Baby with potential neurological disorder

Anonymo83

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! 

Sandy_123

@Anonymo83 hi there and welcome to the forum 
I don't have any experience with this and others might comment who has. I'm hoping you get something back from the tests that give you some answers so you can move faward. Scope have a help line and some support information below you may find useful 

https://www.scope.org.uk/family-services/navigate/

Anonymo83

Thank you so much @Sandy_123

Anonymo83

Thank you for the kind words @woodbine x

Rosie_Scope

Hi @Anonymo83, I'm afraid I'm another that doesn't have much first-hand advice, but I wanted to welcome you to the community. And hopefully by bumping it up, someone might see your discussion and be able to offer their experiences. 

Contact is a charity for parents of disabled children that might be worth getting in touch with. I know your little one is quite young, but looking for some local support groups might help you feel less alone if you're struggling to cope with what's going on. There's some information about finding local support groups on their website and they also have a freephone helpline and an emotional support line.

I hope the tests give you all a better idea of what's going on and things start getting a little easier for you all

Anonymo83

Thank you so much @Rosie_Scope. Very useful information ❤️