We weren't really expecting any news today. Today's appointment was merely a review of how the meds were affecting Hope's seizures. I was slightly worried that there May have been new bombshells- thankfully there weren't !
I told him that I felt we had got the old Hope back and that the seizures were massively reduced (we'd only had 8 teensy seizures at that point compared to the 200 that they had escalated to). He hope's that as we increase the dose H will be seizure free! This is fab news because last time he thought that we may have trouble controlling them. Obviously there are no guarantees though.
Dr Ch went onto give her an examination; he was impressed with her improved tone, her interactions, smiles and protests. He said you wouldn't know to look at her that there was anything wrong. He said last time he saw her he was 'very worried' for her. Before handing her back he gave her a lil kiss on the head. Told you he was a special doctor!
He then went on to give Chris a lesson on the brain and epilepsy. I was pleased he did because I don't think Chris really understands what's happening and why, which really frustrates me because I know so much- bordering on obsessed I suppose, but whenever I try to explain something to him , it feels as though I'm talking to a brick wall. It's not that he doesn't care, he's just not interested in the Ins and outs of it all.
As usual I had my list of various questions to ask. I asked whether the EEG showed patterns of hypsaryhthma (sp?) This would have meant West Syndrome . The EEG didn't but did show chaotic activity. He said it could develop, but the way she's improving and responding to the meds, he hopes that West Syndrome could be kept at bay :0) and that for now, Hope has the 'infantile spasms' variety of epilepsy.
He said that some children like Hope he sees can go on to lead fairly normal lives, but that some have big problems. I am being realistic when I say that I don't think Hope will lead a 'normal' life...I think it's safer to think like that. For me it is. Of course I HOPE I am wrong. I feel Dr Ch is also more hopeful after seeing her today; to think 2 weeks ago he said increased risk of 'spasticidy' and today he's talking about the possibility that we may get these seizures under control and Therefore improve her prognosis dramatically. Like me, he's of the thinking that ' only time will tell' . I like that saying, because to me, it means possibilites. There's HOPE!
I told him that I felt we had got the old Hope back and that the seizures were massively reduced (we'd only had 8 teensy seizures at that point compared to the 200 that they had escalated to). He hope's that as we increase the dose H will be seizure free! This is fab news because last time he thought that we may have trouble controlling them. Obviously there are no guarantees though.
Dr Ch went onto give her an examination; he was impressed with her improved tone, her interactions, smiles and protests. He said you wouldn't know to look at her that there was anything wrong. He said last time he saw her he was 'very worried' for her. Before handing her back he gave her a lil kiss on the head. Told you he was a special doctor!
He then went on to give Chris a lesson on the brain and epilepsy. I was pleased he did because I don't think Chris really understands what's happening and why, which really frustrates me because I know so much- bordering on obsessed I suppose, but whenever I try to explain something to him , it feels as though I'm talking to a brick wall. It's not that he doesn't care, he's just not interested in the Ins and outs of it all.
As usual I had my list of various questions to ask. I asked whether the EEG showed patterns of hypsaryhthma (sp?) This would have meant West Syndrome . The EEG didn't but did show chaotic activity. He said it could develop, but the way she's improving and responding to the meds, he hopes that West Syndrome could be kept at bay :0) and that for now, Hope has the 'infantile spasms' variety of epilepsy.
He said that some children like Hope he sees can go on to lead fairly normal lives, but that some have big problems. I am being realistic when I say that I don't think Hope will lead a 'normal' life...I think it's safer to think like that. For me it is. Of course I HOPE I am wrong. I feel Dr Ch is also more hopeful after seeing her today; to think 2 weeks ago he said increased risk of 'spasticidy' and today he's talking about the possibility that we may get these seizures under control and Therefore improve her prognosis dramatically. Like me, he's of the thinking that ' only time will tell' . I like that saying, because to me, it means possibilites. There's HOPE!
(((((Caroline))))) i'm sooo pleased to read this to hear Hope is doin well and that the seizures have reduced, well done Hope xxxx
ReplyDeleteMy family's prayers are with you.
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