we could really use your prayer tonight. The neurologist is not at all happy that we want to take Ben off ANY of the meds, let alone all. He says seizures are more dangerous than side effects...He is going to call me tonight to discuss it. I feel very unsure of my position, and this is one of those times that I wish God would speak us loud and clear...and He is silent. The neuro is right-Bens seizures were life threatening off of the meds. He makes a good point! how on earth can we decide? But Ben's rash is still there, and how many times to we risk life threatening allergic reaction? I feel as if I might fly apart tonight. Have I mentioned recently how much I hate this? I hate that Ben is sick, and his personality is so clouded by the meds. We try really hard to be positive, but he is having seizures every 15 minutes or so from 3:00 on every evening, and most of the night. He has lost some of his speech gains, some of his musles in his mouth(can no longer hold food in while he is chewing) and no longer knows how to use a spoon. Seizures, or meds? no way to know. We try and focus on the good things that are happening, but we also have to manage his medical care and make decisions we think are best. Would somebody please tell me what decisions we think are best?
Teena