Incontinentia Pigmenti Community
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This patient support community is for discussions relating to incontinentia pigmenti, genetics, and breast, dental, eye, hair, nail, nervous system and skin problems.

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Specialists

My nerves are about shot after going to see several specialist and being told very little. My daughter( 18 months) has a MRI scheduled in Dec. but the only thing the doctors will tell me is that the tests are for a baseline. I feel that she is being used as a guinea pig because of how rare this condition is. How do I decide where to draw the line??

Stressed out in Alabama
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i feel for you we are at the begining our baby is only 4 weeks old i think you should draw the line when you want i am a big on mothers instinct if there is no problem and the doctors are just experimenting you should definently protect your little one just out of curiosity what is a baseline?
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Avatar_f_tn
this forum is for IP only.  It would be appropriate for you ask you pediatrician why he is **** the tests.  If he suspects IP, then the baby should have a genetic test.  
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You need to talk with a genetics dr that specializes in IP(Like Virginia Sybert at University of Washington State) from their if baby is diagnosed with IP, she will send you to the best neurologist and opthamologist to make sure there is no immediate problems.  Your right, especially at places like childrens hospital where there are residents....you have to be careful....they want to experiment..do skin biopsies and write papers because it is a rare disease.
Any genetics dr. that specializes in this disease does not have to do skin biopsies and put your child in more pain than they already are to diagnose this disease.
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