Struggling With No Diagnosis

In comparison to others I feel like we are very lucky.

My daughter has had a host of problems since birth. She spent the first 2 years of her life not really 'with it'. She didn't open her eyes fully until she was 3 months old, she cried all the time, didn't like being held.

Age 4 she was diagnosed with a floppy bladder and had to self catheterise from 9 yrs old. She has learning difficulties (language, communication, dyslexia). She also has severe over pronation of her feet.

We have been referred for genetic testing but it appears it may be something rare. My daughter is now 15! She is desperate for help as are we. There is nowhere to go to as she doesn't have a diagnosis.

We just feel so alone :-(
Torsie1000 Torsie1000
31-35, F
1 Response Sep 16, 2012

Please check out www .undiagnosed-usa.org. Your not alone my daughter is 16 we have been in a very similiar situation. She also didn't open her eyes for a long time. You can find my contact info at that website.