Treating Noonan syndrome 

There is no single treatment for Noonan syndrome, but it's possible to treat many aspects of the disorder.

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 some routine tests and checks to monitor their condition, most adults with Noonan syndrome can lead a normal life.

Heart defects

A full assessment of your child's heart function should be carried out when Noonan syndrome is diagnosed. This will help to determine if they have any type of congenital heart disease.

The treatment your child needs will depend on the type of heart defect they have and how severe it is.

  • Pulmonary stenosis may not need any treatment if it's mild, but more severe cases may require an operation to widen the narrowed heart valve or replace it with a new valve.
  • Hypertrophic cardiomyopathy may need to be treated with medication such as beta-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 to seal the hole in the heart.

Regular tests to check heart function will normally 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 your child’s growth rate is thought to be seriously reduced, treatment with human growth hormone may be suggested.

Treatment usually starts at around four or five years of age and continues until your child stops growing. A medication called somatropin is most often used. This is given as a single daily 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 about treating 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 and try to teach them how to use their muscles more effectively.

In particularly severe cases of poor feeding, your baby may need a feeding tube for a few months.

Undescended testicles

If you have a baby boy with an undescended testicle or testicles that don't descend naturally within a few months of birth, corrective surgery is usually recommended.

This is normally carried out before two 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 for undescended testicles. It involves making a small cut in your child’s tummy or groin and moving the testicle(s) into the correct position.

Read more about treating undescended testicles.

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 the child’s health and educational requirements.

Read more about special educational needs and the assessment procedure.

Other health conditions

Click on the links below to find out about treatment for some of the other problems that can affect people with Noonan syndrome:

 

Page last reviewed: 08/07/2015

Next review due: 01/07/2018