Susan’s son Lewis was diagnosed with epilepsy when he was just five years old.
She shares the impact seizures have on her son and how difficult it has been sourcing anti-seizure medication.
Can you tell us a bit of background on how your son was diagnosed with epilepsy?
Lewis took a tonic-clonic seizure at home and we took him to hospital where he was kept in for a couple of days.
They ran tests including an MRI and EEG and it was decided that epilepsy was the most probable cause.
He didn’t have any seizures for months until we were called to school when he was having one and then another where an ambulance was called.
He ended up being sedated because it lasted nearly 20 minutes. It was really awful to witness.
How did you feel when your son was diagnosed with epilepsy?
As parents, we were devastated and scared.
I have epilepsy and was diagnosed when Lewis was a baby, so I know first hand how debilitating it can be.
Lewis has autism and a severe learning disability, so we just felt so bad for him that this was going to be another thing for him to deal with.
What type of seizures does your son have and how does it affect him?
Since he had a few tonic-clonic seizures, he has only had focal seizures.
He can’t verbalise when he is having one but we can tell as he sits very still and smacks his lips and stares into space.
He often falls asleep after one.
Lewis doesn’t seem distressed either during or after but I feel terrible for him because he isn’t able to talk to us about how he feels, if he scared etc.
How difficult has it been to source your son’s anti-seizure medication?
We have had difficulty over the last three months sourcing Lewis’ medication.
He takes Tegretol liquid (Carbamazepine).
Our usual pharmacy is in Kilsyth and the first month, my husband had to source it from Cumbernauld after phoning round a few pharmacies which wasn’t too bad.
The following month I phoned round a dozen pharmacies before finding one in Stirling that didn’t have Tegretol but it was still Carbamazepine.
The Pharmacist said it was basically the same thing, just unbranded.
Great I thought until I picked it up and discovered it was bright orange and smelt and tasted different.
He is great at taking his medication because he is used to it being “his medicine” but even if I offered him Calpol for example, he would refuse it.
I have another two children who if I explained what was happening would accept the reason their medication had changed.
I could even convince them to take a tablet as an alternative but Lewis’ level of understanding is that of a toddler, so he would just refuse.
My usual pharmacist was really great when I explained the difficulties I was having and was able to source Tegretol direct from the supplier but this may not be able to continue long term.
How has those struggles to source your son’s medication impacted him and your family?
It’s a worry as although at this particular moment we have around two weeks supply, what’s going to happen next month?
Are things going to be even more difficult because there’s even more shortage?
We’re having to phone round looking for the medication.
My husband is having to leave work early to pick it up in some instances because I’ve not been able to drive for 10 years now due to having epilepsy.
What would you like to see happen so there are no medication shortages in the UK?
To be honest I don’t know much about why there are shortages in the first place.
But if they’re being manufactured abroad, maybe more should be made in the UK?
I’ve had pharmacists mention that the liquid is more difficult to source because it’s more expensive to make.
But that’s what Lewis’ Consultant prescribed so he shouldn’t be penalised for that.
If you would like to share your experiences of living with epilepsy, please email David Coates our Communications Officer at dcoates@epilepsyscotland.org.uk or call 0141 427 4911.
