Posted by linda crawford on November 30, 1999 at 14:01:57:
In Reply to: Re: Larson's Syndrome posted by Joy Weeks on November 11, 1999 at 07:33:01:
hello, my daughter, chelsea was diagnosed with larson's syndrome 8 years ago. she had no apparent problems when she was born but sufferes several nursemaid's elbows [partial dislocation of the elbow]. she didnot sit independantly until she was over eight months old and could only sit herself up by lying on her stomach and pulling her legs forward and sitting up. our family doctor watched her do this and incorrectly diagnosed her with a disease called ellors-danlose[sp?]. he said it was fatal and she would not survive toddlerhood. this is when she was i year old. we took her to a genetic specialist, who when we walked into his office, looked at my husband and said "you have larson's syndrome' he could tell by the shape of his thumbs, when he holds his thumb up it bends backward and he also has a wider space than usual between his thumb and finger. Chelsea did not walk until she was 19 months old. as she grew, she ran very loosely, legs flying everywhere. she is now 8 and a half and her joints have tightened up and she walks and runs "normally". She could read at age 3 and in kindergarten could read 5th grade level.Our concern now is her hearing. the genetic expert in Burlington,vt told us that hearing loss could be a part of larson's but people had it in different degrees. my husband is 46 and has lost almost all his hearing and has constant ringing in his ears. chelsea started complaining of ringing in her ears a couple of weeks ago and we have an appointment with a specialist but he has to look up larson's because he is not familiar with it! life with larson's can be normal! good luck. linda