VM 6 weeks old - advice?

[Pinkladytracy]

Hi, through my campaigning and spreading my awareness of my battle with VM an old acquaintance has been in touch tonight as her 6 week old has just been diagnosed with VM and she's in hospital with him now and didn't know where to turn! Obviously I've sent meningitis now phone number and website etc, but has anyone got any real life experience with VM and a baby I could pass on to her? I told her to post on here but this would be last thing she would have time for !! So I thought I would on her behalf? Any advice or help? Thanks

[Jules101]

Hi my son who is now two had meningitis & encephalitis caused by the parecho virus when he was 6 days old. Had seizures and repeatedly stopped breathing so ended up in intensive care and then high dependency unit and then a medical ward in a children's hospital. We were in for three weeks in total while he recovered. He had an MRI scan which showed signalling and white matter abnormalities and diffusion restriction. We were told to wait and see how he developed. He is a miracle & has done wonderfully but has had some issues which I think are related to what happened to him & the aftermath of the virus. He has ongoing respiratory issues / asthma and has had hospital admissions due to that. His immunity seems a bit lower so he picks up a lot of colds and viruses which then effect his chest/ breathing. He was a bit delayed in reaching major physical milestones but has mostly caught up now, & is in fact slightly ahead in some areas. However he does have a speech and language delay.

In the immediate recovery period from the VM he had severe reflux & also sleep myoclonus seizures.

My advice would be for your friend to trust her instincts and be on the look out for things following discharge from hospital. As I found the docs were slightly dismissive at times because he'd 'just' had VM. I've had to chase up speech and language input, hearing tests and neurodevelopmental review (which he still hasn't had) since. It's been made more difficult as parecho virus is quite rare and they don't know much about it / it's long term effects. If her son gets a good paediatrician I'd recommend trying to stay on their caseload as things may still require following up as time goes on. Hope that helps and her son makes a good recovery.