Key points throughout the day:
- Listen carefully to CGD patients
- Avoid making assumptions
- Identify the underlying cause behind symptoms
- Give immediate attention and swift treatment to patients with CGD
Care and Nursing Needs in CGD
Rhian Lant, CGD CNS
- At the London hospitals, the prophylaxis dosage is calculated by age, not weight. This proves an effective way of keeping the dosage under review.
- For patients allergic to Co-trimoxazole, Ciprofloxacin is used instead.
- Fungal website - The Aspergillus Website, and Dr Fungus website.
- Ambisome (used for fungal infections) has a less harmful effect on the kidneys. As it is more expensive than other brands, the PCT may need persuading to allow usage.
- As survival rates increase, patients are faced with an increasing number of Quality of Life issues.
- A wide variety of questions need asking routinely, e.g. frequency and quality of stools.
- Mouth inflammation and soreness can be a problem and affect food intake, so suggest that the patient books an appointment with the dentist to learn how to brush the teeth properly.
- Chlorhexidine based mouthwash (e.g. Corsodyl) can be used to help clear up inflammation and ulcers but should not be used for longer than 2 weeks at a time as it can make teeth brittle. It can stain the teeth but the dentist can clean this.
- There is a trial in the USA for a new treatment for colitis - using Infliximab.
- It is important not to assume that difficulty in passing urine is due to urinary infection. In CGD this can often be caused by a granuloma blockage in the urethra. A course of steroids is used to treat this. If the problem re-occurs, give a second course of steroids and wean more slowly.
- Many psycho-social problems result from living with CGD. In a recent audit of phone calls, RL identified a number of common issues - being different, missing medical appointments to avoid anyone at work knowing about the condition; the need for teenagers to take ownership of the problem; the problems small children have are with taking medication; missed schooling and loss of confidence. To help patients avoid these issues becoming deep-seated problems, RL highlighted the CGD Clinical Psychology Service.
- Nursing checks – simple nursing checks are important – e.g. using a growth chart is very important. If delays and halt in growth are reflected, nutrition, bowel habits and pubertal development should be checked to discover the cause.
- Patients and families should be referred to genetic counsellor.
IMPORTANT NOTE :
The information contained on this website is intended only as a guideline, not as a substitute for medical advice. Always consult your doctor if you or your child has any CGD symptoms or concerns.
© 2001-2007 The Chronic Granulomatous Disorder (CGD) Research Trust
Registered Charity No. 1003425 email:cgd@cgdrt.co.uk
The CGD Research Trust is a member of the Association of Medical Research Charities (AMRC), the Genetic Interest Group (GiG) and an associate member of the International Patient Organisation of Primary Immunodeficiencies (IPOPI)
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