There's no single treatment for Noonan syndrome, but it's possible to treatmany aspects of the condition.
Your child may initially need quite a lot of treatment and support to help manage the various problems they have. However, they'll typically need much less care as they get older.
Although they'll probably need to have someroutinetests and checks to monitor their symptoms, most adults with Noonan syndrome can lead a normal life.
Heart defects
A full assessment ofyour child's heart function should be carried out whenNoonan syndrome is diagnosed. This will help determine whether they have any type ofcongenital heart disease.
The treatment your childneeds will depend on the type of heart defect they have and how severe it is. For example:
- pulmonary stenosis may not need any treatment if it's mild,but more severe cases mayrequirean operationto widen the narrowed heart valve or replace it with a newvalve
- hypertrophic cardiomyopathy may need to be treated with medication such asbeta-blockers or surgery to remove or destroy some of the excess heart muscle
- septal defects may not need any treatment if they're small because they may get better with age, but more severe cases may require an operation toseal the hole in the heart
Regular tests to check heart function will usually be carried out into adulthood.
Read more about treating congenital heart disease.
Restricted growth
Your child's size and growth rate will be regularly assessed throughout their childhood. If their growth rate is thought to be seriously reduced, treatment withhuman growth hormone may be suggested.
Treatment usuallystarts at around 4 or 5 years of age and continues until your child stops growing. A medication called somatropin is most often used. This is givenas a singledaily injection.
Side effects of somatropin are uncommon, although your child is likely to experience some temporary soreness, itchiness and redness at the site of the injection.
Read more abouttreating restricted growth.
Feeding and speech problems
In children with Noonan syndrome, weak muscles in the mouth can sometimes cause speech and feeding problems. They may be referred to a speech therapist for help and support.
The speech therapist will help your child develop the muscles in their mouth andtry to teach them how to use their muscles more effectively.
In particularly severe cases of poor feeding, your baby may need afeeding tube for a few months.
Undescended testicl*s
If you have a baby boy with an undescended testicl*, or testicl*s that don't descend naturally within a few months of birth, corrective surgeryis usually recommended.
This is normally carried out before 2 years of age, because treating the problem early on should increase the chances of fertility being unaffected.
A surgical procedure known as an orchidopexy is the usual treatment forundescended testicl*s. It involves making a smallcut in your child’s tummy or groin and moving the testicl*(s) into the correct position.
Read more abouttreating undescended testicl*s.
Learning disabilities
If your child is diagnosed with a learning disability, it doesn't necessarily mean they can't be taught in a mainstream school. However, children with more severe disabilities may benefit from attending a specialist school.
To ensure your child gets the support they need, an Education, Health and Care (EHC) plan may need to be drawn up. This is a type of care plan designed to meet your child's health and educational requirements.
Read more aboutLiving with a learning disability.
Other health conditions
Find out about the treatment for some of the other problems that can affect people with Noonan syndrome:
Page last reviewed: 14 September 2021
Next review due: 14 September 2024
