Sick again
Ryley's health is really puzzling us at the moment.
This is part of the reason why I jumped at the chance to see his neuro team earlier than I am meant to be.
I am assuming that his increase in seizures and constant vomiting has something to do with the Ketogenic Diet, but then again, I am not entirely convinced that is all it is.
I think I know in my heart of hearts that we are probably going to have to come off the KD and see what happens. He has been on it now for nearly two years and I think either we make some adjustments to the diet itself (like increase the ratio) or we start thinking about alternatives.
He is actually in bed asleep at the moment. He vomited at school so I went and got him. He is ok, but I just knew he needed sleep. I just wish I knew why he was vomiting all the time. Maybe his reflux meds need to be increased again. I don't think it is that though.
Sometimes it is hard not to look at Ryley and just see his health issues. Mainly because I can't figure them out. And that is driving me crazy. I want to make things better for him. I should be able to. But I can't.
Sigh.
So at least we see his team of specialists in a few weeks. We are having a holiday at the hospital. We get to stay overnight and all. Woot.
This is part of the reason why I jumped at the chance to see his neuro team earlier than I am meant to be.
I am assuming that his increase in seizures and constant vomiting has something to do with the Ketogenic Diet, but then again, I am not entirely convinced that is all it is.
I think I know in my heart of hearts that we are probably going to have to come off the KD and see what happens. He has been on it now for nearly two years and I think either we make some adjustments to the diet itself (like increase the ratio) or we start thinking about alternatives.
He is actually in bed asleep at the moment. He vomited at school so I went and got him. He is ok, but I just knew he needed sleep. I just wish I knew why he was vomiting all the time. Maybe his reflux meds need to be increased again. I don't think it is that though.
Sometimes it is hard not to look at Ryley and just see his health issues. Mainly because I can't figure them out. And that is driving me crazy. I want to make things better for him. I should be able to. But I can't.
Sigh.
So at least we see his team of specialists in a few weeks. We are having a holiday at the hospital. We get to stay overnight and all. Woot.
Oh Anna, I hate to hear that Ryley is not well again... its a horrible feeling when all you see is them sick, and yes you want to make it all better... Heres hopeing that you get some answers when you see his specialists in a few weeks. If you have time to meet for a coffee, let me know. I am happy to come to the hospital and meet you... let me know xxx
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ReplyDeleteI hope he is feeling better today and that you can figure out what is going on.
ReplyDeleteHey Anna,
ReplyDeleteHope you are ok.
I'm thinking of you. Best of luck at the RCH and to finding some solutions to improve things, big hugs to Ryley.
Jen.