This article is based on my experiences in having a child with hypotonia and comes from researching hypotonia and speaking to other parents of children with hypotonia, on the Internet and in person.
My son, Iulen was born on 23 October 1996. When he was born, there was concern over his initial floppiness and whether his features indicated he had some kind of syndrome, but a senior consultant told us he was fine. He was a slow feeder initially, but began to thrive. At his six week check, a developmental paediatrician said he was healthy and fine. At three months, following check ups due to a respiratory infection, a paediatric consultant ordered a chromosome test, as there was concern he was pr otruding his tongue excessively (we now know due to the low tone). His chromosome test came out normal and we were told not to worry. At six months, during a routine vaccination, the paediatrician expressed concern he was not sitting up and appeared floppy. He also had a squint. We saw the original senior consultant again, who said he may have a rare syndrome. Finally, at about nine months, we saw a paediatric neurologist who confirmed that Iulen definitely had hypotonia and that his joints were hyperflexible - but he did not appear to fit any known syndrome - although it seemed unlikely he had a degenerative muscle condition.
Iulen is now two. He still has hypotonia and his joints are still hyperflexible. His squint is being treated with eye patches. He has just begun walking, and wears orthotic inserts inside his shoes to support his ankles. He is delayed in gross and fine motor skills and speech - he receives physiotherapy, occupational therapy and speech and language therapy. Geneticists have not diagnosed any specific condition, but we are awaiting an appointment with another neurologist to consider whether tests such as scans, biopsies or nerve conduction tests will provide any useful information.
Read A testing time for low-tone kids.