Transitions, no matter what the age and personal situation can be a challenge. Add Gorlin syndrome to this and there is another hill to climb. In ways, raising children is like building pyramids. Creating a solid foundation and knowledge base for them to take into adulthood is critical. Here are some tips to help with this.
As much as reasonably possible, it is best to make a child with Gorlin syndrome the center of their care team. Clearly, the terminology and the level of inclusion in decision making evolves over the years. For example, young kids have “skin bumps” and as they grow, they learn that these are skin cancers that have to be removed because then they are gone, cured. Patients, parents, caregivers, and medical professionals should communicate in an age and circumstance appropriate manner. Questions should be welcomed and answered by all. As a parent / caregiver, if you have issues with how a physician communicates with or in the presence of your child or loved one, consider private conversations, and if needed, look for an alternate physician. You are your child’s strongest advocate. Use your voice when needed.
Then, over the years and as life evolves, help children learn to be their own advocate.

  • Teach them about Gorlin syndrome, what it is, and the things that you and they need to do to help themselves.
  • Suggest they ask questions of their physicians. Ask the doctor to talk to your child as if you were not in the room, even though you are. This helps children feel comfortable with the role they take on as their own advocate in adulthood. Offer the child time to talk to their doctor(s) one-on-one.
  • Suggest that they create a list of questions on paper and/or in their phone so that they do not forget. Parents/caregivers should do the same thing. Remind them that your list is ready and do they know what they want to ask too?
  • Encourage them to ask:
    Why?
    What will it feel like?
    What will I look like?
    What can I do?
    What can’t I do?
    When can I resume my activities?
    Can my parents be with me?
  • It is always best to lead by example with everything. The best example is your daily application of sunscreen. Put it to yourself first and have them help. Then, it becomes the child’s turn to put it on themselves, or you do it for them. This can be done while facing your child, or from behind. Consider doing it in front of the mirror together. This way they see that you do it too and learn to do it themselves. Consider making this a habit that occurs every day after brushing teeth.
  • As children get older, teach them to know their own medical history. In addition to knowing and understanding Gorlin syndrome, they should know if they have any allergies to medications and what pills (with frequency and dosage) they take and why. If a child had a number of hospital admissions and/or surgical procedures, keep a log of this including the date and procedure. Share it with the teen as they get older, so you and they can also share it with their physician(s).
  • For those in their late teens and early twenties, make sure that they have all the contact information for their physicians. If they move away, help them with a contact list of physicians in their area from whom they should seek care in the same manner they did at home.

The transition from pediatric care to adult medicine physician(s) can be stressful. Talk to your pediatric physicians about how long they will treat your child, and who they might recommend once they have outgrown their care. You might want to consider attending the first appointments with new physicians to help with the transition and make sure that your late teen / young adult is comfortable. Remember, just because your pediatric doctor may have suggested someone, does not mean that you are obligated to use them.
At the age of 18 years, children legally become adults responsible for their own health care needs. Doctors can no longer share information with the parents unless their child signs paperwork allowing the medical professional to do so. This is still enforced even if your child is still covered under your family health insurance plan and you are paying their medical bills. It’s still a good idea to be there as supporters, caregivers, and provide reminders of what needs to be done or should be happening —making the appropriate appointments, purchasing the necessary sun protective gear and screens, prescriptions, reminding the teen to apply their sunscreen…
As your child grows, it’s important to have open communication, provide consistent information, offer tools for success, and lead by example. Your diligence will pay off and you’ll feel confident that your child is prepared to care for themselves in adulthood.
For additional resources in this area, the web sites below may be helpful:
www.kidshealth.org
www.gottransition.org