Genetics Community
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514428 tn?1287598456

Does it sound like my 4 year old daughter has Marfan's?

Since she was born, she constantly held her thumb in her fist, so tight at times, I couldn't really break her from it until she was about 2 years old.  She's just started school this year and she doesn't talk as well as we'd like, so we had a speech theropist come out and check on her (said she'd out grow it), but she noted my daughter was "disabled" because she can't grasp a pencil or scirrors right and she has problems with motor "vision"?  EVERYTHING I was reading about MArfan's totally discribes my daughter to a T!!  

She has....
*Flat narrow feet (quite long)
*VERY long fingers
*A dip in her chest
*very flexable more in her hands
*Muscle weakness in hands (can't grip pencils correctly)
*The roof of her mouth always was high but narrow and had a very hard time bf'ing her because her teeth would cut into my nipple...
*Thin and tall with long arms and legs

She's only seen a doctor a few times, butthe doctors we see are very fast during visits because she's a twin.  The other twin is perfectly normal.  She talks, does very well in school and doesn't have anything wrong with her hands or vision.  

I'm just wondering what else this could be. Every other tissue disorder NEVER mentions what she has (vision and grasping issues) and then for the school to say she was disabled really ticked me off.  I'm just trying to find answers and I don't want to look crazy if I took her to the doctors to figure this out and them tell me "nothings wrong".  Obviously something is wrong is she's "disabled"...
1 Responses
395787 tn?1298428787
hi, my name lisa,i have a daughter with an extremely rare genetic syndrome of only 15 in the world. i havent responded tho to tell you about me,i guess im just replying firstly to say i know what your going through, not for one minute do i think there is a problem with your daughter but i can totally appreciate the feeling of you not knowing and searching for answers. what i find actually quite mad is that you have made doctors aware of your feelings and they seem to of been brushed aside. yet you yourself have continued to look for answers.that is a mothers instinct. doctors are most definitely not always right. a mothers instinct is.even if it turns out to be something so trivia.which the majority of concerns is as a parent. if one doctor cant tell you and your not happy.demand to see another.and another for as long as it takes till your referred to the correct specialist. i hope you find the answers your looking for and wish you well
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