Daughter has started at residential school - won't take meds & I'm very worried

[lottieandmia]

My daughter is 15 and has severe autism and also epilepsy. She developed epilepsy at the age of 8 and has been on epilim ever since (it's the photosensitive kind)

The background is that if for any reason her epilepsy meds don't work, she becomes very aggressive (much more than usual), impossible to engage with and also extremely self injurious.

She has been at an independent school for children with autism for a year and moved into the residential part of the school about 5 weeks ago.

All was well and she was settling in great until she suddenly started refusing her medication. She started off refusing the epilim but is now refusing everything else as well including risperidone which she's been on since she was about 10.

The school say if she chooses to not take it that's her choice and there isn't anything they can do about it. But I'm really worried because this week I've had an increased number of emails which have to do with her violently attacking staff. I have told them that in the past she becomes violent when the epilim is not working.

I have emailed the school nurse and said I think she needs an EEG. In the past if there is any epileptic activity she usually becomes very aggressive and there is a kind of build up to a seizure.

Does anyone have any experience of this situation? Usually I would post in SN but I'm posting here for traffic because I'm so worried.

Does she have a social worker? Care staff are very reluctant to disguise medication in food and drink because it's not ethical, but if you could find a way round this they should do it. A social worker or GP may be able to help. Perhaps the GP or her paediatrician could give permission for the meds to be in liquid form and disguised in food?

Obviously they need to find some ways that are less underhand but if she is going unmedicated she is even less open to persuasion and better ways of helping her take the medication

I see her refusal to take the meds as a reaction to going residential. You say she was settling in well but maybe the reality has set in now and she wants to come home and is acting out. Is coming home an option?

Yes, Ice - I'm almost certain that is the case. It's likely to be her way of controlling her situation.

They have tried disguising it and that does not work. Her social worker is off until August 31st annoyingly. Nobody has given me an alternative person to contact.

As you say, she's going to be less reasonable anyway if she doesn't take it.

She has already been home to me and is supposed to be coming home to her dad tomorrow and me the week after.

However, if her behaviour is worse by next week I won't be able to have her home because at the moment if she attacks someone it takes 2 staff to get her to stop.

Hi Lottie this is a dreadful situation. I have an epileptic autistic child who he has done short spells of being residential. I would have freaked out if he refused his meds. think the best way round this is to try and arrange an urgent meeting. What are her fits like? Assuming she hasn't had a seizure since refusing the epilim? They can't force her but am guessing they have used all their skills to persuade her. Maybe if you had a meeting and she felt listened to ( if she is verbal). Can you think of any reason apart from not wanting to be there that might improve things for her?

She is verbal and I think she does have some understanding of needing the meds but she does have a history of this sort of behaviour from a young age - refusing to move, refusing to eat etc if something bothers her. I am concerned that they haven't been firm enough with her about her needing to take it. One time I visited and they seemed to have an attitude of she seems to be fine off it. That's incredibly stupid because epilim has a cumulative effect.

She will eventually have a seizure, after a build up of increasingly aggressive behaviour and (ultimately) not sleeping. Unless of course she has grown out of it which is unlikely.

It's a nightmare and I really did expect them to be able to deal with this sort of thing better. Her placement will break down if she continues to go unmedicated and then she'd have to go to another school.

She normally has absences and will eventually have a tonic clonic seizure - they last about 45 seconds.

They think she seems to be fine off it?
Are these people qualified to be responsible for a child with epilepsy?
No wonder you are worried!
Make sure you put all your concerns in writing. Including a summary of every conversation you have with any staff member.

Is there a doctor attached to the school or can you try and contact the senco or maybe get hold of the admin person who deals with her education health plan and say you want an urgent meeting with all professionals involved both health and education. I am guessing this school if not near where you live. These places at residential school are few and far between if she leaves there there might not be another option.

Is there a doctor attached to the school or can you try and contact the senco or maybe get hold of the admin person who deals with her education health plan and say you want an urgent meeting with all professionals involved both health and education. I am guessing this school if not near where you live. These places at residential school are few and far between if she leaves there there might not be another option.

I have contacted social services today and said as far as I'm concerned this is an emergency situation. At the moment the school nurse is in daily contact with the doctor and has said the doctor is going to contact the epilepsy team. I've written emails with all my concerns and views in. I've also said that she will eventually have a seizure it's just a matter of when. I have said that she should not go swimming or have baths at the moment because of this.

There is another school that she could go to which we considered because this school has had problems with its Ofsted. I had wanted her to stay at this school because she had been doing very well there and they have apparently been working hard to fix the issues set out by Ofsted. She is also in a house with only one other child. The other school is the only one fairly local though. If not there, we'd have to look much further afield.

Tonight she is going to be with her dad so I'll see what he thinks.

It does sound as tho she would be better somewhere else - they should be taking medication more seriously
Hope things improve soon - sounds very stressful all round

My mum seems to think there is legislation where if someone's a danger to themselves and others they can be held and made to take the medicine.

I personally would support this being done even if it's obviously not ideal because the alternative is for her to not take it and for her to be injuring herself and other people severely.

I've spoken to SW this morning. She says residential schools are not allowed to hold a child for medication but she did say she thinks they possibly are not trying hard enough or being persistent enough with dd.

I personally think that even though they can't make her take it they should not go around saying that in front of her because of course she won't take it then.