Baby with epilepsy

[Beddy666]

Hi guys,

Not been on for a while, was snooping last night to see on my topic above.
We’ve got an 8month old Theo who’s got several types of epilepsy developed at 2 1/2months old. He’s currently on 3 different anti seizure meds that will be weaning down to two over the next few weeks and introducing Keto to help control his spasms.
Me and the wife have been discussing the future and she’s adamant we will never get back to an abroad holiday or Our favourite happy place Orlando.

Anybody experience with this, and any experiences going with a baby/toddler/child with epilepsy and global development problems.
I feel it’s possible but obviously challenging, are the parks/hotels accommodating for problems etc?

Just looking for some hope to know it’s something to work towards...

Thank you for reading

[BarryandCaron]

Our youngest DS suffers from a severe epilepsy syndrome along with ASD and severe learning difficulties. These started when he was 30 months old. He’s now 28 and we’ve been to Florida numerous times with him.

The main thing is to keep them hydrated, meds regularly and not to overtire them.

I’m sure you will make wonderful family memories.

[Bootrip2]

DD is 11 now and has epilepsy, but only had 2 hospitalised seizures. She does have alot of absences though. All i can say is it is all still very new and scary. With the correct meds kids can stay seizure free. You will learn to read the signs and hopefully have a near normal life. The downsides to travelling, especially to USA is the travel insurance. Nearer the time when you are ready you can look around for this but i would wait until you are a few years seizure free and away from hospital admissions. DD first fit was at 5 so not a baby, but still a scary time as they couldnt find reason for it. There may be lots of scans investigations etc along the way, but you will hopefilly get there. X

[sophie1405]

I found the parks and things are very helpful, i am epileptic i was diagnosed at 13 i got Juvenile myoclonic epilepsy (JME) so have generalised tonic clonic sezuires, nocturnal seizures and absences. i have used the DAS and GAC passes at disney and universal and explain about my seizures, i get my fits when i am tired, stressed and anxious. (What a nightmare this past year has been for me). If you are staying onsite at disney they will do everything they can for you to accommodate you, I also let the airline know that i had epilepsy (i do take medication to control it which is sort of helping) just so they are aware about it.

Insurance may be a little more expensive than not having epilepsy but it is important to have it. i have been hospitalised twice out in the states for epilepsy (1. when i had a fit on a plane from salt late city to new york and 2. when i was at summer camp out in america) the bills can add up but my insurance covered everything.

I hope this helps

x