A FEW OTHER THINGS
Many parents also talk about trouble with stuffy and/or runny noses, which even something as minor as a cold can fill a tummy with mucus, causing increased vomiting. Combinations of over-the-counter medications mostly help. Those who have had tonsillectomy and/or adenoidectomy surgery do better. Several children who didn’t sleep well did, better after this surgery – but not all. Some children also have tracheal and/or laryngeal malacia (floppiness with each breath), for which a small number of children needed a tracheostomy. The good news is that they appear to grow out of it. One child who had a trach (tracheotomy) grew out of the need for it in a couple of years.
Our children need more calories too.
We’ve noticed that a good number of our children metabolize pain medications very quickly. Be sure that you tell your child’s doctors so that pain management can be more effective. If your child needs surgery, be sure to enlist the anaesthesiologist’s help. One parent was alerted by a very observant anaesthesiologist, who not only gave a copy of his report to her, proving how her child had needed more anaesthesia, but he also instructed her to be vigilant with each future anaesthesiologist her child
YOU ARE THE EXPERT ON YOUR CHILD
Be prepared to be the one who knows the most about your child, and the key person for 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! Because of the complexity of multiple issues, your child needs to be seen by the best in each field – if possible.
Some parents have found that a specialist who is able to say “I don’t know” is someone confident enough to recognize his or her limitations – that doctor is being honest with you. The odds of their having treated another child with CS are really low. 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.
Please 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! Or find us on Facebook.
With this new way of thinking about Costello syndrome and the other syndromes on the Ras Pathway, a number of possibilities for treatment can be considered! This pathway is known by cancer and other researchers. It could be that an existing medication could help cure our children of the worst effects! Incredible work is being done internationally on our children’ syndrome. Members of our Professional Advisory Committee 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. Remember that your child shares your genes - and has needs and responses like any other child. Not everything can be “blamed” on the syndrome. While they have incredibly challenging issues, our children are wonderful sons and daughters