Sorry this is very long!
My daughter is 10 months old. When she was born they used the vacuum and she spent 8 days in the NICU because of the swelling on her head they thought she had a subgaleal (sp?) hemorrage. She was not premature. It ended up not being this but they did find that her left ventricle is slightly larger (they think this may be due to some damage or lack of oxygen in utero but don't think it will effect her-noone really knows yet) she also has some lack of white matter on this same area.
We also found out in the NICU that she is severe-profoundly deaf bilaterally. She has had hearing aids since 3 months and they do not help her at all. We are scheduled for a consultation for CI but still have not met with them yet.
She also has MANY developmental delays. She has been in physical therapy since she was 5 months old and recently started occupational therapy as well. She cannot sit up on her own, will not put any weight on her legs and therefore cannot even stand, refuses to put weight on her arms during tummy time so she does not even push herself up and just really got the rolling down thing over. So gross motor skills are FAR behind, while fine motor skills are about average.
She also has vision issues. Her left eye is lazy, it also is a cross eye, and she has nystagmus which they think is from spasmus nutans (no seizures-eeg came back normal). However it is not a typical lazy eye or cross eye because the eyelid does not move at all. She rarely blinks this eye-but she can close it and does blink on occasion.
Lately she has been showing some signs that I don't know are consistant with deaf babies or if she may have something like autism? She is more content playing by herself than anything else. Absolutely obsessed with her hands. She scratches EVERYTHING. When one hand makes a movement or bangs a toy the other hand does the mirror image of it even though it is not touching anything. She always bangs her toys on her head and lately does not make hardly any eye contact.
We have seen 3 opthamologists, neurologists, pediatrcians, geneticist, therapists, ect. and NOBODY can tell us ANYTHING!
It is really frustrating trying to figure out how to help her best when we don't know what is wrong. Does this sound familiar to ANYONE out there? We were thinking maybe Wildervanck syndrome but when we asked about it to the geneticist she said it might be a possibility but it still doesn't explain her developmental delay.
ANYTHING you can say will help me. thank you so much!
My daughter is 10 months old. When she was born they used the vacuum and she spent 8 days in the NICU because of the swelling on her head they thought she had a subgaleal (sp?) hemorrage. She was not premature. It ended up not being this but they did find that her left ventricle is slightly larger (they think this may be due to some damage or lack of oxygen in utero but don't think it will effect her-noone really knows yet) she also has some lack of white matter on this same area.
We also found out in the NICU that she is severe-profoundly deaf bilaterally. She has had hearing aids since 3 months and they do not help her at all. We are scheduled for a consultation for CI but still have not met with them yet.
She also has MANY developmental delays. She has been in physical therapy since she was 5 months old and recently started occupational therapy as well. She cannot sit up on her own, will not put any weight on her legs and therefore cannot even stand, refuses to put weight on her arms during tummy time so she does not even push herself up and just really got the rolling down thing over. So gross motor skills are FAR behind, while fine motor skills are about average.
She also has vision issues. Her left eye is lazy, it also is a cross eye, and she has nystagmus which they think is from spasmus nutans (no seizures-eeg came back normal). However it is not a typical lazy eye or cross eye because the eyelid does not move at all. She rarely blinks this eye-but she can close it and does blink on occasion.
Lately she has been showing some signs that I don't know are consistant with deaf babies or if she may have something like autism? She is more content playing by herself than anything else. Absolutely obsessed with her hands. She scratches EVERYTHING. When one hand makes a movement or bangs a toy the other hand does the mirror image of it even though it is not touching anything. She always bangs her toys on her head and lately does not make hardly any eye contact.
We have seen 3 opthamologists, neurologists, pediatrcians, geneticist, therapists, ect. and NOBODY can tell us ANYTHING!
It is really frustrating trying to figure out how to help her best when we don't know what is wrong. Does this sound familiar to ANYONE out there? We were thinking maybe Wildervanck syndrome but when we asked about it to the geneticist she said it might be a possibility but it still doesn't explain her developmental delay.
ANYTHING you can say will help me. thank you so much!
