My daughter is 6 1/2 mo old. And she is a pure mystery. Not one Dr can tell us what is going on with her. I'm not big on labels, and would rather her not be labeled. However, I also want to have some idea on what to expect for her future and how to help her with what she has going on now. This is what she has going on...
She has/was IUGR, pontocerebeller hypoplasia, shortened corpus collasum, ASD, and many cranial nerve issues. I've read about IUGR, PCH, ASD and the corpus collusum. Where my problem is coming in is with the cranial nerve issues. She has 11 Dr's currently for all of her issues and every single one of them has mentioned one of her cranial nerves. So she has issues with all 12 cranial nerves. For all those who are not familiar with what the cranial nerves do, here is a short list of some of her issues. She is deaf, has a right side facial weakness, has eye issues where they don't turn all the way laterally, she has no feeling in her eyes (you can touch her eyes and wash them with saline and she doesn't even flinch), she doesn't blink appropriately, we do not think she can smell, we don't think she can feel her tongue (as she has bit/gummed it so hard she made it bleed and never even cried), she is hourse (you can barely hear her cry), trouble sucking. I think thats a majority of her big issues.
She sounds alot worse on paper then she is in person. I mean, yes she has all that going on, but she acts just like a normal little baby (for the most part). She is a little developmentally behind, but she is hitting milestones, just at her own pace.
I just want a Dr to pay attention to these cranial nerves and no one seems to care about them. They all say yes she has issues with them, but no one will look into see why and if they can be fixed someway. And I've excepted this answer until recently, when I've read others questions, journals, comments about thier cranial nerve issues. Plus, I am also starting to wonder if a nerve in her face hurts because she is always grabbing, pinching, and pulling at her eye/cheek off and on her whole life and she sometimes develops a rash on that cheek. She doesn't cry with the rash or pulling, so I'm not sure if it's painful (it's just a guess). So now I am on the hunt for a neurologist that works a lot with cranial nerves and won't blow me off. I guess my question for all of you is do you, your child, or a loved one have any issues with any of these things? Sometimes I feel like I keep searching and getting no where.