Recent epilepsy diagnosis

[jennaba]

Hi, my 16 year old niece has recently been diagnosed with generalised epilepsy.. no pre warnings.. she’s on lamotrigine, which controlling tonic cloinic but not absent seizures..

The nurse has advised to keep an eye on heat & tiredness which we can manage. But any other advice, what to avoid, what can help.. anything really..

We travel a week tomorrow

Many thanks

[aqualiv]

So does she have absence seizures?
I can advice on those as my ds has had them since he was 4 (now 15)

[jennaba]

Originally Posted by aqualiv

So does she have absence seizures?
I can advice on those as my ds has had them since he was 4 (now 15)

See more...

Yes she does xxx

[aqualiv]

Ok we find with ds his abscence seizures go up considerably the first few days of the holiday.
He does them at the most awkward time, such as going through security or when someone asks him something
Stress, tiredness and low blood sugar tends to be the biggest triggers
I make sure I am very close to him going through security so I can usher him through or talk for him if needed
I find the biggest issue is most people dont know what they are so it just looks like ds is being rude and ignoring people when they ask him a question
The good news is that after a few days the abscence seizures practically disappear once he relaxes and has less time on screens
We have also found that him taking his meds at night rather than the morning makes a big difference

Any specific questions please ask

[jennaba]

Originally Posted by aqualiv

Ok we find with ds his abscence seizures go up considerably the first few days of the holiday.
He does them at the most awkward time, such as going through security or when someone asks him something
Stress, tiredness and low blood sugar tends to be the biggest triggers
I make sure I am very close to him going through security so I can usher him through or talk for him if needed
I find the biggest issue is most people dont know what they are so it just looks like ds is being rude and ignoring people when they ask him a question
The good news is that after a few days the abscence seizures practically disappear once he relaxes and has less time on screens
We have also found that him taking his meds at night rather than the morning makes a big difference

Any specific questions please ask

See more...

Thanks so much for that, I’ll pass it all onto my sister in law.. your son sounds a lot my niece except her eyes tend to roll back..

Did you find you had any problems with any rides? She’s not a massive rollercoaster fan but hopefully will be going on most of the rides plus 3D shows, did you find an issue with any of them? xxx

[Buggles94]

Hi Jenna feel free to PM with any specific questions. My son was diagnosed with epilepsy in 2010. We love WDW and he has been several times since the diagnosis. He has absence seizures and tonic clonics. Triggers include jet lag, tiredness, excitement... He does to have a few in first few days and has had them whilst waiting to go on rides etc. We just explain what is going on and let him recover. Really hope the lamotrigine helps and that you have a seizure free holiday!

[aqualiv]

Originally Posted by jennaba

Thanks so much for that, I’ll pass it all onto my sister in law.. your son sounds a lot my niece except her eyes tend to roll back..

Did you find you had any problems with any rides? She’s not a massive rollercoaster fan but hopefully will be going on most of the rides plus 3D shows, did you find an issue with any of them? xxx

See more...

Ds loves all of the rides and we ve never had a problem on any of them or the shows x

[Bootrip2]

As a side have you updated travel insurance?

[buryboy]

Does your niece have any issues with flashing lights ?
That’s often an epilepsy trigger
Also does your niece suffer more around the time of the month?
My DWs epilepsy was linked to hormones - worth keeping a log

Insurance definitely needs telling

Good luck

[Bootrip2]

I am always worried about DD on spinny stuff too. She loves roller coasters though. We avoid anything with too much flashy lights, like space mountain.
Heat and exhaustion are also difficult to manage, we quite often only do half days in parks, either morning and afternoon or afternoon and evening.