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 Lewis - undiagnosed

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SJeynes
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Number of posts : 48
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Registration date : 2008-03-27

PostSubject: Lewis - undiagnosed   Fri Mar 28, 2008 4:36 am

Hello again, so far Lewis is undiagnosed, but we have had a really good experience (so far) with neurologists, metabolists, geneticists, etc trying to find a diagnosis for him.

We finally saw the world expert in paediatric neurological conditions at GOSH in April 2006 and he couldnt help (everybody we spoke to said you must see Professor Surtees - even medical professionals we approached abroad). Sadly, Professor Surtees died in August 2006 so not only can we not tap into his vast experiences for a second time, but other families who might have had some hope (as we did) will miss out. Very sad.

I am actually happier nowadays with no diagnosis, as with Lewis being how he is (a complete mystery) nobody can say what the future holds which means we can have hope. Its taken me a year to get to this point though! Take each day as it comes!
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Debbie Lou
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PostSubject: Re: Lewis - undiagnosed   Fri Mar 28, 2008 5:14 am

I think he is gorgeous and i suppose all you can do is take every day as it comes.

Do you get much support?
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SJeynes
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Number of posts : 48
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PostSubject: Re: Lewis - undiagnosed   Fri Mar 28, 2008 5:41 am

thats weird, I thought I'd done a reply, then I went out of the room for a minute and when I came back it had gone lol! So I'll start again!

We do get loads of support, too much probably but its a case of dont refuse it as they might not offer it again!

So we get 5 hours a week from the hospice (which will reduce when Lew goes back to school after the Easter holidays), he gets 14 hours a week direct payments, and then I dont go to work so I do the rest of his care. Before Easter he was going to school 2 days a week, but after Easter he'll go back 3 days a week so I am thinking of doing some kind of voluntary work where I can run out at a minutes notice if necessary (hence I cant have a 'proper' job for that reason).

The only problem I have with a lack of support is physiotherapy. Lew needs regular physio and I am very un-impressed with the way this service is being offered to us. Lew has a review every 2 months (if they remember) and they do a few paltry exercises with him and thats it until next time. In between, I am supposed to do the exercises he needs to keep him in the best condition possible, but I'm not a trained physio and I dont feel comfortable doing them they way they should be done, in case I do something wrong!

But, we are sooo lucky at the moment as Lewis' physio at the hospital as left and now does private care so we have her as our direct payments support and she does physio for Lew 3 times a week. What makes me so mad, is the other parents who havent been as lucky as we are, who's children are not getting a proper physio service. Grrr, sorry I rant about it!!!

I need to go and catch up with everybody else's stories now so I know who I'm talking to!

Samantha x
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Debbie Lou
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PostSubject: Re: Lewis - undiagnosed   Fri Mar 28, 2008 5:52 am

Thats good then x
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