Ectopia Lentis in 3 yr. old son

[JRoz222]

Our 3 year old son has been diagnosed with ectopia lentis in both eyes likely due to a connective tissue disorder.   He has been wearing glasses but the doctor now suggests removal of the lenses starting with his left eye.  It is unlikely that he will tolerate a contact lens at this age.  Is this too early an age for removal?  We were hoping that his vision could be corrected with glasses until his eyes fully developed.  Is there a risk of waiting? Is there a risk associated with removal at this age?

[JohnHaganMD]

He likely has Marfan's Syndrome. It is a very complicated surgery and usually requires the cooperation of a retina surgeon and a cataract surgeon. Problem with waiting is the eyes may not develop properly and get reduced vision (amblyopia)  This is often done best in university medical center with pediatric anesthesia and pediatric ophthalmologists.  

[JRoz222]

Thanks.  Our Genetics testing couldn't state conclusively that he has Marfan;s Syndrome but he has a variant in the gene that affects connective tissue that has never been seen or documented before so they are going to treat him as if he has it.  We were just wondering what the research says about young children and their tolerance or acceptance of a contact lens is.  We don't think he will allow us to insert it.