Hi can now answer both the previous posts,
At our first apt we were seen by both the physio and rheumatologist. The physio gave jr a complete examination and assement and prescribed a home exercise program. Our next trip up will be for ot and physio. thank God for Great Ormond Street.
The success of any physio program depends on how well you 'do it' (jrs own words- although he does describe them as a pain in the neck).
We are all ready seeing an improvement. I dont think children with hms are ever 'built up' . One growth spurt can undo all the good work. It is a case of constant monitoring and constantly working at maintaing 'good' muscle strength and tone.