Saturday, 1 March 2014

The four stages of Rett Syndrome


When you read about Rett syndrome, a Rett girl's lifetime is typically split into four stages. You can click here to read about them.  

Jessica had her main regression when she was roughly between 18 months and 2 years old- you can read about her regression here.

Given this, we assumed that she had entered stage 3 of Rett syndrome, where there is a period of stability and development, and indeed this has appeared to be the case over the last 2 years.

However, the other day I contacted the amazing team at Rett UK, to ask if they had any thoughts or advice on the numerous complications we have suddenly found ourselves trying to deal with- both regarding Jessica's health and the issues around respite etc.

They suggested that there can be an overlap between the different stages of Rett Syndrome. This could mean that Jess has not fully left stage 2, the stage of regression, and that she is still experiencing Rett changes that her body (and us!) need to adapt to.

This could explain all the different health issues Jess has been experiencing in the last few months and why so many different body systems are suddenly changing how they function all at once, when on the face it there is no obvious connection.

This is both reassuring and scary at once. Reassuring that there could be a reason for all the seemingly random developments of late, and also that hopefully this won't continue forever and that stage 3 period of stability will arrive.

Scary because we don't know what else Rett Syndrome is going to throw at us, and for how long all these dramatic changes are going to keep on going on.

Bring on stage 3.

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