Frequently Asked Questions

Have a question about CAH? We’ve collected a number of frequent questions with answers below. We’ve been supporting people living with CAH for over 25 years so someone may have had a similar question to yours. Of course, if you can’t find an answer here, contact us.

Medication

Can my child receive live vaccinations despite being on steroids?

Yes, the dose of steroids used in CAH are equivalent to the amount produced by the adrenal glands under normal conditions, and there is NO reason for your child to be managed differently where vaccinations are concerned. The situation is quite different for people who are receiving larger doses of continuous steroids for different medical reasons. It is suggested that you consult your specialist about whether it is necessary to increase your child’s hydrocortisone prior to vaccination.

Health

Will my child grow normally and reach a reasonable adult height?

With careful treatment it should be possible for children with CAH to grow at a rate sufficient to achieve an adult height within the normal range. However, even with the very best treatment, it is not always possible to achieve perfect growth in CAH, and some individuals may end up shorter adults than they would otherwise have been. Also, the dose of hydrocortisone required to control the CAH may make it difficult for some children to keep their weight down, and this can be a particular problem for girls at adolescence. It may be helpful to have the input of a dietician – you should discuss this with your specialist.

I've heard that the blood sugar levels go down in acute illness, do sugar drinks help?

One of the responses to acute illness is that the blood sugars drop and cortical levels go up to combat this. If you measure glucose levels in children with CAH who are drowsy, you often find they are low and that is when an injection of hydrocortisone should be given without delay. Injecting promptly in this situation lessens the severity and shortens the period of illness.

My 6 year old still wets the bed. Could it be related to CAH?

A lot of children wet the bed and this simply reflects normal delay in bladder maturation. However, in CAH bed wetting should always raise the question of under-replacement with fludrocortisone. In this instance we make quite sure that the fludrocortisone is sufficient (checking that the plasma renin is properly suppressed). If a child with renin suppression on a good dose of fludrocortisone, with no symptoms of salt craving, but is still wetting the bed, then it is safe to conclude that he/she is showing ‘normal’ bed wetting tendency.

My 7 year old never has blood tests. They’re weighed and measured, but their consultant will not give blood tests, do you feel this is acceptable?

At the end of the day the most important measurements of the condition are that the child is healthy and well, they are growing along a percentile which is appropriate for that child and that the bone age is satisfactory. Monitoring varies from centre to centre and child to child depending on the severity of the CAH, but do be sure to check that if blood or urine tests are not being performed, that growth and bone age are appropriate for your child’s age.

How ill does a child have to be before increasing their dosage or giving an injection?

In the event of a mild to moderate illness (e.g. cold, cough, sore throat, tummy upset), the total daily dose of hydrocortisone should be doubled and given in 3 equal portions (morning, afternoon, evening) for the duration of the illness. If the child does not get better after increasing the tablets orally (due to continued vomiting), the hydrocortisone must be given by injection and the child taken to hospital.

What is renin?

Renin is a hormone made by the kidneys and is important in control of salt balance. If salt is replacement is inadequate renin is high. If salt replacement is adequate renin is low. Therefore, by measuring renin, the correct dose of fludrocortisone can be established.

How often should a renin test be done?

About once a year, if the child is growing well and they have normal blood pressure and electrolytes. There are no hard and fast rules. If the child’s metabolic control did not appear satisfactory, then it may need to be done more often.

How often should a child have a bone age X-ray?

Ideally on an annual basis after the age of three years. Prior to this there are so few epiphiseal centres to rate and it is difficult to ensure that you are getting the right answer.

Development

My daughter is 16, she stopped growing at 14 and has a weight problem. She has always been on twice a day medication. Would it be appropriate to change now to three times a day to try to get more growth?

If she has stopped growing and the bones in her body have fused, there is nothing you can do to get more growth. If she is on longer-acting steroids (prednisolone) then twice a day is sufficient. If she is very overweight, she would probably benefit from proper hormone re-evaluation and, although you can do nothing about growth, you should now concentrate on adequate control to permit fertility for the future.

What is the right age to tell a child about their condition and who should tell them?

This was a question asked during a recent survey, the overwhelming response was the parents/carers and not the doctor. The support of an endocrine nurse could be very helpful, especially if the parent/carer finds certain aspects of the condition hard to explain. Parents/carers invariably find that children develop at different rates and there is no magic age. However, children’s questions should always be answered and it’s important to be open and honest. They’ll only retain what they can understand so it’s likely that you’ll have to tell them more than once and add more information as they get older.

Life with CAH

Can adults with CAH drink alcohol?

We’ve not heard of any problems among our adult members with CAH when they’ve drunk alcohol in moderation. While drinking to excess has it’s usual risks, including dehydration, it can also affect someone’s ability to take medication orally.  

Are there any restrictions on competitive sports?

For most recreational competitive sports, the treatment methods used in CAH are unlikely to breach any rules . At higher level competition, the World Anti Doping Agency state that some treatment methods used for CAH would require a ‘Therapeutic Use Exemption’ in order not to break ‘Prohibited Substances’ rules.
If you are at all unsure, contact the governing body or organisation that represents the sport in question.

Can CAH affect career choices?

While most careers are perfectly possible with CAH, some may be restricted such as the armed forces. Of course, questions relating to specific careers should be directed to the appropriate professional or representing body.

Should the DVLA (Driver and Vehicle Licensing Agency) be informed that I have CAH for my driving license?

CAH isn’t listed as a ‘notifiable condition’ for the DVLA.

Can I have body piercing and tattoos if I have CAH?

We have some adult members with CAH and a wide variety of tattoos and piercings. Their advice has always been to keep blood sugar high and take extra medication if they feel it’s required before or during the procedure.

Are there any exemptions to UK prescription charges for people with CAH?

Yes. Speak to your GP or pharmacy about a Medical Exemption on the grounds of hypoadrenalism.