Since birth, my little girl; Miané experienced various difficulties and was hospitalized regularly. At the age of 4 months; during one of her hospital visits, our pediatrician indicated that it seems as if her development is a bit slow. He referred us to a Pediatric Neurologist who examined her and after MRI scans indicated that he suspects Sotos Syndrome; but that the diagnoses is foggy and that he is not 100% sure.
We started with occupational therapy at the age of 5 months and went back for a follow-up at 9 months. Again, the doctor indicated that he cannot be 100% sure and that the diagnoses still seems like Sotos but still there is something that’s different and that we need to come back for a follow-up at the age of 15 months.
We then decided that we need a second opinion and made an appointment with Dr Griessel in Bloemfontein. We went to see him for the first time on the 17th of June 2011. He requested a number of tests and indicated that upon completion we need to see a Genetics Specialist for final diagnoses. The tests ordered (especially the metabolic screen) took weeks to complete. We went to see the Genetics Specialist on the 15th of August 2011 and got the final diagnoses of Sotos.
At least know we know; we have a long road ahead of us – but we will get there!
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