The past:
Sadie has had 2 EEG's (which is a test to check the brain waves) since she has been born. The first was in her first few days of life and the second was sometime over the past summer (I'm going to guess she was about 9 mo old or so). Neither one really showed anything except that she had slow brain waves in parts of her brain. That was no surprise since she has a brain malformation. Everyone was pleasantly surprised with the results because there was question on if she was having infantile spasm
The present:
First thing in the morning the tech came in to do an EEG. Sadie has not had anymore seizures since that high fever and since we started the seizure medication. That evening the neurologist came in to discuss the results. First we talked about the 3 different types of "episodes" that I saw. Then we discussed everything about her: development, personalty, movements, milestones, her life so far, and all of her different diagnoses. After all that he told me the results. The EEG showed changes from her last 2 EEG's. It does not mean that she has had a seizure, but it does not mean that she has not had a seizure. It just means the potential for seizures is greater then it was in the past. Where the EEG showed changes is in the midline of her brain (which does not surprise me at all because that is where all of her issues are throughout her whole body). So what do we do with this new info? His suggestion... "given her brain malformation, the episodes that you have told me about, and the changes on her EEG, I suggest we put her on a permanent seizure med." We discussed the risks and benefits and some of my concerns. In the end, I just was not convinced that this is what she needs. I have learned from being a nurse and from being Sadie's mom that Dr's guess (a lot) when it comes to her. She is not a textbook case at all. So this was the agreement that we came up with... While she was in the hospital she will stay on the seizure med and for a week after discharge she will be on the med and then we will wean it for a couple of days and then she will be off of it. After that it will be watching her for signs of seizures. If she is healthy and she has an episode she will be put back on the med. If she does not have another episode then good, we made the right choice. The Dr did say that there was a possibility that she might only have seizures while she is sick, fever or not, it might just be the way her body reacts to illness.
As always it is a guessing game when it comes to Sadie. I truly hope that I am right that the seizures are only because she was sick, but as always we will just wait and see. The story of her life!
to be continued...
Sadie has had 2 EEG's (which is a test to check the brain waves) since she has been born. The first was in her first few days of life and the second was sometime over the past summer (I'm going to guess she was about 9 mo old or so). Neither one really showed anything except that she had slow brain waves in parts of her brain. That was no surprise since she has a brain malformation. Everyone was pleasantly surprised with the results because there was question on if she was having infantile spasm
The present:
First thing in the morning the tech came in to do an EEG. Sadie has not had anymore seizures since that high fever and since we started the seizure medication. That evening the neurologist came in to discuss the results. First we talked about the 3 different types of "episodes" that I saw. Then we discussed everything about her: development, personalty, movements, milestones, her life so far, and all of her different diagnoses. After all that he told me the results. The EEG showed changes from her last 2 EEG's. It does not mean that she has had a seizure, but it does not mean that she has not had a seizure. It just means the potential for seizures is greater then it was in the past. Where the EEG showed changes is in the midline of her brain (which does not surprise me at all because that is where all of her issues are throughout her whole body). So what do we do with this new info? His suggestion... "given her brain malformation, the episodes that you have told me about, and the changes on her EEG, I suggest we put her on a permanent seizure med." We discussed the risks and benefits and some of my concerns. In the end, I just was not convinced that this is what she needs. I have learned from being a nurse and from being Sadie's mom that Dr's guess (a lot) when it comes to her. She is not a textbook case at all. So this was the agreement that we came up with... While she was in the hospital she will stay on the seizure med and for a week after discharge she will be on the med and then we will wean it for a couple of days and then she will be off of it. After that it will be watching her for signs of seizures. If she is healthy and she has an episode she will be put back on the med. If she does not have another episode then good, we made the right choice. The Dr did say that there was a possibility that she might only have seizures while she is sick, fever or not, it might just be the way her body reacts to illness.
As always it is a guessing game when it comes to Sadie. I truly hope that I am right that the seizures are only because she was sick, but as always we will just wait and see. The story of her life!
to be continued...
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