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Unread 8 Oct 19, 03:05 PM  
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jennaba
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Hi, my 16 year old niece has recently been diagnosed with generalised epilepsy.. no pre warnings.. shes 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
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Unread 8 Oct 19, 03:13 PM  
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aqualiv
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So does she have absence seizures?
I can advice on those as my ds has had them since he was 4 (now 15)
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Unread 8 Oct 19, 03:24 PM  
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jennaba
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Originally Posted by aqualiv View Post
So does she have absence seizures?
I can advice on those as my ds has had them since he was 4 (now 15)
Yes she does xxx
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Unread 8 Oct 19, 03:35 PM  
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aqualiv
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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
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Unread 8 Oct 19, 04:49 PM  
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jennaba
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Originally Posted by aqualiv View Post
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
Thanks so much for that, Ill 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? Shes 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
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Unread 8 Oct 19, 05:05 PM  
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Buggles94
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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!
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Unread 8 Oct 19, 05:09 PM  
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aqualiv
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Originally Posted by jennaba View Post
Thanks so much for that, Ill 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? Shes 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

Ds loves all of the rides and we ve never had a problem on any of them or the shows x
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Unread 8 Oct 19, 06:52 PM  
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As a side have you updated travel insurance?
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