| HANG IN THERE! |
Our children are "globally developmentally delayed," but they generally eventually reach all the childhood milestones. Thank goodness for their "warm, social personalities*"-
when it kicks in (usually after the gastrointestinal issues start getting resolved).
It seems that wherever they go, they endear people to them. And their sense of humor - mature beyond their developmental age - helps us help them through the tough times. Have you noticed? |
Because of the rarity of this syndrome, your child needs to be seen by the best in each field - if possible. Oddly, it's important to hear "I don't know" from the specialists, because it means they're being honest with you. You are building and maintaining a team to support you. You need to be able to trust them with what they know - and don't. |
| A typical child with Costello syndrome may see many doctors, including:- |
- A geneticist
- A gastroenterologist
- A cardiologist
- An orthopedist
- A neuro-ophthalmologist
- A pulmonologist
- An ENT (ear, nose and throat) specialist
- A pediatric dentist specializing in craniofacial deformities
- A neurologist
- A developmental pediatrician
- In addition to the primary pediatrician
Children - people with Costello syndrome are amazingly tough survivors
YOU ARE THE EXPERT ON YOUR CHILD
Be prepared to be the one who knows the most about your child, and the integrator of your child's medical and educational needs.
If you're up to it, ask for copies of all your child's medical reports so that when you visit the next doctor, you have all the information at hand. It makes a big difference! Even if you don't understand them, being able to provide reports to each specialist helps that specialist immensely.
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Remember that YOU are with your child for life, and the specialists are not. Trust your instincts, and do what you can to educate yourself so that you are taken seriously when you meet with the specialists your child will need to visit. If you have access to the internet, join our listserv!
IDEAS: There is a thought from the UK that Costello syndrome has to do with the delayed switching of a genetic developmental code. This makes medical sense with respect to the feeding, cancer, and heart problems.
Incredible research work is being done internationally on our kids' syndrome. Members of our Medical Advisory Board are actively researching and recruiting researchers. Your participation would be greatly appreciated!
In the meantime, treat each of your child's problems based on the specialty of the problem. Don't forget that your child shares your genes and has needs and responses like any other child. Not everything can be "blamed" on the syndrome.
Credits
Photos (credit the parents of): Kelsi Moore, Michael Weber, Shelby Adams, Helaina Stone, Kelsi Moore's hand and foot, Jayne Keizer, Jalisa Sullivan at birth, 3 and 8, and Quin Johnson (in memoriam).
Logo and Brochure written and produced by Lisa Schoyer © 2003 for CostelloKids You are free to copy the brochure without changes for non-commercial use only
Reference
* Van Eeghen et al, American Journal of Medical Genetics, 82:187-193 (1999). This article has an excellent chart of involvements.
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