Newborn tube fed and hardly awake

[Richard1974]

Hi, when our son was born he was referred to a special baby unit and GOSH because he had seizures and abnormal movements.
Also never breast fed.
After 4 weeks and MRI scans and other tests which have all come back clear we were sent home.
Although we are still waiting on a gene test to come back.
He hasn't had any seizures since returning home, but is on Phenobarbital and Keppra for the time being.
He is tube fed because he won't feed from a bottle and is hardly awake. And when he does open his eyes they either move slowly from side to side and its hard to tell if he is actually looking at us.

Has anyone had a similar issue with their baby?

Thanks

Hi Richard1974, my daughter also had seizures and abnormal movements as a newborn, hers were due to a brain injury at birth and the area of damage was very clear to see on an mri. She was on Phenobarbital for a year and it was very sedating so possibly that could be contributing to your sons sleepiness. My daughter was also (and still is!) tube fed.
I would say it might be a good idea to take a video on your phone of the eye movements that you're seeing, it could well be a sort of disorganized movement but also seizures can present in lots of different ways and would be a good idea to let your sons paediatrician or epilepsy nurse (if you have one) have a look.
Hope you're ok, what a very stressful few weeks for you as a family.

Hi Rosielea,

Sorry to hear about your daughter. What is her outlook now? How old is she?

I have filmed and shown the paediatrician his eye movements but she couldn't give a reason for them.

When your daughter was on Phenobarbital, was she awake much?

Thanks

My daughter has been on phenobarbital since birth and is currently being weaned off and put on vigabatrin.

Tbh I didn't notice the phenobarbital making her sleepy but she can't fix or focus and her eyes do what you say.

She has a potential mitochondrial disorder/ other genetic condition and is currently having her genes tested.
Definitely video any abnormal movement. Dh and I were in denial that dd was having epileptic seizures for 4 weeks and we videod an episode and she was put on a new course of drugs immediately!

She was also tube fed for 6 weeks until I took it out determined to bottle feed her (she never took the breast as she had too much going on in her head). We are also attempting to wean her now dispite poor head control.

Your son sounds v similar to my daughter other than her MRI was abnormal!

Hi. My sons MRI was normal as well.
Still waiting on gene test but he is still very lethargic.
Did you just take the tube out without the doctors consent? Read that the baby couldn't be forced to feed this way.

We had a SALT look at her who said just to introduce it very slowly. Mum knows best and I didn't believe she needed her tube.

Is your son still lathargic? Is he on a very high dose of phenobarbital?

We had another meeting with GOSH. Gene test hasn't come back yet but son does have Epilepsy. Which form they don't know.
He is still very lethargic. He isn't really on a high dose of Phenobarbital or Keppra. Just don't know what to do.