Friday, September 4, 2009

Just don't know any more

Since the end of May our little lad has been off. Everytime we could put it down to someting like ears, tempature, puking etc. Then we added a new medication Banzel and the symptoms continued. Got chewed out by Susan over not letting them know he was puking so they reduced his Banzel but his symptoms continued. We had changed his Keto diet receipy and thought maybe he just wasn't handling the incerase so we put him back on the other receipy but still the symptoms continue. Nothing shows in his blood work only the stuff that is normally a little off so the peds doesn't know what to tell me.
Then the other night he woke up screaming in pure terror like as if Freddy Cruger was after him but within 2 minutes it stopped abruptly and he went back to sleep. He did the same thing the following night at nearly the same time. So last night I sat armed with the camera so I could show the docs what he was doing but wouldn't you know he didn't do it. But guess what he did today yup you guess it he is puking again. So now the thing is is this puking seizure related which I think so but I am not a medical professional and do I think his screaming was seizure related and not a night terror yes I do but how do I get the docs to listen to me as a mother of a child with problems and not a parnoid idiot. Well I will see about getting him in for an overnight stay hooked up to an EEG and I will also push for a new MRI to see if there are changes in his brain. From the amount of seizures he has been having it has bound to have caused more damage.
I have said it before SEIZURES SUCK but I feel so bad for Finnian he cannot tell me what he is feeling but at the same time I don't know if I want to know how it affects him when he is having them its bad enough to watch him going throuhg the motions. It is trully heart breaking to watch and always in the back of your mind you are praying its not going to take him.
My job is to make him as comfortable as possible, to make him enjoy the life he has, to make him take the horrible meds with all the side effects to hopefully keep thoese nasty seizures at bay, To mke him fight as much as possible because als long as he fights we will fight. But the main thing is we love him for who he is our son Finnian..

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