Rosa was diagnosed with Canavans disease at 10 months.She is a very healthy and happy soul when she isn't afflicted by trapped wind,mostly caused by excess saliva. Rosa has acute hearing,but we aren't sure what she can see.
3 years
No surgeries to date. Rosa has had 2 MRIs, under general anaesthetic, at Bristol Frenchay Hospital.
Rosa has regular therapy with Portage, Physio, Special Nursery, Hydrotherapy, Music Therapy, Visual Impairment Advisor, Occupational Therapy, Speech & Language plus visits from the community nurse for children with special needs.....
Rosa has at home: A Jenx Gamma chair, Special Tomato chair, Otto Bok Kimba Spring wheelchair with a mini Caps seat, soon to be fitted with a Whitmyer head support; arm, leg and body gaitors, many toys from Portage and Visual Impairment including sensory equipment.
Rosa has been on Buscopan (Hyoscine Butylbromide) since the end of May 2010 to try and control her stomach/trapped wind discomfort. I am very pleased to say that it seems to be working wonders. Since she started it we have had no more painful trapped wind, even when she is teething and swallowing lots of saliva. Hooray!
We have tried the high dose amoxicillin therapy as recommended by Dr. Paola Leone but Rosa reacted badly to this so we stopped.
