[Help] Epilepsy

[Brian Fantana]

Evening all,

Digging into the collective wisdom and experience of NSC once again. Unfortunately, it looks like my young son has epilepsy (he's had two suspected seizures in the last couple of weeks) and is due an EEG (amongst other tests tomorrow).

Are there any sufferers on here (or parents of sufferers) who can offer any wisdom, advice, tips or questions to ask the specialist tomorrow? Also particularly interested in anyone's experience with any of the various monitoring devices that seem to be available.

Many thanks in advance, as ever.

 

[timbha]

No experience but I wish him well

 

[Austrian Gull]

I had my first epileptic attack when I was 17 and have been on medication since (35 years). My warning triggers are usually sleep deprivation and stress and I have had to live accordingly - not overdoing alcohol, for example, and paying attention to the warning signs. I occasionally feel absent while eating but if I get up and walk around, everything returns to normal.

I have probably only had around five seizures but I always lose consciousness. It's pretty scary, also for my loved ones, but I tell myself there are people with far worse conditions. My wife has tried to encourage me to come off the medication as I am seizure-free for 12 years now but I wouldn't be allowed to drive for six months.

The toughest thing in a way was being the boring bugger sometimes when other people were caning it but now I'm so old that's not a problem any more!

Good luck to you and your son.

 

[Harry Wilson's tackle]

Not my field but can do some research if others with more hands-on experience fail to step forward.

I know enough to know that there are much better solutions than there were when I was growing up in the 60s and 70s.

Best wishes

 

[zefarelly]

Not my field but can do some research if others with more hands-on experience fail to step forward.

I know enough to know that there are much better solutions than there were when I was growing up in the 60s and 70s.

Best wishes

I know nothing about epilepsy, but like my 80's /90's solutions . . . .Do your favourite 60's/70's solutions involve 3 skins, or on occasion 5

on a more serious note, a decent dr/consultant should make all the difference, posibly even med free . .My Uncle's managed to swerve his issues with lifestyle changes. . .

 

[thedonkeycentrehalf]

If you haven’t done so already, this is a great place to start (and my employers supported charity for this year) https://epilepsysociety.org.uk/

 

[Harry Wilson's tackle]

I know nothing about epilepsy, but like my 80's /90's solutions . . . .Do your favourite 60's/70's solutions involve 3 skins, or on occasion 5

on a more serious note, a decent dr/consultant should make all the difference, posibly even med free . .My Uncle's managed to swerve his issues with lifestyle changes. . .

No evidence 'herbal' self medication is useful. And skinning up is hardly an option for a small child.

Reviewing drug safety vs effectiveness is a highly prized skill. I can do generic better than most but I always defer to the subject specialist in the first instance.

 

[martin tyler]

I have a son with Lennox Gastaut syndrome who is now 6. We have a specialist in Eastbourne and another in evilina that are very knowledgeable.

Most the information comes from you on the diagnosis as well. As hard as it is if you see a seizure if you can record a few seconds it can help.
They should make a referral for an EEG. (See they have) which will help potential diagnose the type but not in all cases hence they will ask a lot of questions when the referral comes around.

Breath easy pillows are a great place to start as a basic takes worry out of seizures when there face down. We have a video monitor at night as well but no full bed alarms but these are available.

They discuss all medication options with you. Some do have potential side effects some very severe - it is worth understanding these. They are trial and error we are currently on a 3rd type but this is 2 medications.
Emergency medication courses are available via nhs - this is given for seizures over 5 minutes.

There are incidents you may not think are seizures that are. Any sudden drops to the floor can be a drop seizure and absent seizures where well there completely absent to all that is going on. If you have seen these well worth mentioning as well.

It’s a learning curve. If you want to PM me anytime I’m no expert but sometimes it’s good to talk to others.

 

[Kosh]

Our daughter started started having severe seizures, after being diagnosed with absence seizures when she was young.

She’s 12 now, and to put it bluntly, there were some seriously horrific episodes on our journey with full blown epilepsy…

It took a year for the medication, as it’s gradually increased to avoid the risk of side effects, to get a grip and halt the twice/three times weekly full seizure episodes… it left us all exhausted… it’s awful to watch and go through - but we persevered and eventually we did get there… we’ve now gone 18 months seizure free and believe me - that’s a huge victory over this fucker of a condition…

Stay strong, and although it might take time - don’t give up ! In most cases it can be controlled.

 

[Brian Fantana]

Thanks so much for this. Would be interested in details of the pillow and video monitor that you use.

I have a son with Lennox Gastaut syndrome who is now 6. We have a specialist in Eastbourne and another in evilina that are very knowledgeable.

Most the information comes from you on the diagnosis as well. As hard as it is if you see a seizure if you can record a few seconds it can help.
They should make a referral for an EEG. (See they have) which will help potential diagnose the type but not in all cases hence they will ask a lot of questions when the referral comes around.

Breath easy pillows are a great place to start as a basic takes worry out of seizures when there face down. We have a video monitor at night as well but no full bed alarms but these are available.

They discuss all medication options with you. Some do have potential side effects some very severe - it is worth understanding these.
Emergency medication courses are available via nhs - this is given for seizures over 5 minutes.

There are incidents you may not think are seizures that are. Any sudden drops to the floor can be a drop seizure and absent seizures where well there completely absent to all that is going on. If you have seen these well worth mentioning as well.

It’s a learning curve. If you want to PM me anytime I’m no expert but sometimes it’s good to talk to others.

 

[martin tyler]

Thanks so much for this. Would be interested in details of the pillow and video monitor that you use.

Amazon product ASIN B01G75UJ70
These are the pillows we use and were recommended to us.
The monitor is a decent quality video baby monitor.

 

[martin tyler]

Thanks so much for this. Would be interested in details of the pillow and video monitor that you use.

Home

The UK's most trusted provider of reliable seizure monitoring devices for young people and adults.

www.epilepsyalarms.co.uk

This place was suggested as well for bed alarms but our team have suggested they pick up clonic tonic seizures only due to the movements they create. LGS is a mix generally of all seizures so havnt invested in one at the moment and got the video monitor back out. I would suggest waiting to see the EEG results to see if it picks up a certain type of seizure to make sure it’s useful to you.

 

[Brian Fantana]

Amazon product ASIN B01G75UJ70
These are the pillows we use and were recommended to us.
The monitor is a decent quality video baby monitor

Link to the pillow is broken unfortunately, but it looks like an amazon product?

 

[martin tyler]

Link to the pillow is broken unfortunately, but it looks like an amazon product?

https://www.onbuy.com/gb/p/breathe-zy-anti-suffocation-epilepsy-pillow-breathable-with-memory-foam-insert-for-extra-comfort-and-support-next-day-dispatch-made-in-uk-pillow~p73871694/?exta=cjunct&stat=eyJpcCI6IjcwLjkxIiwiZHAiOiIwLjAwIiwibGlkIjoxMDU4MDQzMTYsInMiOjUwLCJ0IjoxNzE1NDA3MjIzLCJibWMiOjB9&source=cj&AID=15292021&CJEVENT=394839ad10ad11ef825617120a18b8f9&extac=4023395

Same pillow different link - they have identical £10 cheaper on amazon

 

[Red Squirrel]

My first and only real advice to anyone with epilepsy is do not come off the medication however long it has been since the last seizure. Someone I loved very much went 17 years without an episode, they were then persuaded to come off their medication by "friends". They had a seizure whilst they were alone, there were complications and they are no longer with us now.

I hope I didn't upset anyone with that info. The dangers are avoidable. Treatments are better than they were. The neurology team should be able to pinpoint the triggers: strobe lights, sleep deprivation, stress. Once they find a medication that works then life should be fairly normal. There will be boundaries but these shouldn't be insurmountable. I know lots of people who have various types of epilepsy and they all lead very happy successful lives.

 

[Bozza]

Link to the pillow is broken unfortunately, but it looks like an amazon product?

Not sure what is going on with Amazon links currently.

Try this: https://amzn.to/4bDrsvP

 

[golddene]

A very worrying time for you as a parent. My son when he first went to school aged about four to five would lose focus when reading to the class, this was picked up by his teacher and we were advised by her to have him checked out, apparently he would be reading aloud to his class then momentarily pause for a few seconds then continue on as if nothing had happened. We had tests done on him at Southlands Hospital, Shoreham, where he was subjected to flashing lights while being wired up on a ecg monitor which brought on an episode, fortunately his diagnosis was him suffering petty Mal form of the illness which was controlled with medication, this was one tablet a day for the next few years. We were told at the time that the likelihood was that he would grow out of this, Fortunately he did and was able to come off the medication by the age of 12-14.

My brother years earlier unfortunately suffered with Grand Mal from a similar age to my son and his episodes were much more severe which would lead to seizures and leave him unconscious, during one of these episodes he was at home alone and suffered awful burns when he fell back onto a fire. He eventually also grew out of epilepsy at around the age 16-17. I only witnessed one of his episodes during a visit home as we were a large family and I had left home before his epilepsy started, but the experience was very traumatic at the time.
Wishing you and your son all the best and hope that any medication prescribed will control his condition and he grows out of this as speedily as possible. I suspect I don’t need to say this but look after him and watch over him as sometimes the episodes can come on unexpectedly. All the best.

 

[Kosh]

I should add - that our daughter is doing brilliantly, dealing with the adverse impact of 350mg of lamotrigine and 14mg of ethosuximide per day… we’re absolutely militant about medication timings… twice at 7:30am and pm with the above dose divided into two.

Taking on Epilepsy - in its full blown form is a war of attrition, there is no silver bullet and you have to adapt and live with it as a family… luckily we’re out of the period where we’d lie awake at night listening for signs of a seizure, but when your baby girl falls down the stairs (during her first full clonic tonic episode) and you’ve got her in your arms because you literally think she’s dying… well, the fear never leaves you, never… at this point we had no idea what was wrong… obviously we thought she’d had severe head, neck, spine trauma… all whilst her 8 year old brother watched in in horror… you can imagine the wider impact.

When we’ve needed the (wonderful NHS) and we have - blue lights on four occasion's, at home and school… well, you come to realise how valuable our health service is… the local specialist/consultant team too have been with us every step of the God awful way.

Epilepsy Action are a great source of support and advice

Ultimately, our daughter now has freedom, the kind of which we could have only dreamed of at the start of this journey… all down to her medication and she gets this too… even though she hates taking it at times.

It’s really hard, but I’ll say this… it puts football in perspective… truly and just about everything else too.

I tried to be a man about it and bottled it up… this is going to sound odd, but the dam burst two Xmas back when we were sitting as a family watching that Boy, Mole, Fox, Horse cartoon I was in bits… I couldn’t stop crying it did me the world of good… so if you need to, let it all out.

Good luck to anyone who encounters Epilepsy, but never give up.

Home - Epilepsy Action

Epilepsy Action improves the lives of everyone living with epilepsy. We provide info, support, training as well as fundraising and volunteering opportunities.

www.epilepsy.org.uk

 

[Brian Fantana]

Thanks to everyone who has replied. As ever, the knowledge and eloquence of posters is remarkable. Some very interesting and useful things to be aware of and investigate.