Congenital Adrenal Hyperplasia - Central Manchester University ...

This leaflet aims to explain Congenital
Adrenal Hyperplasia and how this will
affect your child.
What does Congenital
Adrenal Hyperplasia mean?
• Congenital means from birth.
• Adrenal means gland above
the kidneys.
• Hyperplasia means overgrowth.
This means that your child has been
born with an overgrowth of the glands
above their kidneys.
What is the main problem in
Congenital Adrenal
Hyperplasia?
The adrenal glands are unable to make
enough of a hormone called cortisol
and also in some cases a salt retaining
hormone called aldosterone. The body
senses that there is no cortisol and
stimulates the adrenal glands to grow
that is hyperplasia. Other harmful
steroids called androgens (male
hormone) are made instead.
Will my child develop
normally?
With regular treatment, your child will
develop normally.
Without treatment, the harmful
androgens stimulate growth to occur
too quickly. Early puberty can also
affect behaviour leading to aggression.
Why do we need cortisol?
Cortisol helps fight physical stresses to
the body for example, an injury or a
bad infection.
Why do we need
aldosterone?
This is a salt retaining hormone which
balances salt levels in the body. If your
child has salt-losing Congenital Adrenal
Hyperplasia this means that they
are unable to make cortisol and
aldosterone and they will become very
ill due to the loss of salt if they do not
have their replacement treatment.
What medication does my
child need to take?
Because the body does not make
cortisol or both cortisol and
aldosterone, a tablet is required as a
replacement. The tablet to replace
cortisol is known as Hydrocortisone.
The tablet to replace aldosterone is
known as Fludrocortisone.
Occasionally, extra salt is needed (also
called saline or sodium chloride).
Do the tablets need to be
taken for all my child’s life?
Yes, treatment is for life.
The tablets need to be taken at regular
intervals throughout the day. Without
treatment, your child will become very
ill, in babies this is life threatening.
Can my child lead a
normal life?
Yes, treatment is for life, but with
regular check-ups and as long as your
child has their treatment regularly,
they should have a full and normal
healthy life.
What to do if your child
is unwell:
If your child has a mild cold which is
not affecting their daily activities, do
nothing.
If your child feels unwell, has a
temperature and normal activities are
affected, give them double or triple
the normal dose of cortisol throughout
the day for 48 hours. After this time
resume normal daily medication.
If your child is being sick and is unable
to keep the tablets down seek urgent
medical advice at your local children’s
hospital.
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If you have been taught and feel
confident give an emergency injection
of hydrocortisone to your child, and
then ring 999.
Contacts
Doctors:
Consultants in Paediatric
Endocrinology
Professor P Clayton 0161 701 1632
Dr I Banerjee 0161 701 1675
Dr L Patel 0161 701 1632
Dr S Ehtisham 0161 701 1683
Dr R Padidela 0161 701 1628
Dr M Skae 0161 701 1630
Monday – Friday 9.00 am – 5.00 pm
No Smoking Policy
The NHS has a responsibility for the
nation’s health.
Protect yourself, patients, visitors and
staff by adhering to our no smoking
policy. Smoking is not permitted within
any of our hospital buildings or grounds.
The Manchester Stop Smoking Service
can be contacted on Tel: (0161) 205 5998
(www.stopsmokingmanchester.co.uk).
Translation and Interpretation Service
Do you have difficulty speaking or understanding English?
Royal Manchester
Children’s Hospital
What is Congenital
Adrenal
Hyperplasia?
Information for Parents
and carers
Surgeon:
Consultant Paediatric Surgeon
Mr Antonio Morabito 0161 701 2194
Monday – Friday 9.00 am – 5.00 pm
Specialist Practitioners in
Endocrinology
Julie Jones 0161 701 2587
Elaine O’Shea 0161 701 2587
Monday – Friday 8.30 am – 4.30 pm
Further information
www.cah.org.uk
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☎ 0161 276 6202/6342
Endocrinology Department
Royal Manchester
Children’s Hospital
Oxford Road
Manchester
M13 9WL
www.cmft.nhs.uk
© Copyright to Central Manchester University Hospitals
NHS Foundation Trust
TIG 76/11 Produced August 2011 Review August 2013
(SF Taylor CM12081)