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SN children

Here are some suggested organisations that offer expert advice on special needs.

Anyone know what MPS screening is?

2 replies

used2bthin · 05/08/2011 08:12

DDs geneticist wrote to say now that her eeg indicates epilepsy it is a good idea to test for this and amino acids and other metabolic tests.

Any experience?

She also has SLI, a genetic condition which is metabolic and the geneticist found some unusual features such as small head and shortened neck but nothing that points to anything obvious yet.

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cwtch4967 · 05/08/2011 10:02

My ex had a cousin with two children born with MPS they had Sanpillippo syndrome - one of the many MPS diseases. More is known now than when they were diagnosed over 20 years ago. The MPS society can be a great help mpssociety.co.uk/

Hope this helps x

used2bthin · 05/08/2011 21:04

Thank you, I have been on that site it is very good looks like there is support out there for children with the condition. Is it a routine thing to test for when checking children with neurological issues/learning difficulties do you know?

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