes with humus, nut spread, lentil pate. Give children protein at 4.00 when they come on from school. Cut up food for them, especially fruit.

BLOOD SUGAR BALANCING GUIDELINES

  1. Eat at regular intervals
  2. Eat protein
  3. Have a good breakfast

Don’t eat white “death” foods without protein e.g. doughnuts are the worst food Eat vegetables, fruit, nuts and seeds for minerals. Eat almond butter (from health food shops).Oil deposit on the top should be stirred in. Keep in the fridge. Peanut butter is not recommended because peanuts are susceptible to moulds. Eat grains and cereals, but vary the grains eg brown basmati rice, millet, buckwheat, quinoa and oats. She said that the Chinese are moving away from so much rice in their diets, and as a result are getting all sorts of new medical conditions. Eat protein, lean red meats, chicken, oily fish. Have a dialogue with your body. In PCD antibiotics are needed, but because they are anti bacteria, they kill everything including bacteria in the gut. In the gut we have 3 to 4lbs of bacteria, and antibiotics upset the balance between the good and bad bacteria. In Germany patients are given probiotics with antibiotics to help the gut. She stressed that health begins in the gut. Depletion of good bacteria is caused by

  1. Tea/ coffee
  2. Antibiotics
  3. Alcohol
  4. Processed foods
  5. Stress
  6. Medication

Reducing these bacteria is like reducing the amount of soldiers we need to fight for us. How is body affected by bad bacteria?

  1. Bowel upsets
  2. Bloating/flatulence
  3. Colds, bugs
  4. Poor skin, acne
  5. Joint aches and pains
  6. Thrush, cystitis and bladder infections

She suggested taking probiotics and live yoghurt to counteract the effect on the gut of antibiotics She said it was important to get the right fats and oils into body like Omega 3 and Omega 6. OMEGA FATS ARE REALLY IMPORTANT IN PCD. Omegas are anti-inflammatory and build tissue structure. Essential fatty acids have to come from the diet, the body does not produce them itself.

They are in:-Flax/linseeds Hemp seed Soya beans Canola Pumpkin seeds, Dark green leaves. Eat oily fish, like mackerel, herring, seafood and algaes. If the immune system is low then the stomach does not digest vitamins and minerals properly. The stomach environment is very important. Nature designed the stomach to produce hydrochloric acid to digest protein. This declines with age. Carbohydrates inhibit HCL levels. Proteins stimulate HCL which kick starts other digestive enzymes. Antacids take these secretion levels down, and then the PH values change, which promote the growth of yeasts and unhelpful bacteria.

Beneficial drinks:- Fennel Chamomile Peppermint Ginger - chop up ginger without peeling, and put in pan of water and simmer for one and a half hours with the lid on. Put in fridge. Pour some out and top with warm water and a squeeze of lemon - helps immune system. Swedish bitters Beetroot is also very good

GENERAL TIPS

  1. Stop smoking
  2. Reduce stress
  3. Avoid cows dairy foods as they are mucus forming
  4. Cut out refined carbohydrates
  5. Dried figs and tahini paste are good for calcium
  6. Avoid wheat foods - they are a major irritant to the digestive system
  7. Take Omega 3 daily
  8. Exercise regularly
  9. Drink more water
  10. Avoid processed fats, eat butter rather than margarine. Never eat hydrogenated fat
  11. Buy organic

Lisanne told the group have how she has worked privately for three months with an adult who has PCD and was then able to avoid hospitalisation in May for IV antibiotics. She followed a high protein, gluten free diet, avoided cows‘ dairy products, having goat instead, and took various supplements (multi vitamins, magnesium, omega 3, vitamin A, vitamin B, zinc and probiotics).

Lisanne stressed that as with any change in diet if you are taking medication you should consult your doctor before coming off any treatment you have been prescribed.

To contact Lisanne you can contact her through her website http://www.bodyandsoulnutrition.co.uk. The day finished around 4 p.m. after we had all been entertained, educated and well fed. The feedback from the people that came to the day has been very positive and many of us are trying to change our diets in order that we can all look as healthy as Lisanne!

Fiona Copeland -Chairman of the PCD Family Support Group

June 2007