THE SKIN
Your child's doctor will probably bring up papillomata - wartlike skin growths, because they are in the literature. These may start to show on your child starting at age 2, or they may never show up. Doctors do recommend that any skin eruption be tested to distinguish between papillomata, which can be benign tumors, and wart-like 'lesions.' (see Van Eeghen article quoted at the beginning of this booklet and cited at the end.)
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| Some children suffer from Acanthosis Nigricans, the darkening of the skin. Dermatologists' treatments for this appear to work fine, for the most part. Itchy skin, from mild to extreme, is also a common problem. |
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A FEW OTHER THINGS
Many parents also talk about trouble with stuffy and/or runny noses. 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, after this surgery - but not all.
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Some kids also have tracheal and/or laryngeal malacia (floppiness with each breath), for which a small number of kids needed a tracheostomy. |
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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.
We've noticed that a good number of our kids 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 anesthe-siologist's help. One parent was alerted by a very observant anesthesiologist, who not only gave a copy of his report to her, proving how her child had needed more anesthesia, but he also instructed her to be vigilant with each future anesthesiologist her child needed. |
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SEIZURES? |
There appear to be increasing numbers of newly diagnosed children with seizures -- but we don't have enough data to link it to Costello syndrome. This may be something that's showing up in addition to the Costello syndrome issue. One child had seizures that went away when surgery was done on her Chiari malformation (a deformity in the brain) -- which, prior to the surgery, wasn't clearly the source of the seizure. If more parents report on this issue, we will have better information from which to prove or disprove a link! |
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