How to be Successful in Medically Transitioning Your Child
There is an inevitability that everyone will age. One of the first signs of aging is a change in our senses. Sight and hearing start to decline. Smell and taste seem less distinct. Our ability to touch can be lessened due to numbness or a medical issue, such as arthritis. These are the same changes that happen in individuals with CdLS. Individuals with special needs rely upon these senses to fill in when limitations have been present, and with aging, this can lead to increased difficulties.
When an individual with CdLS ages it is important to know that organ systems can be affected. The GI tract can be impacted, especially with long-term complications of gastroesophageal reflux and abnormal bowel motility causing chronic constipation and an increased risk for bowel obstruction. There is a risk for obesity. Bones become less dense (osteoporosis) over time, compounded by lower testosterone or estrogen that is seen in CdLS. In males the prostate enlarges earlier than expected and this can lead to urination difficulties. Females tend to continue menstrual periods as in unaffected females. Facial features seem to age quicker than the body, and often, individuals with CdLS will look older than their unaffected peers. Kidneys, hormoneproducing organs, lungs and other GI organs seem to continue as they have been. In terms of the brain, thinking is not necessarily slower but people with CdLS seem to get a little quieter, and in general prefer to be at home rather than out and about.
There is a need for an adult physician to be caring for individuals with CdLS transitioning into adult care. Classically, pediatric providers have maintained care for children with special needs long into adulthood, but as the heart and blood vessels, cholesterol, thyroid hormone and others develop adult-onset conditions, appropriate medical care can be beyond their scope of knowledge. It is best to start the transition process long before it is needed. Identify adult providers in the area who are familiar with individuals with special needs. Ask regional providers in your area if there are some better known and excellent adult providers. Call the offices and ask if the transition can be spread out over a longer period. Bring the CdLS Foundation Adult Guidelines when meeting with the adult care providers. Make sure both you and your child are comfortable with the new provider(s) and able to ask questions.
Reaching Out (ISSN 1097-3052) Cornelia de Lange Syndrome Foundation, Inc. , published on 15 May 2019
