Today Solstice got a feeding tube, as she hasn't been well enough to sit up or consume food in over five days.
She lost her vision for a while yesterday, feeling in one of her legs. Neuro came up, looked at her records and didn't even look at her before they decided it was a pych issue. It's happened before, and I've had her tested at an ophthalmologist. He is sure it is not in her eyes, and the family doctor believes it to be related to the HAE.
Though it is very rare, I found a study yesterday from Switzerland that showed that in very rare cases HAE sufferers can have swelling in the head, causing paralysis, seizures, and stroke. I guess my doctor spoke with my allergist and she assured her that it is not a norm for HAE, so they refuse to help.
I called the Neurologist this morning myself, and said it has to come from the doctor.
So I went to the family consult room and cried for an hour, it calmed me down a bit, but I still asked Greg to meet with the doctor, as I know if I do, I'll go off on her. I'm not holding it together so well these days.
Greg just returned, from the conference with the doctor, he stated that it felt as though they were just keeping her alive. She said yes, you need to be somewhere else and seemed surprised that no one is advocating for us. She is on the case, and hopefully the social worker will find a way for us to get somewhere that can help her. I hope that someone can help us.
Amanda Jensen
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