Treatments for Noonan syndrome

What is the treatment for Noonan syndrome?

Treatment for individuals who have Noonan syndrome is based on their particular symptoms. Heart problems are treated in the same way as they are for individuals in the general population. Early intervention programs are used to help with developmental disabilities, when present. Bleeding problems that can be present in Noonan syndrome may have a variety of causes and are treated according to their cause. Growth problems may be caused by lack of growth hormone and may be treated with growth hormone treatment. Symptoms such as heart problems are followed on a regular basis.

Source: NHGRI (NIH)1

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Management generally focuses on the specific signs and symptoms present in each person. Treatments for the complications of Noonan syndrome (such as cardiovascular abnormalities) are generally standard and do not differ from treatment in the general population.[5]

Developmental disabilities are addressed by early intervention programs and individualized education strategies. Treatment for serious bleeding depends upon the specific factor deficiency or platelet abnormality. Growth hormone treatment increases growth velocity.[5]

More detailed information about treatment for Noonan syndrome can be viewed on the GeneReviews Web site. Last updated: 6/2/2015

Source: GARD (NIH)2

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Treatments for Noonan syndrome

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

For example, severe heart defects may need to be repaired with surgery, and growth hormone medication may be used to help prevent restricted growth.

Your child may initially need quite a lot of treatment and support to help manage the various problems they have. However, they'll usually need much less care as they get older, because the disorder tends to cause fewer problems in adulthood.

Read more about treating Noonan syndrome.

Source: NHS Choices UK3

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Medication known as human growth hormone can sometimes help children reach a more normal height. Left untreated, the average adult height for men with Noonan syndrome is 162.5cm (5ft 3in) and for women is 153cm (5ft).

Source: NHS Choices UK4

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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.

Source: NHS Choices UK5

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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.

Source: NHS Choices UK6

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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.

Source: NHS Choices UK7

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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.

Source: NHS Choices UK8

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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.

Source: NHS Choices UK9

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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.

Source: NHS Choices UK10

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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:

Source: NHS Choices UK11

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  1. Source: NHGRI (NIH): 25521674/ learning-about-noonan-syndrome/ 
  2. Source: GARD (NIH): diseases/ 10955/ noonan-syndrome
  3. Source: NHS Choices UK: conditions/ Noonan-syndrome/ 
  4. Source: NHS Choices UK: conditions/ noonan-syndrome/ characteristics/ 
  5. Source: NHS Choices UK: conditions/ noonan-syndrome/ treatment/ 
  6. ibid.
  7. ibid.
  8. ibid.
  9. ibid.
  10. ibid.
  11. ibid.

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Note: This site is for informational purposes only and is not medical advice. See your doctor or other qualified medical professional for all your medical needs.