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(01-03-2010, 08:33 PM)jacknchloesmum Wrote: well if they contact our docs will be fine i think,she as so many problems but she as surprised them all with walking , plus we put our nurses name down ,she usually signs it anyway i will start making notes tomorrow!
daniel, lucy does your little boy walk?

His condition basically means he loses all his body salts,hes on 10 meds a day now to try and counter act this.
But because of his salts being lost he developed ricketts and this caused deformaties in his legs and hips.
So although he can walk,he cannot walk far or without tripping up or without pain later in the day.
The reason i said keep the diary was that it is easy to forget how much extra you actually do because it becomes the norm!!
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Thank you a bunch for sharing this with all people you actually know what you are talking approximately! Bookmarked. free brain games

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