Here are some suggested organisations that offer expert advice on SN.
We haven't been on holiday with DD1 since the fateful episode when she was 9m old which pretty much started it all.
We're planning to spend a week or so in France this summer. We're going down to my parents' house there (which will make a lot of things easier) but I've got no idea about travelling with a SN kid. My head is full of the usual packing-with-children stuff (passports, travel cots, car seats, sterilisers...) but I'm wondering how DD1 is going to cope with the airport, the queues, the flight... (OMG. The flight. The flight.....) She's 2 years old, very mobile but falls over constantly and hurts herself, functionally about 7-8 months, extremely restless, no interest in books or toys, just rushes around chewing the furniture really. Screams if bored. Very high pitched. Fortunately the windows in planes are plastic or I would fear for our safety at altitude. So am not expecting a barrel of laughs.
But I'm determined NOT to be trapped in this country for the rest of our lives. Grrrr!
What do you all do when you go on holiday? Any tips? Any funny (or ghastly) stories to share?
We're seeing her Neurologist soon, so I'll ask him. But it may be difficult - she has severe Epilepsy and is on 3 or 4 AEDs which mean that you have to be really careful with sedatives.
The other thing, of course, is that if the sedative works we might consider using it for the whole holiday. . Joke! ...... I think ....
But maybe you could have the whole bottle yourself then you won't know what goes on on the plane!!!!!!!!!!!!!!
seriously I remember when we first used Phenergan, I was so worried, although Ellies seizures had stopped I was worried in case she had one but whilst sedated and I wouldn't know
Maybe worth asking about though
ah well it's hard really. As if you hadn't guessed that already!
My dd with SN is a bit of a routine freak and seems to get scared of all sorts of stuff - I've flown with all three children on my own a few times and had to spend an entire flight calming her down because she hates sitting on a seat without being able to put her feet on the floor. * sigh *
Then last time they didn't give us the pushchair back when we got off the plane (even though I'd waved dd's blue badge at the check-in lady and impressed upon her that I must have the pushchair back at the plane door) so I kicked up a stink there and then and eventually they picked us up with one of those golf cart things.
I guess in your case good sedation would be a fine thing? And letting everyone know that your child has SN so that they are a bit more helpful and understanding - you have just as much a right to go on holiday as other people.
The only way we can fly now is a night flight, our ds has been everyones worst nightmare on flights, cabin crew have actually moved other people from around us! but our last flight was a night flight. kept him up all day let him run around in the airport & then gave him a dose of piriton (which he takes sometimes) & he slept the entire flight.
Hi, Try not to worry too much. My son is 3yrs old and has a very rare epilepsy syndrome, which means he is quadriplegic, unable to eat and drink, reg blind and has up to 100 ish seizures per day. He is currently on 3 meds for his seizures, and another 6 per day for other things. we have to have emergency meds most days as well. We have travelled to spain, portugal, new york, germany, france and lots of other places. Yes he has fits on the plane, and will sometimes vomit and aspirate, but he might as well be having fits in New york as having them at home. This year we go to Rhodes on the 26th july till 9th august, then to Atlanta Georgia on the 22nd august.
I think the key is to try to relax and accept that things may go wrong. we always ring the airline and enlist their help before we fly. This is essential for Harry cos he cant sit up and needs his own special seat. We also have to carry, suction, 02, and a feed machine. We always get on first, and get off last which makes life easier.
As for sedatives, Harry has always had them. He was prescribed vallergan by the consultant when he was bout 18mths and sleep became a problem, he then progressed to clhoral hydrate. We havent found the sedative had a negative affect with any of the meds he has had and he has had about 16 in total(his condition is resistant to AEDs and none of them work for him). But i would speak to your consultant because if we have learnt anything about epilepsy its that it is a very personal thing and different people react in different ways.
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