In the outpatient clinic for paediatric pneumology, allergology & cystic fibrosis, we treat children and adolescents with lung diseases and allergic diseases. We care for people with cystic fibrosis at any age.
Please bring along to your appointment:
Preliminary findings such as allergy tests, lung functions, doctor's letters
Photos (e.g. of skin rashes) and videos
List of medication currently being taken
Yellow examination booklet and immunisation record
Referral slip and your child's insurance card
Thank you very much!
Contact / Consultation hours
Appointments by appointment
Phone: 0731-500 57292
Fax: 0731-500 57298
E-mail: stoffwechsel.muko@uniklinik-ulm.de
Mon-Fri 08.00 - 09.00 and 11.15-12.00
Tue+Thurs 13.00 - 16.00
Please note: An appointment is only possible with a referral from your paediatrician.
For emergency consultations, please contact our emergency outpatient clinic.
Please have your paediatrician fill out the initial referral form and send it to us by email or fax.
Management
Susanne Leusch (M.A.)
Systemic family therapist (DGSF), trauma therapy, developmental psychology counsellor
The Psychological Service offers a wide range of psychological counselling and support as well as therapy and training methods. Recommendation and referral for further interventions.
Leandra Makedon - Nutritional counselling
Treatment spectrum
Our interdisciplinary team of paediatric specialists, allergists and paediatric pneumologists, nurses, social workers, physiotherapists, psychologists and nutritionists cares for and advises patients and their parents with all paediatric pneumological and allergological diseases. We care for patients with cystic fibrosis into adulthood.
Below you will find information on a selection of diseases that are treated in our outpatient clinic and information on the diagnostic procedures we offer.
Diseases
Cystic fibrosis (CF)
Cystic fibrosis is the most common congenital metabolic disease. Depending on the severity, a genetic defect leads to a malfunction of the chloride ion channels, which are responsible for the salt-water regulation of the cells. Due to the malfunction, more fluid remains in the cells and viscous secretions are excreted in the exocrine glands of the body. This mainly affects the bronchi, pancreas, intestines, liver, gall bladder and sweat glands.
Around 8000 cystic fibrosis patients live in Germany, with around 300 newborns being diagnosed every year. Thanks to new treatment approaches, the life expectancy of patients is constantly increasing, so that newborns are now expected to live to be over 50 years old.
Genetics
CF is a hereditary disease, 25% of which is inherited if both mother and father are carriers of the gene effect.
The gene carrier frequency in the European population is around 1:20 to 1:30. 70-75% of the most common mutations in Central and Northern Europe lack the coding for the amino acid phenylaladinine (F508del) on chromosone 7 at position 508. This leads to a disturbance of the salt-water regulation in the cells due to the lack of chloride ion channels
Diabetes mellitus with CF
The excretion of viscous secretions in the pancreas damages it over the course of a lifetime. This mainly affects the exocrine part, which can be compensated for relatively well by administering digestive enzymes such as lipase. However, the endocrine part responsible for the release of insulin is also affected and leads to diabetes mellitus in around 50% of patients in adulthood.
It is therefore important to ensure an appropriate diet in order to prevent diabetes. To find out more about this, you can ask our doctors or contact our nutritional counsellors.
Source
In order to recognise changes in the course of the disease at an early stage, it is important that patients visit the outpatient clinic approximately every 3 months. Routine examinations include, among other things
- Checking lung function
- blood count
- Monitoring of weight
- Sputum smear
What is a sweat test?
The sweat test measures the salt concentration in sweat. People with cystic fibrosis have a high salt content in their sweat.
The test is carried out on children or adults who frequently suffer from airway infections or on people with frequent, occasionally discoloured stools. The test is also carried out in the case of failure to thrive or growth not in line with age. There are also rarer reasons for carrying out the test. As a rule, the test is not carried out because it is suspected that your child has cystic fibrosis, but so that this disease can be ruled out with certainty. A positive test result can mean that your child has cystic fibrosis. However, other symptoms and other test results must be taken into account to confirm the diagnosis. An inconspicuous test result is very likely to rule out cystic fibrosis.
Who carries out this test?
The staff at the cystic fibrosis outpatient clinic
Does the test cause pain?
Some patients feel a slight tingling sensation at the test site (usually the forearm).
Special test discs impregnated with a chemical substance (pilocarpine) are placed on the skin of the forearm. This substance stimulates sweat production. In order to produce more sweat, the skin is also stimulated with an electrical impulse. The test is not painful, occasionally there is a slight tingling sensation. The test discs are removed after 5 minutes. The skin is slightly reddened for a short time due to the pilocarpine. A small plastic tube is attached to the skin to collect the sweat. This remains on the skin for approx. 30 minutes.
In most cases, the test gives a clear result. Either the salt content in your sweat is too high or normal. You will be informed of the result by the referring doctor. This can take up to three weeks.
If the results are borderline or if there are problems with the test (too little sweat), the test must be repeated.
Further questions?
If you have any questions about carrying out the sweat test, please contact the staff at the cystic fibrosis outpatient clinic.
If you have any questions regarding the necessity of carrying out the sweat test in your case, please contact your referring doctor.
Depending on the severity of the disease, several therapeutic approaches are available for cystic fibrosis. An individualised treatment plan is drawn up for each patient in order to achieve the best possible result:
- Nutritional therapy
- Physiotherapy and sport
- Drug therapy
- Inhalation treatment
- Oral therapy
- CFTR modulator therapy
Further information:
Hygiene measures / germs
The course of CF is largely determined by the pulmonary infestation with pathogens. Most of these pathogens can be transmitted from the environment or from patient to patient.
Preventing transmission to patients who have not yet been affected by any pathogens is therefore an important treatment approach.
One focus of preventing the acquisition of germs or the passing on of germs is hand disinfection, which must be observed for all those affected in the neighbourhood. (Parents, partners, friends, doctors, nurses...)
Precautionary measures:
- Do not use the hot tub
- Flush the toilet in the morning (with the lid closed) before use
- Let the taps run for a few minutes before use
- Clean inhalation devices after each use and dry sufficiently (at least 30 minutes)
- Avoid hair dryers in public toilets
harmless:
- Visiting public swimming pools
- Playing in the garden
- Visiting public playgrounds
- Visits to the dentist (discussion with dentist advisable)
Further information:
What You Should Know About Germs - cff usa.pdf
Pseudomonas aeruginosa is a soil and water pathogen that occurs primarily in moist environments.
- damp soils, surface water, tap water
- washbasins, showers, toilets, dishwashers
- Dialysis machines, medicines, disinfectants
In terms of hygiene, PPE is considered an important nosocomial germ, which means that PPE can be transmitted during hospitalisation. In our outpatient clinic, PSA-positive and PSA-negative patients are therefore treated separately, both in terms of time and location.
Burkholderia is a wet and soil germ and is found almost everywhere in nature, especially in damp environments:
- Drains of washbasins, showers, bathtubs
- Sediments of ponds, ponds, rivers
- Root and tuber areas of plants and vegetables
Transmission from person to person is rather rare, although the bacteria have different infection potential.
More often than from patient to patient, germs are transmitted through water.
Staphylococcus aureus is the most common germ in infants and young children with cystic fibrosis. The germ is found almost everywhere in nature, as well as on the skin of humans, but does not usually lead to illness.
However, if the immune system is weakened, it can lead to skin infections, pneumonia, etc.
This germ is frequently detected in patients colonised with Pseudomonas aeruginosa. S. maltophilia occurs everywhere in nature:
- Waters
- soil
- animals
- plants
- humans
However, findings to date do not indicate that the germs have a negative effect on lung function and thus also on the course of the disease.
Asthma is the most common chronic respiratory disease in children. In childhood, allergies are usually the cause of repeated breathlessness or coughing. It is important to precisely identify the triggers in order to offer individualised therapy. Nowadays, asthma can usually be excellently controlled using modern diagnostics and therapy.
One of the most common allergic diseases with allergic inflammation of the mucous membranes of the nose and eyes. In addition to pollen, a house dust mite allergy, for example, can also be a trigger. Keeping a symptom log helps to quickly identify the triggers and to confirm these specifically through allergy tests. In addition to anti-allergy medication (nasal spray, eye drops, anti-allergy tablets), hyposensitisation ("allergy vaccination") can help to control symptoms.
This allergic inflammation of the skin often occurs without a clear trigger, and even extensive diagnostic clarification remains without results in many patients. It is particularly important to strengthen the skin's barrier function through basic therapy with nourishing and moisturising creams and lotions. Severe inflammation is treated individually with anti-inflammatory medication (corticosteroids, calcineurin inhibitors, etc.).
The decisive aspect when a food allergy is suspected is the precise description of the observed reaction, including suspected triggers. Targeted allergological diagnostics should only be carried out if corresponding foods are suspected. We check unclear findings by means of inpatient food provocation testing. To do this, we admit you and your child to our hospital for 2-3 days and test the tolerance of the relevant foods under close supervision.
Severe skin reactions after insect bites are common, allergic reactions up to allergic shock are fortunately rare. Comprehensive specialised diagnostics must be carried out in the event of such reactions. We provide training in the use of emergency medication, including adrenaline injections, and offer inpatient administration of ultra-rush doses of hyposensitisation to insect venom. This therapy can protect >90% of patients from recurring severe allergic reactions.
We also advise and examine for rare lung diseases, lung malformations, urticaria, drug allergies, unclear anaphylaxis, mastocytosis, questions about vaccinations and allergies,...
Diagnostics & range of services
Sweat test: The sweat test is a painless examination technique. A drug is first applied to the skin using a weak electric current to stimulate perspiration. The sweat is collected for 30 minutes and analysed for chloride content. The chloride content is increased in cystic fibrosis. The sweat test is used, for example, in the case of conspicuous newborn screening for cystic fibrosis or clinical suspicion of cystic fibrosis. If the sweat test is abnormal, we follow up with a genetic test (blood test).
Pulmonary function test: We offer the "major" pulmonary function test with spirometry and bodyplethysmography. For the body plethysmography, the person being examined must sit in a cabin and perform certain breathing manoeuvres. The examination can usually be carried out from the age of 5-6 years. A so-called "table spirometry" without sitting in a cabin is also available and is sometimes easier for young children to perform.
We use exercise tests such as treadmill exercise and methacholine provocation to check whether the lungs are particularly sensitive to certain stimuli.
We also offer the measurement of NO in the exhaled air, which can be an indication of (allergic) inflammation in the lungs. In the case of special lung diseases, we can check the diffusion capacity of the lungs.
Lung endoscopy/bronchoscopy: Our experienced team of specialists and paediatric pneumologists carry out lung endoscopies to clarify certain lung diseases. The examination is carried out under anaesthetic by our paediatric anaesthesia team in our procedure room right next to the paediatric intensive care unit.
Allergy tests: The most important indication of the presence of an allergy is the report on the course of the reaction. Through targeted reporting and enquiries, we can then follow up with additional tests in the form of allergic skin or blood tests. If the results are still unclear, we offer provocation tests under inpatient conditions.
Further specialised diagnostics: In cooperation with partners in Ulm and throughout Germany, we offer a wide range of further specialised diagnostics, e.g. immunodeficiency diagnostics, nasal provocations, cilia function tests,...
Mukoviszidose e.V. (German Cystic Fibrosis Association) www.muko.info
Mukoviszidose Förderverein Ulm e.V. www. muko-ulm.de
Society for Paediatric Allergology and Environmental Medicine www.gpau.de
Society for Paediatric Pneumology: https: //www.paediatrische-pneumologie.eu/
Video instructions for correct inhalation with all available products (German Respiratory League) https://www.atemwegsliga.de/richtig-inhalieren.html
Kartagener syndrome and primary ciliary dyskinesia e.V. www. pcd-ks.info/
Parents' guide to allergological and lung diseases https://www.gpau.de/eltern-kinderinfos/elternratgeber/
Information for parents on asthma: https://www.gpau.de/fileadmin/user_upload/GPA/dateien_indiziert/Elternratgeber/EKI_Asthma_1.pdf
Parent information on food allergies: https://www.gpau.de/fileadmin/user_upload/GPA/dateien_indiziert/Elternratgeber/Elterninfo_NahrungsmAll.pdf
Parent information on atopic eczema ("neurodermatitis"): https: //www.gpau.de/fileadmin/user_upload/GPA/dateien_indiziert/Elternratgeber/Elterninfo_Neurodermitis.pdf
Parent information on hives (urticaria): https://www.gpau.de/fileadmin/user_upload/GPA/dateien_indiziert/Elternratgeber/EKI_Urticaria.pdf
Take bus line 7 from "Hauptbahnhof" to the bus stop "Kliniken Michelsberg".
Route planner to Michelsberg:
For your individual journey planning by train, bus, city bus, bicycle or car to the Michelsberg clinics, you can use the Deutsche Bundesbahn route planner here to the route planner
By car
Paid parking is available in the signposted clinic car park with access from Eythstraße to the west of building 13 and in the multi-storey car park with access also from Eythstraße or Schwabstraße. Further car parks are available for your visitors to the east of Prittwitzstraße and to the south of the urology department. The paediatric and gynaecological clinics can be reached quickly from this car park.
From the direction of Stuttgart/Munich
- take the A8 motorway to the Ulm-West exit (62)
- at the Ulm-West exit (62) take the B10 (direction Dornstadt)
- keep half right on the B10 (direction Friedrichshafen / Ulm)
- after approx. 3 km turn right onto the L1165 (direction Ulm)
- keep half right on the L1165 and after approx. 600 m turn into Stuttgarter Straße
- after approx. 3.4 km in Ulm turn right into Eythstraße
- after 150 m turn left to the car park "Prittwitzstraße" and "südlich Urologie" or after another 300 m turn left to the inner courtyard car park and multi-storey car park
From the direction of Sigmaringen
- on the B311 to Ulm
- in Ulm keep half right on Zinglerstraße/B311
- turn left before the Ehinger Tor (Bismarkring)
- after approx. 450 metres, turn half right onto Hindenburgring (direction Kliniken)
- Keep half right again and enter the Blaubeurer Tor roundabout
- take the 1st exit (direction Kliniken Michelsberg, Safranberg)
- cross the Ludwig-Erhard-Bridge into Karlsstraße
- after approx. 1 km on Karlsstraße turn left into Frauenstraße (Michelsberg clinics)
- follow the main road for approx. 200 m until after the railway subway (Frauenstraße)
- turn right into Schwabstraße to the multi-storey car park
From the direction of Blaubeuren
- on the B28 to Ulm
- In Ulm, drive into the centre of Blaubeurer Ring via Blaubeurer Straße
- Take the 2nd exit (direction Kliniken Michelsberg, Safranberg)
- cross the Ludwig-Erhard-Bridge into Karlsstraße
- After approx. 1 km on Karlsstraße, turn left into Frauenstraße (Michelsberg clinics)
- follow the main road for approx. 200 m until after the railway subway (Frauenstraße)
- Turn right into Schwabstraße to the multi-storey car park
From the direction of Biberach/Friedrichshafen
- on the B30 motorway to Ulm
- at the Neu-Ulm motorway junction, keep half right and join the B28 (direction NU)
- after approx. 3 km in Ulm, keep half left and drive onto the B10/Bismarkring (tunnel)
- keep half right here and after approx. 1.3 km enter the Blaubeurer Ring
- Take the 1st exit and cross the Ludwig-Erhard-Bridge into Karlsstraße
- After approx. 1 km on Karlsstraße, turn left into Frauenstraße (Michelsberg clinics)
- Follow the priority road for approx. 200 m until after the railway subway (Frauenstraße)
- turn right into Schwabstraße to the multi-storey car park
From the direction of Kempten
- on the A7 motorway to Ulm
- at junction Hittistetten (122) turn right onto B28 (direction: Senden)
- after approx. 12 km in Ulm keep half left and drive onto the B10/Bismarkring (tunnel)
- keep half right here and after approx. 1.3 km enter the Blaubeurer Ring
- Take the 1st exit and cross the Ludwig-Erhard-Bridge into Karlsstraße
- After approx. 1 km on Karlsstraße, turn left into Frauenstraße (Michelsberg clinics)
- Follow the priority road for approx. 200 m until after the railway subway (Frauenstraße)
- turn right into Schwabstraße to the multi-storey car park
Clinical studies
We can regularly offer participation in clinical studies in the field of cystic fibrosis and food allergies. Please contact us if you are interested in participating. You can also find out more about our study centre.
Studies currently being conducted:
Participation currently possible:
-
Recruitment completed, study ongoing:
Peanut allergy - Patch study: VITESSE: A double-blind, placebo-controlled, randomised phase 3 study to evaluate the efficacy and safety of epicutaneous immunotherapy with DBV712 250 µg in 4-7-year-old children with peanut allergy
VX20-121-104: Open-label phase 3 study to evaluate the long-term safety and efficacy of VX-121 combination therapy in patients with cystic fibrosis
VX21-445-124: A double-blind, randomised, placebo-controlled Phase 3 study to evaluate the efficacy and safety of ELX/TEZ/IVA in patients with cystic fibrosis aged 6 years and older with a CFTR mutation unresponsive to F508del ELX/TEZ/IVA.
Starting soon:
Cystic fibrosis: observational study on pancreatic function in children < 12 months (start probably end of 2024)
Premature babies: Observational study for former extremely premature babies aged 12 years (start presumably at the end of 2024, details to follow)
Register
We participate in the Muko.web registry, the PCD registry and the ChILD registry.