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Here some suggested organisations that offer expert advice on SN.

been to Nottingham for our appointment

(3 Posts)
catfourbabies Sat 08-Nov-14 19:18:27

Finally got to the genetic specialist yesterday. My ten year old had a derby eye appointment on tues so his notes hadn't been passed over which to me isn't good enough. Anyway she seemed pretty stumped to be honest. She is reasonably happy it isnt marfan or any of the main ehlers danlos syndrome. She thinks maybe something called stickler syndrome.

She agreed to repeat the heart scan which our derby consultant refused as apparently 'nothing in the body changes' whatever. His last one was at six years old. Sometimes children can have a floppy valve with this condition.

We may need to be seen at a hospital in Cambridge! To get a examination of the eyes as even our brilliant hospital consultant cant detect them.

She is going to have a think about stickler and presume get back to us. Hopefully the heart scan will be at derby.

Rockclimbingtigger Sun 09-Nov-14 22:50:26

Can I ask who you saw at Nottingham? We've been referred to genetics - a dr Suri?

Sorry to high jack your thread and I hope you find some answers x

catfourbabies Mon 10-Nov-14 17:15:07

Hi we saw dr Harrison. Have you been before? We are spoilt at Derby with wide bright play areas. I waz surprised at Nottingham sitting in a tiny corridor with some broken toys and snotty reception staff

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