Cornelia de Lange syndrome – Treatment, Prevention and Home Remedies for Cornelia de Lange syndrome
Cornelia de Lange syndrome (CDLS) is a rare disorder that affects the development of the body and the intensity may vary from mild to severe. This disorder is characterized by slow growth before and after birth, intellectual disability, skeletal abnormalities and the facial differences include long eyelashes, widely spaced teeth and a small upturned nose. Some of the children may suffer behavior problems that affects the communication and social interaction. Few children are found to suffer from cleft lip and palate. Seizures, eye problems, skeletal problems and heart defects have been reported with this condition. This genetic disorder affects 1 in 10,000 to 30,000 newborns.
Though there is no cure for this genetic disorder, but a child is treated depending on the severity of this disorder. The treatment plan includes the following:
The various intervention for psycho motor delay should be emphasized on. They include:
- Computer programs that emphasize on visual memory is more beneficial than the simple verbal instruction.
- Perceptual organizational tasks should be emphasized.
- Tactile stimulation helps the children remember and perform maximally.
- Fine motor activities should be stressed in education especially activities related to daily living.
Surgery can be done for the following conditions:
- Hip discolorations
- Lacrimal duct stenosis
- Undescended testis
- Intestinal malrotation
- Pyloric stenosis
- Gastroesophageal reflux
- Nasal polyps
- Cleft lip and cleft palate
The following specialists need to be consulted. They include:
- Hearing specialist
- Gastroenterologist and nutritionist
Genetic disorders cannot be prevented but before the birth of the baby, couples can go for newborn screening. There are many procedures that are being used by people. They include:
- Preimplantation genetic diagnosis is a test where the researchers can screen specific chromosomes for certain diseases. These tests can prevent from passing the genetic defect onto another child. This can also limit the number of implantation failures and spontaneous abortions.
- The other technique used is Karyomapping where doctors detect both chromosomal abnormalities and single gene defect with a single test
- These technologies will continue to become widespread, especially the new techniques like karyomapping make it more accessible.
- Researchers are waiting for a future in which genetic disorders have been eradicated altogether, as they are working for it which can become a reality in the near future.
Raising a child with this syndrome can be physically exhausting and emotionally draining. Here are the ways to raise a child suffering from this syndrome:
- Firstly find a team of trusted professionals who include teachers and therapists as they know the resources for children with such disabilities.
- Seek out other families struggling with the challenges of this syndrome.
- Learn about the disorder as this helps you to understand your child better and know his/her attempts to communicate.
- Aromatherapy and massage are beneficial for the children and youngsters suffering from Cd LS.
- The well known oils used include basil, eucalyptus, frankincense, myrrh, peppermint and tea-tree oil.
- These oils should be blended with sunflower oil before being applied to the skin directly.
- Music therapy sessions are very useful and miraculous.
- Children lacking certain senses are encouraged to play with equipment that helps to stimulate those senses.
- In case of cleft lip and palate, they may suffer from feeding problems.
- Feed the babies in an upright position as this prevents the regurgitation of the food back into the food pipe.
- Give lots of fresh fruits and vegetables in the form of juice.
- They may be prone to many infections like cough and cold, so protect them from such infections by giving a balanced diet.
- Make the child feel as normal and acceptable even with this disorder.
- This may give the child a sense of well being.