Management

     

Treatment for babies and children affected by congenital CMV will depend on many factors, including whether they have symptoms at birth, how serious these symptoms are, and when diagnosis is made.

This section sets out the treatment currently available for babies diagnosed in the first few weeks of life, including the benefits and risks of this treatment.

My baby has been diagnosed with congenital CMV,  what type of follow up should we expect?

All babies born with congenital CMV should be carefully assessed for any symptoms at the time of diagnosis. All children should continue to be monitored regularly, this is also the case for children born without any symptoms, as some problems only develop over time.

When babies are first diagnosed with congenital CMV the following tests are normally done:

  • Blood tests to check the blood count (red blood cells, white blood cells and platelets), kidney and liver function and the amount of CMV virus in the blood; 
  • Brain scan.
  • Hearing test.
  • Eye test.

After this, all children should be regular monitored:

  • Babies who receive anti-viral treatment will have blood tests every few weeks whilst on treatment.
  • All children born with congenital CMV should have a hearing assessment every three to six months until the age of three and then yearly until six years old.  This is particularly important as hearing loss is often progressive and may get worse over time.
  • All children born with congenital CMV should have a clinical assessment by a Paediatrician at around one year old to check that their development is as expected. Ongoing follow-up with a paediatrician will be required for some children.
  • Children born with symptoms of congenital CMV should have an annual eye test until the age of five.

Unless your doctor has advised you otherwise, all children with congenital  CMV infection should receive the routine immunisations recommended for all children.

I haven’t been offered this follow-up, what should I do?

There are no statutory guidelines for treating and managing congenital CMV in the UK, therefore there may be some differences between individual doctors or hospitals.

If you are concerned about on-going treatment of your child, you should speak to the doctor looking after your child in the first instance. If you have further concerns, you are entitled to ask to see another doctor for a second opinion. The care of children with congenital CMV is usually overseen by a paediatric infectious diseases specialist.

My child has been diagnosed with congenital CMV, what can I expect for their future?

As with any child, it is difficult to predict what the future holds for a child with congenital CMV. At CMV Action we understand just how difficult a diagnosis of congenital CMV can be for your family. The early days following diagnosis can be bewildering and upsetting. As your child gets older they may exceed expectations or face new challenges as a result of the virus.

Our dedicated team of support volunteers have all had experiences of congenital CMV. They are on hand to talk to you about your experiences, point you in the direction of further information or put you in contact with parents facing similar issues.

Whilst other parents can offer a wealth of advice and support, we recommend that you discuss any concerns about your child’s health with their doctor.

There are many professionals who may be involved in the care of your child. Please contact CMV Action if you need further advice.

Title

Area of expertise

Paediatrician

Doctor specially trained for babies and children.

Infectious Disease Specialist

Doctor who specialises in the diagnosis and treatment of infectious diseases like CMV. These are in the larger hospitals so you may be referred.

Neurologist

Doctor who specialises in disorders of the brain, spinal cord, nerves and muscles. Will advise on epilepsy.

Audiologist

Specialist in identifying, diagnosing, treating and monitoring hearing loss. They will advise on hearing aids and can refer you to the Cochlear Implant team.

Portage/Early years teachers

The team will offer support and advice to disabled children and their families at home. Portage is not available in all Local Authorities.

Speech and Language Therapist SALT

Speech and Language Therapists provide support for children who have difficulties with communication or with eating and drinking. They will also help with sensory issues and language disorders.

Physiotherapist

Physiotherapists help with motor difficulties through movement and exercise. They liaise closely with Occupational Therapists.

Occupational Therapist OT

Occupational Therapists advise parents and children on equipment that will help with their daily lives. They may also help with sensory issues. They liaise closely with physiotherapists and will help devise suitable programmes.

Psychologist

Psychologists study behaviour, thoughts and feelings and advise on how to manage any difficulties. They will advise on behaviour difficulties.

Dietician

The dietician will assess nutritional needs based upon your child’s medical condition and help with feeding issues.

Teacher of the Deaf/ Teacher of the Visually Impaired

Teachers with extra specialism in hearing and vision difficulties.

     

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