What happens now?

Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.

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Emmy4882
Posts: 1
Joined: Tue Mar 13, 2018 6:46 pm

What happens now?

Postby Emmy4882 » Tue Mar 13, 2018 6:57 pm

My daughter is 10. She has a severe brain injury, which she sustained at 3 months of age. She doesn't "technically" have CP, but since she was so young at injury, they classify her as this and she is very similar to a very severe case of CP.
As the years have gone on, her spasms have gotten worse and her little body gets more and more twisted and deformed. We manage it the best we can, but it just keeps getting worse. She can't take baclofen, we have tried twice, resulting in basically overdosing both times, even with a very small dose.

What happens now? I saw a story once about someone similar who ended up having to be put on pain medication and then requiring such high doses that any quality of life was gone, so they put him on hospice and basically stopped feeding him until he passed. Ever since seeing this year's ago, it seems like that will happen with her and it terrifies me beyond belief. Is this where we are headed? Is this where most people like my daughter end up? Please share some experiences with me for severe cases and pain.