My 10 month old has hypotonia, cant sit or crawl and can only roll over. He also has feeding problems and has a nasogastric tube and is on elecare, similar to neocate. He was BF until 8 months and then just weaned himself. We haven't been able to get any milk into him no matter what we try. He is 7.6 kg - was 6.9 before feeding tube and elecare started 3 weeks ago. Been told that it is likely milk protein problem as he is happy on the elecare and putting on weight. Problem is I cant get it into him orally. It seems he may have an aversion to milk because of the pain it has caused him in the past.
We have had chromosome tests and waiting for results. We see a geneticist next week. We have been doing conductive therapy twice a week which is seeing great improvements.
Is anyone else out there going through similar issues, hypotonia, delayed development etc. Would love to hear your stories.