Thursday, 8 January 2009

A full diagnosis

apologies for not updating sooner...we were struck down by this awful flu bug and so wiped out for Christmas and only just feeling 'back to normal'

Anyway we saw Seraphinas new Neurologist at Birmingham Childrens hospital on Monday to get a more in depth diagnosis etc rather than the 'we think she has cerebral palsy'.Was really hoping that they were wrong to be honest. Anyway,Neuro was lovely and took lots of time to examine her and then called in another consultant (so we knew then news wasnt good) anyway to cut a long story short she has been formally diagnosed with Spastic diplegic Cerebral palsy with left Hemiparesis and severe progressive microcephaly. from what I can understand from that her legs are worse than her arms (although her arms are affected) and her left side is worse than her right,also her head growth is next to nothing (1cm in the last 12 months) which is suggestive (their words not mine) of severe mental retardation. We are going to be admitted for overnight EEG as he suspects that some of her sleep problems are due to seizure activity and she will also have a normal awake EEG.oh, also got to have urgent hearing test and speech and language input as she is communicating very little so he is concerned about that.She also needs to have botox in the back of her legs. He doesnt think she can hear properly and we already know her sight is poor.He didnt think another MRI pr CT was worth it as its already known she has enlarged cystic right ventricle and PVL,siad it would be putting her through another GA for nothing really.anyway,I kinda feel like I've been hit round the head with a breeze block to be totally honest I feel a bit down about all this as he said he was sure she will never be very mentally aware! ..

last few days have passed in a bit of a blur,tried researching food/suppliments that might 'cure' her or stimulate brain growth, contacted Face to find they dont support my area,neither do Contact a family so that blew that one out of the water lol.Would just be nice to sit down and have a chat with someone who has a child like Seraphina.......theres always quetions you think of asking after youve seen the docs and some of them could probably be answered by a parent of a similar child.
This cold snap has really upset Seri,the spasms in her hands have been really bad...yesterday she couldnt move her arms at one point,they just 'locked' at the elbows and her legs went at the same time poor love screamed and screamed.I gave her baclofen and calpol but it took sooooooo long to work.There must be something better to use for there kind of emergencies,seems so cruel to just leave her.Should have asked Neurologist but you always think of these things afterwards and I dont know if I dare phone and leave a message for him :-s,not due to see him again till March.

1 comment:

Fiona said...

I'm Mum to 10 year old boy who has PVL and a whole host of other labels. The last 10 years have been an absolute rollercoaster and while I don't claim to knw all the answers I would like to offer you some support. Please, please feel free to email me if you wish and we can take it from there.

(Fiona AT thelovetts DOT co DOT uk)