To ask you about seizures in babies?

[inkworks273]

Sorry to post here but I’m desperate.

My 9 month old son had a seizure last Thursday morning and another one on Friday afternoon.

His eyes glazed over, his body then stiffened and his lips turned blue. It didn’t sound like he was breathing but you could hear a little grunting. This lasted for a minute or two before his body relaxed and he started breathing normally again. His eyes then started rolling back in his head and he just wanted to sleep. He slept the whole way in the ambulance to the hospital.

Doctors are taking a wait and see approach at the moment and want me to film it if it happens again.

Just wondering if anyone has experience with this? Obviously I’m worried he has epilepsy and I’m on edge, constantly worried he’s going to have another one.

No direct experience but from what I understand seisures can be quite common if the baby had a temperature at the time www.nhs.uk/conditions/febrile-seizures/

If not there is more info here about the various causes
www.epilepsy.org.uk/info/children-young-adults/newborn

I should add although the link is to an epilepsy site most of the causes listed are not related to epilepsy

Yes OP- my LO had her first seizure at 18months old- was terrifying as had no idea what it was. The sleep after is a typical reaction, their bodies just crash with exhaustion.
We were then referred to the first seizure clinic, and advised these things are often a 1 off and they wouldn’t do any immediate tests.
She had her next seizure at 23 months- we were then sent for a eeg - before the results she had a 3rdseizure.
The eeg was conclusive with focal epilepsy. Tbh had the eeg shown nothing- which it can- having had 3 seizures they would have classed her as epileptic. Now 2.5 she is on 2 x a day medication, no seizures since she started- and next week she will go for an mri to determine the cause. She’s met all her milestones and she’s a bit young for childhood epilepsy which they grow out of-
Likelihood is they may find small scaring on her brain. It won’t change her treatment as her seizures are manageable but will help us build a picture of what’s happening.

It’s a scary time but our experience
Of the care from the nhs has been amazing and supportive!

I should add we filmed one of ours and it was helpful to everyone- it matched up with the eeg results as our LOs seizures are on 1 side

Yes, my 5 year old started having 'vacant episodes' age 20 months. He basically looked as though he was day dreaming but his eyes or fingers would flicker. They lasted 5-30 seconds.

A few months later he started with a tremor that looked a little like Parkinson's, again it would be in short bursts and was really hard to video. It took till just before his 4th birthday to get anyone to listen and do an EEG.

By which point he'd had about 7 clonic tonic seizures (violent, jerking with loss of consciousness afterwards).

His standard EEG was inconclusive so we pushed for a sleep deprived one - he was kept up till 12am and woken at 5am and encouraged to sleep during the EEG. He had two massive seizures during the sleep section and was confirmed to have global epilepsy.

Don't be fobbed off. My boy went 2 years undiagnosed, so 2 years Not medicated and I shudder to think what could happen.

The EEG is non invasive and then only reason for wait and see approach is cost cutting - don't stand for it. Brain injury or death are at the extreme end of epilepsy injuries but doesn't mean they don't happen and smaller children are most susceptible to them.

My LG had them from newborn and we didn't have a clue what they were, we thought it was an over reflex. Then at 9 months old she had another seizure in an ambulance that lasted a considerable amount of time and it all linked together. She was having convulsions since birth due to temperature. It was a very hot summer, the summer she was born and was a very hot baby, still a very hot child. They do grow out of them. I can't 100% say your childs is the same as mine but sounds very similar

A friend's child had this (not sure what the exact form of seizures was but baby was rushed to hospital each time). They did in fact grow out of it which I think is the most common outcome. Obviously I have no medical knowledge but from what my friend said seizures are more common than you'd think and not usually an indication of a long term problem.

Is your DS unwell? My 18 month old had this, linked to a high temperature spike caused by a throat infection, but just the one fit. She had a couple of days in hospital and it hasn't yet recurred. It's linked to young children being unable to control their temperature.

If it's illness / temperature related it's a game of 1/3s - 2/3 of children will never have a 2nd one, 2/3 of those children who have a 2nd one will never have another and they'll then investigate in the cases of the other 1/3 who have further fits.

Hugs for you OP as it's terrifying to witness. We've been told to wait 5 minutes before phoning an ambulance, if it happens again, as she wouldn't need the hospital if it lasts less than 5 minutes.

My son had a febrile convulsion at 18 months and was out for quite a while. We rushed him to hospital and it turned out he had a viral infection and a very high temperature that we had not had any idea about as he was running around and eating etc.

Apparently it's not that unusual.
He was slumped in my husbands arms with blue lips the whole way to the hospital.
My poor husband got the most awful shock as he thought he was dying in his arms. Awful.
It never happened again, thankfully.

Thanks everyone. He hasn't been unwell and his temperature was normal both times. It was completely out of the blue.

Everything I've read says 2 unprovoked seizures means epilepsy so I'm absolutely worrying myself sick.

@inkworks273 if that's the case I would be being very assertive at this point.

Watch and wait is not an option. Go back to the
GP, arm yourself with with information around unprovoked seizures from the nhs choices webpage and stand your ground. Ask for a waking and sleep deprived eeg - if they continue to refuse under 'watch and wait' contact PALS and raise a complaint.

From the NICE guidelines 1.4.6It is recommended that all children and young people who have had a first non-febrile seizure should be seen as soon as possible[7] by a specialist in the management of the epilepsies to ensure precise and early diagnosis and initiation of therapy as appropriate to their needs. [2004]
Don't be fobbed off, OP, you need referral to either a paediatric neurologist at a tertiary hospital or a consultant paediatrician with an interest in epilepsy at a district general.

Jut managed to speak to the doctor who dealt with ds. He is a paediatric surgeon, who specialises in neurology. He runs the epilepsy clinics in the hospital.
He does not believe that what happened to our son is epileptic in nature and is putting it down to a one off episode. He is going to send us out an appointment for a follow up and said if anything happens in the meantime to bring him straight in.

One of my DSs had 3 episodes of seizures at around 2 and 3 months old. After the second hospital stay we were given medazolam to use if it happened again which it did and I had to use, it worked and we just spent an afternoon in hospital that time. Due to him being so young, he had loads of tests and referrals but after the 3rd episode, it never happened again. He’s 7.5 years now, happy, doing well at school and like most other kids his age.

They never found a cause in his case, all tests were normal.

I hope you find some answers for your DS.

Ds1 had two when he was 14 months and 18 months.

The first was very obviously a ‘typical’ febrile as he was unwell and had a temperature. It was classed as very severe as he fitted for over 5 minutes straight and then took about 30 minutes before he was lucid (as in clearly able to recognise me and respond, although he was awake). I honestly thought that was it, it was awful.

The second was less severe and only lasted a couple of minutes and he came around a lot more quickly. BUT he was completely well. No temperature, cold or anything.

However, it happened at 7pm, after we’d been home for five minutes after being out in freezing Dec temperatures for a couple of hours and had gone into a 22 degree heated house.

The Drs told me that in susceptible babies a sudden temperature change could also trigger one, although he didn’t actually have a temperature. Never heared of that before but ‘sudden temp rise’ was recorded on his notes.

He’s 12 now and hasn’t had any issues since.

No temperatures in my lo either - and she never had a seizure when she was unwell with the chicken pox- pre starting the medication.
I’m surprised having 2 they aren’t proposing an eeg?

So glad your lo is doing well @OnlyFoolsnMothers It's good to hear that she is developing normally.

I will ask the question about the eeg at the appointment.

Long story short - my daughter started having short seizures at 18 months and grew out of them by age 3 and a half.

It was so scary and worrying at the time but they never figured out what was causing them and she just grew out of it. She is well ahead of all her developmental milestones, socially and academically, now at age 5.

(Tests wise, she was given an ultrasound as she still had some fontanelle left when they started, a sleep EEG and an awake EEG)

Ds started having sezuires at 6 months old. We spent several days in hospital as his sezuires were clustering and he didn't fully recover between them. He was given an emergency CT which appeared to show encephalitis, an MRI a couple of days later ruled that out. He was started on Keppra. He had several more addmitions over a 6 months as the doctors worked to find the right does and combination for him. He was also diagnosed with a genetic deletion which is linked to epilepsy.

At 4 he still needs his meds, we attempted weaning after 2 years seizure free but he started to have them again. The doctor who treated him in a and e told me epilepsy is not the end of the world and for him it hasn't been at all. But it was hard to come to terms with and find people we were comfortable leaving him with. He attends a fabulous little nursery now and will start school this year.

Could it be Reflex Anoxic Siezures (RAS), can be triggered by pain or in my dd's case, loud noise/shock.

Read up on it, it sounds very similar.

My son had a bad fit at 14 months completely out of the blue, no temperature or anything. Kept in hospital for 3 days. The morning after he had been discharged he was covered in spots. Turned out to be German measles normally a fairly mild illness ( apart from pregnancy) . I was distraught thinking omg now what, but turns out it was a febrile convulsions while the German measles were quietly brewing in his system. He never had another one but we were super careful whenever childhoods illnesses were doing the rounds

@ahenderson270 What is global epilepsy? How is your son doing now?

@dobbythedoggy Are your sons seizures completely controlled when he's on medication? Has it affected his development at all?

@twoheaped I've looked into that but I don't think so as he was playing quietly both times.

My almost 3 year old started having seizures at 3 months old. Always very long seizures that had to be stopped in a&e, after the first one they did the usual blood tests and lumbar puncture to check for meningitis. After the second prolonged seizure he had genetic blood testing done, MRI and eeg. His results confirmed a rare epilepsy syndrome! Anyway my point is, I would expect after 2 seizure they would be doing some investigations like an MRI, EEG?

He just had a 30 minute seizure at 4am so I am currently trying to distract myself while he sleeps it off in hospital.

@inkworks273 when his on the right dose of Keppra his sezuires are controlled. He went two years with no sezuires so we tried to wean him off it and he had several small seizures so we put his dose back up again. Since then his been seizure free for almost 6 months.

He does have some developmental issues but these are due to his genetic condition rather than epilepsy. He has language delay and sensory issues and hates change.

My friends little one did something similar to your child but the doctor put it down to shock (she had fallen) apparently it is quite common with infants. That being said, what happened with your little one was just days apart, that would raise questions for me.