Acadia, page-437

I'd hazard a guess and suggest some parents of Retts patients are still finding their feet so to speak with the drug i.e. how to manage dosing/side effects/waiting for the benefits-improvements to materialise.

Following Mel and Katelyn's progress it appears Mel was experiencing some frustration at first with the drug (from memory she was at one time working out optimal dosing I believe, also some frustration coming through from Mel about the rate of improvement as well). I think this is a common incidence amongst parents where the benefits may take some time to materialise, but from Mel's last post there seems to be a marked improvement In Katelyn's response to the drug.

So my read of the drug uptake and discontinuation rates is perhaps some parents didn't initially see the benefits they expected with the drug and because the cost of the drug is relatively high they determined it was not worth it to continue. As experiences of patients and parents/caregivers filters out into the Retts syndrome community those who were sceptical maybe enticed into trying it again and giving it a second go.

To be clear I don think the above is a primary reason for any perceived elevation of discontinuation rates, it's a very broad assumption. But its just something I've been thinking about recently after reading different patient experiences.