Noonan syndrome

Treating Noonan syndrome

There is no single treatment for Noonan syndrome, but it's possible to treatmany 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 someroutinetests and checks to monitor their condition, most adults with Noonan syndrome can lead a normal life.

Heart defects

A full assessment ofyour child's heartfunction should be carried out whenNoonan syndrome is diagnosed. This will help to determine if they have any type of Congenital heart .

The treatment your childneeds 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 mayrequirean operationto widen the narrowed heart valve or replace it with a newvalve.
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 toseal the hole in the heart.

Regular tests to check heart function will normally be carried out into adulthood.

If your childs growth rate is thought to be seriously reduced,treatment withhuman growth hormone may be suggested.

Treatment usuallystarts 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 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.

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 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 surgeryis 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 forundescended testicles. It involves making a smallcut in your childs tummy or groin and moving the testicle(s) into the correct position.

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 childs health and educational requirements.