Guest guest Posted September 22, 1999 Report Share Posted September 22, 1999 hi friends, i am back in circulation. thx for ur hospitality in houston. again, i have learnt so much from the children and their families. Brownie Shott and her team needs a brownie medal for their sterling effort. a grand slam performance so to speak! i hope Indianapolis can measure up in 2001. There is only one published study from France that addresses trach in children with charge. I have a copy of the whole article. the abstract can be viewed at http://www.websciences.org/cftemplate/NAPS/indiv.cfm?ID=19990577. my personal view is : very few children need trachs - only 2 in Oz that i know of as soon as it is inserted there should be a commmitted effort in a few months to decannulate it is invasive surgery and increases morbidity and mortality it prolongs hospitalisation and adds to burdens of home and respite care it interferes with the acquisition of oral communication my indications would be : a patent and safe airway that cannot be attained by oral suctioning, tracheoplasty for tracheomalalacia, gastrostomy and fundoplication. abnormal larynx which is does not provide protection for lungs from aspiration and infection. I hope this helps. At 10:15 PM 21/09/99 -0600, you wrote: > > >Meg, >I really appreciate your response on this. It is nice to have accurate information. Thanks. > >mom to (7 1/2 mo) CHaRGE > >Meg Hefner wrote: > >> >> >> I checked with the data from (old) questionnaires, >> which I reported at the 1993 St. Louis >> conference. In our survey, we had 19% of children >> had trachs. Kim Blake reported 14% in the UK. >> That very likely reflects the phiosophical >> differences between US and UK. I would also >> expect my survey may be an under-estimate, as most >> parents fill it out when the child is quite young >> and some kids don't get a trach until later. So >> my best exitmate is that, in the US, between 20% >> and 30% of kidds with CHARGE get a trach at some >> point. Lots, but no where near the number quoted >> by the ENT. >> Meg >> >> Meg Hefner MS >> Genetic Counselor >> St. Louis MO >> meg@... >> >> > For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > > >>For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > > L Paediatrician PO Box 248 Menai, Sydney, NSW 2234 Australia Ph +061 02 9543 0222 Fax +061 02 9543 0510 Quote Link to comment Share on other sites More sharing options...
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