Infant epilepsy experiences?

[Lulubon]

I posted a thread re. My 5 month olds seizures.
He’s since had another seizure 1 week after the last.
The first was a tonic clonic seizure (5/5/21)
Second a focal seizure (9/5/21)
And the third a focal seizure (16/5/21)
(A few query seizures in between)

Our first hospital stay was 4 days- no temp, virus or any other infection.
The consultant took it very seriously and he’s since had an eeg- inconclusive
And a sedated mri- next week.
The most recent seizure was incredibly scary
We were in the car, DS head was right back, eyes and mouth wide open, we pulled over and just could not wake him. Lasted about 3 mins, eventually he came round but went straight to sleep. But we were CONVINCED he had died it was extremely traumatic. We were admitted once again.
This admission was only 2 days and this dr just wasn’t concerned... she said we don’t need to worry and to continue with our lives.
I just can’t understand why the two drs took the seizures so differently. I’m worried this is going to be brushed under the carpet with no explanation.

Has anyone had an experience like this. Surly this is classed as epilepsy?

If anyone has any similar experiences please let me know

Thanks in advance 😊

One explanation (slightly narrow) - if the underlying issue is "already under follow up with someone else in a safe way", consultants are often less likely to involve themselves in a direct way in steering the plan. If an MRI and other investigations are going ahead that means somebody has "ownership" of your situation so I think it doesn't mean the newer consultant disagrees with the plan or the situation being important, just that things are broadly safe and they don't need to make sure anything extra happens right now.

I have a child with a v rare and devastating form of epilepsy so we see numerous seizures of all different types on a daily basis.
I know it is terrifying at first and it is hard not to panic completely . One thing that helped me was to watch every seizure video I could find on YouTube etc. Seeing people having real seizures desensitized me somewhat and helped me recognise subtle seizures I might otherwise have missed.
Have you got a neurologist yet ? And have you been prescribed any meds at all?.
By the way It is v common for people to sleep after seizures as they will be exhausted. It is called the post ictal phase.
Finally read and research as much as you can and be proactive with medical.professionals. You are the expert on your child so report any concerns, record seizures and email to the team etc.
I am sorry you are going through this. If is v hard to see little ones seizing.
If I can ever be of any help.at all.please PM me x

@lesugrist thank you. I agree the dr did say the tests lined up were the appropriate tests etc. I was more confused by her ‘continue with our lives comment’ as surly we can’t rest until we know our baby is okay!

@flapjackfairy
Oh my, I’m so sorry to hear that. It must be awful.
I’ve not watched any videos but I have tried to do some research, I’ve also contacted a charity.
So we are due to see the same consultant, she’s a paediatrician who specialises in neurology. She also in contact with another bigger hospital’s neurology team, and the hospital’s epilepsy team too.
They mentioned meds but the most recent dr said he doesn’t need them as the seizures don’t affect him daily.

Thank you so much xx

@flapjackfairy I think I'll be in the same boat as you if the syndrome has 3 letters and starts with 'l'.
OP it is tough. You need to make sure they tell you what to do if they have another episode. Generally it is dial 999 after 5 minutes but they should direct you for this.
It is utterly shit

@paradyningj
My son has kcnt1 related epilepsy resulting in malignant migrating partial seizures of infancy. Quite rare at present . And yes it is rubbish . Nice to connect with another parent though. How old is your child ? If you dont mind me asking .
My son is 7 now . Not bad for a child nor expected to see their first birthday.