Has anyone adopted a child who has epilepsy?

[melon301]

Hello everyone! If anyone has adopted a child, or siblings, who have epilepsy, I'd love to hear your experiences? What has day-to-day life been like? Are there things you have to worry about/consider that other families don't need to? Is it a very limiting condition? We are in discussions over a LO (toddler) who has epilepsy and I can read a lot online but would prefer to hear some 'lived experience' stories x

Yes but not clinic tonic type which I suspect you mean. my 3 had absences and only 1 still has them . 1 also had drop attacks from age 4 -11. Another had ones that caused his body to tremor for a few seconds ( can't remember what they were called). None developed into type of epilepsy of bm.they are all adults now
When first placed advised by the paediatric Dr to give Calpol at first sign of temperature and if it did not come down to seek medical attention. And to avoid environments eg flashing / strobe lighting that could cause a fit.none have ever taken meds for it.although one does have epilepsy meds for another condition not related to this.

Don't know how old your lo would be but one of mine does have loads of medical conditions and it was hard as people reluctant to baby sit.
There was a long fight to get his statement,now EHCP and move to a specialist provision .as he got older and he wanted more independence it was hard to let him go out ( before mobile phones were a thing)so I had a dog tag made with my contact details , conditions and meds etc .he still has it today on his key ring.

My sil has epilepsy and has a medi bracelet. She has a tracker on her phone. She know's when she is going to have a fit so if we get a call from her and we can't understand her there is a process in place to get to her.but may not be suitable at this moment in time.
So might need to consider education provision . School you select should have training if child has a fit.will specialist provision needed if they are frequent .
Consider how you will deal with potential hospital visits ,many and multiple health appointments . Work hours may need to be reduced or stopped altogether.i didn't / couldn't work for years due to appointments and child not being well enough to go to school.

Research how likely it could happen. I got to speak to children peaditrician which helped .
Good luck

No experience, but you could also ask in eg Children's Health re epilepsy in non adopted children. Best wishes.

No experience of a child with epilepsy, but my sister has epilepsy and based on this, I'd definitely consider adopting a child with epilepsy.

In addition to all the great points by Trainham, if you do adopt LO, think about how you might help them manage the social aspect of seizures - sadly, more often than not, adults stare, children get scared as they don't understand what's going on etc. As a consequence, epileptic children might be seen as weird/scary/freaks. 😥

Thank you so much for all your responses! And that's a great idea about asking in the general chats. I just want to make sure we're fully considering al the child's need - current and future - as we progress! That was a really good point about it possibly being another thing that might make them different, so we'd need to carefully think about how we'd help with that.

For me things to consider in order to make decisions going forward include:
1)is there a family history of epilepsy? If so what kind and how successfully managed is it?
2) what is the cause of the epilepsy? Have any brain scans been done to look for tumours/lesions? Sometimes epilepsy can be a symptom of other conditions.
3) how is the epilepsy currently managed? How will you support the child to take their medication? Do they require rescue medication?
4)What epilepsy specific training and support is your agency putting in place for you? I would be very firm on this if you have no previous experience of epilepsy. Do not be fobbed of with you'll get support from your GP and the child's paediatrician and as part of the medical meeting with a paediatrician.
5)has a claim for DLA been made that will be transferred over to you?

We adopted DS at two and he then developed epilepsy at six. It's a real spectrum of a disease - he was very very poorly but weaned off medication when he was nine. And not had a seizure since. In fact said lovely wee boy is now a young man of 19 and thriving but I know it's not that way for everyone. My friends DS has a different form of epilepsy and is eleven and still non verbal and requires a huge amount of daily support.

Our son has epilepsy but also has lots of other complex needs that have a greater impact on his day to day life.

The things we need to think about with his seizures-
he takes daily medications that we need to ensure he has at the same time twice a day every day. It can take time to get meds right
we have to take rescue medication everywhere we go
one of his triggers is getting too warm so no abroad beach holidays for us!

As other posters have said epilepsy is very diverse and can mean very different things for different people. Things I would want to know before taking on a child with epilepsy
what kind of seizures they have, tonic clonic, absence, focal, atonic etc
do they take daily medications?
do they have a rescue medication? If yes how many time have they needed it in the last year
how regularly do they have seizures and what kind
what are their triggers if any have been identified

my adopted child has a v rare epilepsy disorder that has resulted in brain damage and extremely.complex needs in all areas.
We see all types of seizures and yes it massively impacts our lives but we are at the v extreme end of the spectrum.

My adopted son has Down Syndrome and epilepsy thrown in for good measure. He takes several anticonvulsants and he was very lucky to be offered a vagal nerve stimulator. This has not stopped his seizures but has reduced the number and severity.
Just as an add on he is also severely deaf and if he is startled he will have a seizure. It can be quite worrying but manageable with quick thinking.