Neurological symptoms in babies - any experience?

[Worriedwait]

I'd be very grateful to hear any experiences from parents whose babies have been diagnosed with a neurological condition. I've ended up down a bit of a rabbit hole, concerned about my 8.5mo.

He's had investigations done for possible seizures, where his head will quickly drop down to his right shoulder and his right arm will stiffen. He'll have these movements a few times in quick succession, several times in a day. He can go a few days without one, and then it'll start again. It's been going on for a couple of months now and the movements are as distinctive as ever. He has also recently started shaking his head during these episodes, which has only made me more worried.

Other things which are causing me concern, with Dr Google suggesting cerebral palsy ...

• He doesn't weight bear at all. If I try to get him to stand, he'll tip-toe and cross his legs, or he'll extend his legs behind or in front of him.

• He started commando crawling a couple of weeks ago but it's lopsided, he doesn't really extend his right leg much, and doesn't use it to push himself forward.

• He's recently started holding one hand in a fist with the thumb tucked into his palm

• He only ever seems to roll onto one side (left)

• He has a preference for lying on his right side, and has a slightly flattened head as a result. I took him to an osteopath as a newborn who thought this might be due to his position in the womb. Osteopathy helped, but obviously didn't solve the problem!

• He arches his back and throws himself backwards much more frequently than I remember with my eldest. He definitely does it as a protest, but he seems to do it when content as well. He's incredibly strong, and I've come close to dropping him on a few occasions.

He is meeting other milestones though - he rolled early and has been sitting unaided for a couple of months. He's usually content and smiley, and his fine motor skills seem very good.

He's had an MRI scan for the possible seizures which was clear, and is due to be seen for a development review by paed consultant next month. I haven't had a chance to discuss anything else. I'm feeling really anxious about him but I'm not sure whether I'm being neurotic (likely!) or whether all of these symptoms point to something worrying.

Hopeful bump and apologies for the essay 😳

Hi. I can understand how worried you must be but also it’s good to stay positive and not let your mind run away with you when nothing bad has been told.
Did you have any birth problems with your DS when he was born that could point to CP? One on my daughter’s friend suffers from seizures and did so shortly after birth. After extensive testing she turned out to have epilepsy and is fit and well now but still does suffer from them although much less as is on medication. She’s 8 now and is so clever.
Maybe try an epilepsy specialist privately? If it’s affordable for you? Also great news on the MRI. Fingers crossed you solve the issue and it’s straight forward. :)

Sending a hand hold. DS2 was under neurology for the first year of his life so I understand how agonising the wait can be and how hypervigilant it makes you. He actually ended up without a diagnosis and is a happy and healthy nearly 2 year old. He was under neurology for sustained ankle clonus, high muscle tone in both his legs and some left handed fisting… Dr Google diagnosed CP on the spot but the very experienced consultant neurologist we saw explained that all of these things can pass in newborns and she was right. By a year he had outgrown it all.

I’m afraid I don’t have much knowledge on the potential seizure side of things (although repetitive movements seem quite common in babies and aren’t always neurological) but the above shows that even with possible red flags things can change quickly.

X

Oh and DS1 who is now 4 years old used to do the ear to shoulder dip constantly. I was worried it was a seizure but ended up being chronic ear issues/infections or around the time of teething.

Thanks so much for these replies - i definitely needed a reminder not to catastrophise!

@Foreverbaffled sounds so stressful with your DS2, but what a great outcome. I need to remember how resilient babies are and how much they can grow out of at this age. With your DS1 and his head movements, did you have the ear problems diagnosed or did you make the connection on your own?

@NicoleKidmanSuperFan the only thing about his birth that I keep going back to is how long it took for him to take a breath. He was born in the pool and it felt like ages for him to breathe properly - I remember asking if he was OK but the midwives didn't seem worried at all 😬

@Worriedwait DS1 ended under ENT with chronic ear infections (oral antibiotics from the GP never worked) but I could always tell he was brewing another one as he would start dipping his head to his shoulder or raising his shoulder to his ear!

Did he have an EEG to rule out epilepsy or anything. You can have a one sided hemiplegia caused by a stroke before birth, which may account for some of the symptoms, although it does sound mild, and can resolve spontaneously

Have they ruled out infantile spasms?
Do you have any video of the head drops?

@hewouldwouldnthe he was hooked up to EEG for two hours (including a 40 minute nap and a test with flashing lights) which was also clear, but he hadn't had any of his episodes that day. He can go a few days with nothing at all, and then he'll have several episodes in one day - they seem to be totally random!

There was talk of him having a 12-24 hour EEG but it wasn't arranged. I'm wondering if I should push for one..?

@hbdgwalls I assume the EEG ruled them out? That was the very first thing I thought it was!

We do have quite a few videos now, and the consultant has just requested more! The doctors we've seen so far have only been investigating the movements though, they aren't aware of the other stuff I'm concerned about and I'm not sure whether I'm just being hypervigilant/neurotic, or whether all these little things together indicate something worrying.

The eeg should have been obvious for IS.
Sounds more like a focal seizure to me though.

@hbdgwalls thanks for this video! It's so hard to know, because his movements do look a bit like this. And he didn't have any episodes during the EEG so I'm not sure whether anything would have been picked up? I'm sure I read somewhere that IS would cause an obviously irregular result on EEG, even if they aren't experiencing spasms at the time.

It's such a worry. My instinct says that something isn't right with him, but I'm also a natural worrier and I'd be the first to admit that I've ended up in a Google wormhole over this. Every little thing he does, I'm now wondering whether it's normal - apart from anything, it's horrible to be scrutinising your own baby so closely!

@Worriedwait sorry to chime in again! In IS the EEG is very deranged so I doubt it’s that. Again I worried about this and the consultant neurologist reassured that it would be very obvious from
EEG. The problem with neurological stuff is that so much totally normal stuff mimics it.

I actually don’t think anything you’ve said is alarming but after PNA twice I have huge empathy for what you’re going through (I mean that really kindly and don’t want to sound dismissive but the things you’ve spotted would likely be more consistent if problematic, eg the back arching, hand fisting.) Both my boys have favoured one side, both have a little flat spot on their head to prove it and as long as the asymmetry in movement isn’t pronounced it can also be normal (both boys boys would only walk up stairs with the right left first etc).

@Foreverbaffled thank you. You're totally right - I am feeling particularly stressed and anxious (I mean, aren't most people at the moment?!), and I do know that I need to try to get some perspective.

I think I just need to try to get some reassurance from a doctor and then I'll relax a bit. Despite all the testing, we've had a ten minute chat with a consultant about 6 weeks ago, and that's about it! My anxiety and Dr Google are filling in all the blanks.

@Worriedwait this exact same situation is happening to us - do you have any update to share?