Microcephaly — Scope | Disability forum
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

Microcephaly

Options
whitelily
whitelily Community member Posts: 2 Listener
My baby girl has a diagnosis of microcephaly and quad CP. She's now 9 months old and 4SD below the mean. Her brain isn't growing at the top on either side so her skull fused. I'm aware of the life expectancy being low for this but looking for others with experience of this whatever the outcome.

Comments

  • sarahpratten
    sarahpratten Community member Posts: 35 Courageous
    Options
    Microcephaly was a problem for my son too, but at 20 months old we started The Scotson Technique (TST) after which he had huge improvements all round, including head growth. We also take him to a cranial osteopath which helps a lot.
  • Rocky
    Rocky Community member Posts: 76 Listener
    Options
    Hi,

    Microcephaly is a condition where the circumference of the head is smaller than normal. Often due to the brain not developing properly which can be caused by genetic abnormalities, infection or other problems during early pregnancy.

    There are no treatments that can return the child's head to a normal size or shape so paediatric neurologists will usually recommend a programme of different therapies to aid the child in achieving maximum function. The prognosis and what the child will achieve will vary with each individual. Depending on the severity some children will have a mild disability and maybe experience seizures and learning difficulties but others will have normal intelligence, continue to develop and meet milestones and their head will grow and can return to a normal size in relation to the child's age.

    I think it is very important that if you want to explore alternative therapies, you check them out first and ensure they are based on clinical evidence and clinical trials. The Scotson Technique suits some children but not others so it can be quite expensive trying out different techniques that may or may not help your child.

    Scope publishes a list of questions that parents should ask before embarking on any treatment or therapy. You can find this information on http://www.scope.org.uk/support/families/therapies/faqs


Brightness

Complete our feedback form and tell us how we can make the community better.