genetic epilepsy

[EmmyReece]

On tuesday our baby girl had a (what we now know) right focal seizure. I phoned the Dr and they said to take her straight into a&e, which we did and we were then admitted to the children's ward from there. She had another smaller one while the Dr was out of the room and we were admitted overnight.

The following morning we saw the consultant and he did his checks and said it was ok for us to go home. But the second they left the room and I lay her down to get her dressed, she slipped into another one. So, Chris (my husband) went running out into the corridor to get them back so they could observe this.

From that they decided to take bloods, order a cat scan and an eeg (which we would have to travel almost 2 hours to a hospital in the next county the following day). And that night she had another smaller seizure.

Her bloods have come back normal, as did her cat scan. But she showed some unsual activity on the eeg and she has now been referred to a neurological paediatrician and needs to have an mri done. If we can't get her to sleep through the mri, then we need to go to swansea and she will have to go under anaesthetic.

I need to go into hospital on monday for bloods to be taken to be sent off to cardiff for genetic testing. I had the same at her age, as did 2 of my aunties. So it runs in the family

We haven't got a clue what triggers them. But have now been told as soon as one starts we need to film her whole body throughout and phone 999 for an ambulance (we got told off for taking her to hospital in the car - even though this is what we were told to do by the gp) and instructions on how to help her.

Sorry if this is a bit of a jumbled mess, it's still very raw and I'm so on edge constantly watching her, wondering if every little thing she does is her potentially slipping into another one.

Did anyone else's baby start with these at such an early age? And how did you keep it together when all you want to do is fall apart?

 

[Peanut78]

I'm sorry you are going through this - it sounds very stressful.

We haven't been through exactly this experience (epilepsy in a baby) , but have been through a series of MRI's. I think in most infants and children they generally administer a GA for MRI's as they have to lie completely still for the duration and it's a pretty noisy machine.

If you had this as a child as did your aunties - do you know if they were considered benign seizures? My son has period of absence seizures - which are also considered benign and something they grow out of - although of course needs to be monitored.

It's really tough going through these uncertain and scary situations - but you will get through it Great that the doctors are being proactive

 

[AP]

Sorry I can't help with the genetic aspect. We're still on the edge after a large seizure a few months ago with alex - it was agreed in her care plan going forward that we wouldn't get meds at present to keep at home (she ended up with a collapsed lung)
We have been given the same advice - film and call ambulance. Being in the ambulance means access to equipment and meds you just don't have in the car. When they explained that to me I understood.
The first time is scary. Alex had what we thought was a mini seizure a few weeks ago and it started similar - I instinctively went into prep mode , whereas before I was in shock and dispair . You might find more knowledge helps your reaction in time.

A first aid course also helped my confidence

 

[EmmyReece]

We've had her first consultant appointment through for the 13th of October, which is a bit of a relief to see things moving forward slightly. We're still waiting on a date for the mri scan. And then it will be a case of waiting for an appointment in Swansea.

You know when you just have a gut feeling about something? This is how I feel about her mri scan. I just know there's no way on earth I'm going to be able to settle her long enough to have the scan without going under anaesthetic. It took long enough to get her to settle for the cat scan. So there's no way on earth she will settle for a longer and noisier scan

I hate how every time she does something I'm second guessing it. We were out for a meal on friday for bil's meal. Olivia started twitching her leg in her sleep and I started panicking that she was going to start having a seizure

That's a good point about the ambulance. Dh keeps questioning why we would need to wait for an ambulance. But that makes perfect sense, so I'll be telling him that. And I'll be having a look for a first aid course for myself. Dh gets them through work, but it can only be of benefit, so I'll definitely see what's available

Back to her waterbabies swimming lessons today for the first time since the seizures and I'm so nervous something is going to happen. Dh is 45 minutes away from me and I will have the car so he will need to borrow my mum's. Thankfully waterbabies have been amazing and reassured me that their staff all have first aid training and we have a plan in place in case she starts in the water. It still doesn't quite get rid of the nervousness though

 

[Tasha]

Im so sorry Emmy. That sounds so scary.

I can't help other than this. Millie's trust do first aid for £20 deposit that you get back if your baby is under one xx

https://www.milliestrust.com/first-aid-courses/family-first-aid-courses

 

[EmmyReece]

so our local health board are a bit stupid. They've booked Olivia's mri scan at the hospital where she had her eeg done (so 2 hours away), 3 hours before her consultant scan in our local hospital. There's no way on earth that we'll get there, get her settled long enough to do the scan and be back in time to see the consultant. So I'm going to give them a call tomorrow to cancel the scan as I'd prefer to see the consultant as I've got a few questions. The main one being, is it really fair to put her through trying to settle for the first mri when it's pretty much a definite that she won't stay still long enough and that we will need to have her go under?

Thanks for the link Tasha I'm going to have a look at the dates that they have available and see where we can go from there xx

 

[Peanut78]

What a blunder!

I'm surprised they are even suggesting you try to settle her and expect a baby to lie completely still through an MRI... For both our MRI's - one at age 2 and the second at age 6 there was no question that my son would not need to have a general... The main reason being that the child needs to lie completely still while going through an incredibly noisy machine...

I hope you resolve the scheduling issues and get some answers