emergency medication (buccal midazolam)

[julie-2]

Hello everyone have not posted before, but would really appreciate some advice especially from parents with children whom have epilepsy.

 

My daughter Sian is 6years old and has occipital lobe epilepsy, (diagnosed 2.5 years ago), she is currently on 250mg of lamotrigine. She is also diagnosed with autistic spectrum disorder, and attends a special needs resource unit attached to a mainstream school.

 

I'm hoping someone can answer this question for me regarding my daughter's transport to school, The Local Authority provide a minibus with an escort who is first aid trained, to take a group of around 6 kids each day.

 

Last week I was informed the escort would be leaving today and will be replaced by a new lady next week. The prior escort was St John's Ambulance trained and was willing to take on board my daughter's buccal midazolam if she had a tonic clonic seizure lasting 5 mins or more, and she said she had no problem about having to give her the meds if Sian had a seizure.

 

Well I have just been informed by the Local Authority that they were unaware that the escort had agreed to give the medication to Sian, and that she had not had the relevant training to do this. I had already discussed this with the escort when my daughter started with this transport last year, and gave her written instructions on the doseage and how long to wait before giving the meds, she was fine with this.

 

The Local Auhtority have now said that the new escort will not be able to take on board the buccal midazolam and that if Sian has a seizure then they will either bring her back home, to school, or call 999 depending on where they are at the time. As I have it kept at home, and so do the school. They are trying to say they are not covered if anything should go wrong if the escort administers the meds ie she gives the wrong dose, or not enough.

 

I dont understand why they keep telling me she is first aid trained and that everything should be ok, well if she's first aid trained what's the point when she's not able to use it or do anything for my daughter.

 

I now have to decide do I send my daughter on the transport next week knowing there is no emergency meds on board, or do I take her myself, obviously I have to take into account that my child has got used to a set routine and she can become very distressed with change etc. (known autistic difficulties).

 

Generally I am a worrier anyway, when it comes to Sian's epilepsy, but just having the peace of mind that they have this medication on board helps me feel a little calmer knowing if anything happened, then they could give her the meds.

 

Waiting to speak to Parent Partnership about some back up and if they can suggest anything.

 

Sorry for rambling on.

 

Julie-2

[Mother in Need]

First aid training doesn't cover giving medication (except for aspirine during heart attack). And in this age of sueing, no-one dares to hand out meds. I had great trouble at school when my youngest needed a liquid medication before lunch, it took weeks to sort out.... And an insulin injection for my AS son during school time is a complete no-no....

 

Ambulance personel are allowed to medicate though, aren't they? Could you maybe make the arrangement with the transport people that if your son has a seizure, that they ring an ambulance straight away? If he doesn't need the meds, then they can just leave again, but if he does need them then they are there...

 

I'd be reluctant to drive your son to school yourself, that way the LEA will never really do what is needed, and it will make your son even more dependent on you, and will give you less time for yourself which you need.

[carrieq]

I teach in a special school and our pupils are transported in. The vast majority of kids are on emergency meds for seizures and none of the escorts are trained, they go by the advice you have been given, either call 999 or get to school. They are told what to look out for but no formal training. Luckily nothing has happened but it is something that I worry about!

Carrie

[aro]

As a teacher we were trained to give Epi-pens for allergic reactions, but I think this was mainly because of the speed at which these reactions can be fatal and it is adrenalin which is impossible to OD with from an Epi-pen. As you know midazolam always has a slight risk of respiritory failure, I would guess that is why people will not administer it and prefer to get the child to hospital (or parent)

 

(BTW, you know me as annao on NSE forum )

 

A x

[julie-2]

Thanks very much more your replies everyone.

 

Looks like I shall just have to hope nothing happens on the transport, and if it does just wait for them to call the ambulance.

 

Nice to hear from you again annao.

 

Julie-2

[krystaltps]

My DS2, R, has epilepsy and used to frequently go into status. We keep Epistatus at home, and at school. All school staff have had training in how to administer his meds - even the janitor, secretary and dinner lady. However it is not policy, and is not covered under insurance, for escort staff to administer meds. Not sure why though, probably something to do with being outwith the school grounds.

Also, there is quite a bit of lee-way with status. We were told to get the meds into R within 15 mins, but preferably less than 10 mins. Therefore, I would try not to worry too much - as there is a good chance the driver will be either able to get her to school or home during that time (depending on the length of the journey?), or get an ambulance.

I would check though that the escort's training covers procedure for during a seizure - you know, recovery position, moving items out of the way, etc.

I know how you feel though - cover every possible scenario and it might not happen... that's my motto.