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Old 30 Nov 20, 11:27 AM  
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Beddy666
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Join Date: Jun 14
Baby with epilepsy

Hi guys,

Not been on for a while, was snooping last night to see on my topic above.
Weve got an 8month old Theo whos got several types of epilepsy developed at 2 1/2months old. Hes 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 shes 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 its possible but obviously challenging, are the parks/hotels accommodating for problems etc?

Just looking for some hope to know its something to work towards...

Thank you for reading

Edited at 11:28 AM.
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Old 30 Nov 20, 12:57 PM  
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BarryandCaron
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Our youngest DS suffers from a severe epilepsy syndrome along with ASD and severe learning difficulties. These started when he was 30 months old. Hes now 28 and weve been to Florida numerous times with him.

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

Im sure you will make wonderful family memories.
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Old 30 Nov 20, 01:17 PM  
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Bootrip2
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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
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