Hello
Just looking for some support/advice.
We have a 9 months baby who from a motor perspective behave more or less like a 3 months baby (no real control of the head, fists often closed, he doesn’t roll or sit). He has been investigated since he was 7 weeks old as it took him over 3 months to smile, look at people and follow with his eyes. He is now very alert in that respect.
He was initially diagnosed with hypertonia (although with weekly physio this has got better) and the neuro-pediatrician believes this is more complex.
He has had a MRI and a Lumbar Puncture but those did not bring any findings from a neurological perspective. We are now doing genetic testing and results will take 12 weeks to come back.
That means we won't have those until he is 1 year old and this has been going on since he was 7 weeks. I initially researched everything (hypertonia, CP etc) but as things are getting ruled out, I am not sure I have the mental strength to do any more research.
Is there anyone else who has gone through this? Any optimistic or positive message that things could turn out to be OK? Or any recommendations on how to be ready for the worse? And what to do so we do all we can for him?
Thank you!
