Advice needed: sending child with epilepsy on school trip

[schooltripworry]

Hello I dont come on this forum very often but I could do with advice from any parents of children with epilepsy who attend mainstream schools.

DD's seizures dont happen that often so I am struggling to get the school to take me seriously when I am asking for some extra support and supervision for her. I think they feel I am making a fuss. But I worry that if she doesnt get enough sleep etc and gets worn out and over excited on the trip, she will have a bad seizure and she could be in bed and no one might know...anyway it is my fear. Her worst seizures tend to happen at night.

I was wondering what other parents have done and have asked the school to do for their children when they go on school trips for several days. How much extra support should I expect? The epilepsy nurse is going to talk to them about seizures and administering emergency medication and they think that provided they have had this "training" they will be fine.
But I would like them to take active steps to ensure she is supervised more closely, checked on in bed, rested/given rest breaks if she seems tired (which requires someone to notice if she is tired), supervised in the showers, and make sure she goes to bed in a quiet room where someone is likely to notice if she has a seizure. Am I expecting too much?

I would welcome hearing of anyone's experiences on this. Thank you.

[supermum98]

I think you should ask for 1:1 support and get letter from neurologist to support. I think you then quote that in order that they don't breach the DDA, they need to make the trip accessible to her by providing this support. Get school nurse to help with risk assessments and do training of staff.

I'm having problems as well with this, though slightly different. My ds
suffers from epilepsy. He tends to only have petit mal. or transient abscences, nevertheless my sons 1:1 TA says she doesn't want the responsibility of going with him on a day trip to France, because she is worried predominantly about his epilepsy, despite being a qualified nurse I hasten to add. They are not worried about his pd as he can take a wheel-chair. The language dept are supposedly keen to take him and have asked that a parent go in the event they can't find another member of staff. He won't go with a us -not cool, he is in year 7 by the way. Parent partnership said that this is discrimination and they shouldn't be asking us to go. They said that if he can't go then nobody can go. As new parent at the school, very difficult to go, citing the DDA, but everyone has gone quiet on me and my son getting agitated that he doesn't know who will go with him.
Also TA mentioned unpaid overtime was a problem as its a long day. But apparently school are meant to cost up trip with 1:1 included and divide cost up between everybody going. This isn't the first time this has happened to me and I'm fed up with it, but this is the first time his epilepsy has appeared to affect him going on a trip.

[kissingfrogs]

It's a really difficult one. My dd1 has absent seizures, controlled by medication. Juggling the dosage of meds with growth spurts means a risk of breakthrough seizures and as dd1 has the automatism of unconsiously walking off that can be potentially fatal if near a road.
What can you do? They have to live life as near normal as possible.

schooltripworry: find out about the sleeping arrangements - usually a dorm type, so unlikely your dd will ever be on her own except in the bathroom (she knows never to lock the door?). If she has a good friend can she ask the friend to watch out for her/watch the door for her in that circumstance. So long as the other children have been educated as to what a siezure looks like, they'd raise the alarm if one happened, and so long as staff know exactly what to do then dd should be in safe hands. You're right to worry though about the tiredness/rest-break issue as this is important to minimise the risk.

supermum: sounds like the TA just plainly doesnt want to go regardless.

[anonandlikeit]

before any school trips they are meant to complete a thorough risk assessment & that should take in to account any specific medical conditions of the children & how they will amange them.

I would ask for a meeting put to them your concrens formally and ask them to give you proper responses.
Sometimes just by making things a little more formal they can up their game a bit.

[schooltripworry]

Thank you for the replies. I have asked the school for a formal meeting so will see what they have to say. If I know of how other people have managed then that will help me know if my expectations are reasonable so if anyone has any more experience of this, do let me know.

Supermum, I am sorry you are having problems too. I hope they work something out and someone will step forward to help.

[newlife4us]

schooltripworry - i have exactly the same worry regarding my DD's first residential school trip this September. (It's only 3 nights and 40miles away.)

I spoke to the head about it. She has advised me that they have had similar issues in the past and that the centre they are going to are very accommodating. She has suggested that i could arrive late in the evening and stay overnight and leave early the next day in a seperate twin bedded room with DD or alternatively collect her in the evening and return her the next morning. These options may be a little tricky as i have DS at home and have to wait for DH to get back from work in London. DH has suggested that he make arrangements to work from home for a couple of days.

My DD will be in yr5 when the trip happens,so this arrangement shouldn't be too embarassing for her.

I'm not sure how old your DD is or how far away the trip is from your home etc, but maybe you could discuss a similar arrangement with your HT?

[schooltripworry]

newlife4us - my DD is a similar age to your DD and probably would not mind me being on the trip. But for me that option would be a last resort as I know I have to let go at some point and the independence aspect for her would be less. But if school can't agree to provide enough support, I might have to ask if I can go on this trip.

Unfortunately it is a long way away - somewhere in Wales where I have never been - and no where near a hospital etc - even an ambulance would take a while.

[supermum98]

schooltripworry, it might help to go and look at the venue before sending your child. I wish I had done that now as the risk assessments did not pick up that my ds was using an unsafe shower (he had a fall) and the building had uneven floors that were not safe for children who had unsteady balance, these caused him falls. It could put your mind at rest on the epilepsy side too as you can visualise things.

Feeling very upset tonight as latest on my school trip problem (day to France) is that Head of Department is hoping she will be able to 'twist a few arms' to get someone to 1:1 him, but anticipates no-one will want the responsibility of 'squirting a few drops on midazolam in his mouth, dialling for ambulance and observing' in the rare event he has a minor abcence/petit mal', if you remember his 1:1 TA doesn't want responsibility either, despite being a qualified nurse. MY GOD THIS IS THE NATION THAT FOUGHT HITLER OFF. This is so bloody depressing and my hormonal 13 year old wouldn't be seen dead with us there. Apparently I have to impress it upon him that he will need to compromise. Does this pathetic attitude apply to kids with diabetes also? I'm sorry I'm probably being unfair to them, but I'm sick to death of everyone treating my ds as if he was an invalid/object of pity.

Mind this is after having him sent home this afternoon by TA because he had a dizzy spell, which would translate as minor absence. He came home bright as a button, bags of energy and was more than capable of doing some work.
This happened about a month ago same thing, completely normal after a bit of lunch. I'm livid as he already misses plenty of school for appointments, and as we left TA said to him, don't come in tomorrow if you don't feel up to it!!!! Will start another thread about this as want to know what my rights are. Have good weekend, I will if I can get over my anger/frustration, although very humbling to see more severe problems other parents are having to cope with on this site. Take care, and wishing you peace.

[schooltripworry]

Supermum that is awful. My DD has absences at school but the teacher barely gives them any attention at all! We dont need to use the emergency midazolam for those. Every now and then she has bigger seizures and sometimes really major ones and these do need emergency attention.

I have been told about someone whose son has diabetes who had to accompany her child on a trip. So it seems this is often the solution I am sorry to hear.

I am trying to sympathise with the teaching assistants who might not feel able to cope with the responsibility of emergency treatment. It is a shame but I am waiting to see what school say next week. I am liking the idea of visitng the site too - just need to think whether I can find time/money for such a trip.