new member, child in U.K

jsdj.lees(AT)zetnet.co.uk
Wed, 3 Jun 1998 21:52:08 +0000

Hello,
My name is Jane and my son Daniel was diagnosed with acute T.M. on
16th August 1997, then aged 3 and 10 months. He was completely
paralysed below T10, which meant that he couldn't even sit up, let
alone move his legs. On 8th September he moved his toes very slightly
for the first time and from then on have continued to improve. He can
now walk unaided, however he falls constantly and relies on the
muscles in the front of his legs and 'fixes' on his hips. He gets
tired easily, but is extremely determined. The neurologist said that
he thought his recovery was around 60 - 70%, when we saw him
recently.His left side is considerably worse and he drags his left
leg when he walks.He wears splints and special shoes with protective
fronts, to ensure that they last more than a week! He is still
doubly incontinent, although he does have some sensation. The
recovery has now slowed down to the extent that improvements are hard
to see. The consultant told us that by about 1 year we will know what
he will be like, but I understand that people still continue to
recovery over considerably longer periods. The consultant has also
told us that he will now be unlikely to make a full recovery and will
have motor problems,although for some, unexplained reason he is
hopeful about his incontinence.

We would like to hear from anyone who has experience with young
children and TM, anyone in the U.K, especially near Yorkshire. Also
suggestions around toilet training (or not) and whether to try to
promote 'normal' walking or to let him get from a to b as fast as
humanly possibly never mind the style, (which is what happens at the
moment! Also, of course, anything that gives us some hope for his
future.

Thanks