Additional Therapy

INTEGRAL MEDICIN

For even more quality of life in daily routine

With consistent therapy, you can improve your child’s quality of life decisively.

A fixed daily structure, in which you schedule your child’s therapies firmly, will help you to remember all therapies and medications. Checklists are helpful to visualize achievements and to encourage additional motivation. It is important that you make yourself aware of potential setbacks and motivation holes which occur particularly in periods of limited times, increased pressure and acute illnesses. In view of this, it is essential that you treat yourself and your family to something to look forward to during more difficult periods.

Psychological Support

Once the diagnosis of a chronic disease has been made, affected children and their families have already been through a long period of uncertainty. The emotional ups and downs and the incertitude lead to anxieties which again induce feelings of strain and powerlessness. Such feelings and thoughts are human and are perceived very differently by the affected children and their families.

Parents of a child suffering from chronic lung disease need a lot of energy and stability to cope with many challenges that come up with their child’s disease in addition to the normal, turbulent family life and their professional commitments.

Therefore, it is particularly important that affected families seek for help and support as early as possible. Advice from trained psychologists and psychotherapists can help affected children and their parents with strategies on how to cope with this new situation. A psychosocial service can point out specific assistance and also give legal advice on how to get support. It is important that you speak to your pediatric pulmonologist about such psychological and psychosocial support. There are various choices in every health system which offer counselling programs in order to support affected children and their families in coping with disease-related fears and difficulties in dealing with chronically ill children.

In addition, it is important to exchange information with other affected families. Through our network of experts, we would like to make it easier for you to contact a medical expert nearby your area, and thus to help to ensure that your child receives the right treatment and support.

Furthermore, we cooperate with the European Lung Foundation which has put together further information and support for parents, caregivers and family members of children with rare and chronic lung diseases, developed with the help of carers and healthcare professionals across Europe www.europeanlunginfo.org/child.

Breath Therapy (Physio Therapie)

Physiotherapy

In many rare lung diseases, and in BO, the ventilation and the proper self-cleaning of the small airways (bronchioles) is impaired. As a result, less oxygenated blood circulates to the heart and through the body which facilitates further inflammatory processes.

In order to loosen the mucus within the small airways and throughout the lungs, specific chest physiotherapy is required in addition to the regularly inhaled therapy. To perform such specific chest physiotherapy accurately, it is important that the child and the family are instructed properly by a qualified chest physiotherapist. The chest physiotherapy should be carried out regularly on a daily basis and should be supervised and adjusted to current changes and needs by a qualified physiotherapist on a regular, weekly or monthly, basis.

Mobilization of mucus

The patient and her or his family must learn independently how to master the daily chest physiotherapy such as autogenic drainage. Children from the age of 4 can start to learn some techniques. The aim of these exercises is to mobilize mucus and mucus plugs which will enable the child to cough up. Thus, lung function and gas exchange improve significantly. There are further devices for your child to support and to facilitate the mobilization of mucus. These aids include devices which prevent collapse of the small airways called bronchioles by increased resistance during exhalation and loosen the mucus by oscillation e.g. Flutter, PEP system, RC cornet.

Trampolines and devices from sport medicine such as bicycle ergometer, treadmill, and devices for muscle strengthening are effective and can be used in addition.

Keep the chest flexible

It is important to ensure good mobility of the chest, as difficult breathing and recurrent episodes of persistent cough can lead to reduction in chest mobility. Manual techniques or exercises with specific physiotherapeutic equipment such as „Pezziball“ can be used for this purpose.

Start physiotherapy early

Respiratory physiotherapy should be started early after diagnosis. There are several reasons for this: smaller children are more willing to integrate daily physiotherapy into their daily routine than adolescents. They learn the breathing techniques in a playful way. Once the therapy is firmly established, adolescent will continue the technique naturally. Furthermore, body perception and sense of well-being are trained early in young age.

Find a therapist

Unfortunately, there are not many physiotherapists which are specifically trained in pediatric respiratory physiotherapy and rare lung diseases. We would always recommend to speak to your pediatric pulmonologist and to your local pediatrician. They may be able to find a physiotherapist nearby with experience in other lung diseases such as cystic fibrosis or adult respiratory medicine.

Nutrition

Nutrition can support Therapy

A balanced nutrition is very important for a child with chronic lung disease and supports its therapy overall. A healthy diet can improve health and quality of life of children with chronic lung diseases enormously. In addition, eating should be considered as joyful and a tasteful pleasure for the whole family. Every parent knows that children are not always particularly accessible to healthy food.

Increasing Energy Demand

The nutritional status of children with severe, chronic lung diseases is often closely related to the severity of the disease.

In bronchiolitis obliterans, energy requirements and an increased energy consumption are influenced by the underlying inflammatory process, possibly as a side effect of some treatment such as corticosteroids and especially by the significantly increased work of breathing.

At the same time, the appetite can be reduced by the inflamed lungs, which makes it even more difficult to provide sufficient calories to compensate for the energy loss. As a result, affected children often lose weight in the course of a severe lung disease.

Insufficient weight gain

Insufficient weight gain in children can lead to frequent respiratory tract infections and ultimately to a reduced lung function. This is also one of the reasons why children are measured and weighed at every follow-up appointment. Depending on their nutritional status, further options on nutritional improvement will be discussed.

Snacks between meals may be recommended, the diet may be enriched with further calories and a balanced supplementary diet may be considered.

However, according to current knowledge, both quality and quantity of calories are decisive. A healthy, adequate and well-balanced diet with high-quality food helps to improve the quality of life considerably.

In view of the fact that each patient and each family are different, any case has to be assessed and considered individually and therefore, we always recommend a nutritional assessment by a professional dietician.