Help with Epilepsy sensor aids

[Furbaby1]

Hello my 17 year old son was diagnosed with Juveny Myoclonic Epilepsy in may, he is on Epilem. We don’t think this medication is helping.

Today he had two violent seizures one after the other- very very scary for us. He was laid on his bed and l was with him when they happened. These seizures weren’t like his usual ones. I am looking for some kind of sensor for when he is asleep as I am scared to leave him alone right now after I saw what he went through today. He couldn’t breath at one point.

Thank you

[Ferifree]

Furbaby1 @, I am sorry that you had such scary experience and I wish your son gets well very soon. Please talk to his neurologist to find the better treatment. Unfortunately, my son was diagnosed with epilepsy since 2020 when he was 13. I changed three neurologists since that time and we are still looking for the right medication to control his seizure. I know how awful is to see your teenager goes through the seizure while you could do nothing except helping him to go through it.😔

[Furbaby1 in reply to Ferifree]

Thank you so much for your reply.I am so sorry to hear you are still trying to find the correct medication for your son.

It is so so scary isn’t it? My heart is actually breaking as these seizures were so so violent and I can’t get them images out of my head.

Since he got diagnosed he hasn’t seen anyone- we have had 3 appointments cancelled. He had a reaction to epilem a few months ago and we rang 111- who were putting a matter of “urgency” to his specialist. Still nothing!

We have a number we got from the hospital yesterday for the epilepsy nurse to ring on Monday.

It is so sad for them isn’t it?

[Angie140720]

That really sounds very frightening for you. I also have Juvenile myoclonic epilepsy and my daughters have told me how frightening the breath holding is as well as the seizure, I am sorry you are going through this. Epilim is supposed to be the best medication for this type of epilepsy but I also found it made it worse and had to have a second medication added before things improved. You need to get hold of his consultant, epilepsy nurse or gp to get more advice on what to do with his medications.

[Furbaby1 in reply to Angie140720]

Thank you so much for your reply. He hasn’t seen anybody since his diagnosis in May. We have had 3 appointments cancelled with his specialist, he also had a reaction a few months ago and I had to call 111 and they think it was a reaction to his meds- still no word from the specialist.

At the hospital yesterday we were given a number for the Epilepsy nurse to ring Monday.

I just feel he has been diagnosed and left. He is sick on his medication and it burns his stomach, he also said it makes his jerking worse.

I am so glad to have found this forum.

Yes I went into panic mode yesterday when he wasn’t breathing and gurgling. He was foaming so so much and it was blood too where he had bit his tongue.

His eyes bulged and pupils so big- that hasn’t happened before, his eyes normally roll.

Can I ask if your seizures are quiet different?

Do you remember anything about them?

[Angie140720 in reply to Furbaby1]

I am pleased you are able to contact the epilepsy nurse and hope they can help you. My daughters tell me when i have the tonic clonic seizures I drop, eyes go back into the head, frothing at the mouth, I bite my tongue, breath hold and go blue for several minutes while I seizure and dont remember anything. I found the epilim upset my stomach, especially the 500mg tablet and has caused a disruption to sleep, increase in absence seizures and the myoclonic seizures (jerking) as your son says. It felt like as one part of the seizure syndrome became controlled another became worse. Eventually taking the dose I can tolerate of epilim which has got easier with time, combined with another drug to stop the absences and myoclonics things have improved but everyone is different and although seizures sound similar it's very much finding what works for your son and what he can tolerate. It's a very difficult process and I wish you all well tomorrow with talking to the epilepsy nurse.

[EpilepsyAction1 Partner Epilepsy Action]

Hi Furbaby1

I'm pleased to see you have heard from other people, and you are finding their support helpful. It can be a difficult and lonely place when first diagnosed.

It's also good to hear you have been given details of an epilepsy nurse who should be able to help with your sons on going seizures and treatment.

epilepsy.org.uk/info/treatm...

I just wanted to add something about your request for a device to detect seizures whilst your son is in bed.

We have information on our website about different mobile seizure alarms and apps that might be useful for people with epilepsy.

We can’t recommend any alarm, but we also cover ‘How do I choose a seizure alert system’ on this webpage. If you see one you think may suit your son’s needs, you could talk to the stockist for more in-depth information.

epilepsy.org.uk/info/daily-...

Also we have the Epilepsy Space section of our website to help 16-25 year olds manage their epilepsy. I wonder if your son would find this helpful.

epilepsyspace.org.uk/

If we can be of any more help, please feel free to contact the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Tuesday 8.30am until 7.00pm, Wednesday to Friday 8.30am until 4.30pm and Saturday 10.00am until 4.00pm.

Regards

Diane

[Lovingdean]

I contacted Alert it, just bought the pulseometer. Yet to configure it and read the hand book. They have a helpline. If Epilim isn't working he needs assessing. Lamictal is what my son is in, still has seizures but much less affected by them and shorter.