Floppy, unresponsive child for ten minutes???

[zippytiptoes]

My DD (3 yrs old) has epileptic abscence seizures. She has not responded to Keppra or Epilem and is currently on Lamotrigine which isn't doing anything either to stop the seizures. Her behaviour is a nightmare since she started these meds and we are at our wits end - no seizure control and vile behaviour, coupled with sleepless nights!

We had a rush visit to the consultant yesterday because our daughter had a strange 'turn' at nursery. The same thing happened on Friday but for a much shorter period. She basically just shut down, like she was asleep, with her eyes tightly closed but with rapid eye movements underneath the lids - like when she has an abscence, only her eyes were locked shut! She was totally floppy and had to be supported by staff who weren't sure what to do. They tried shouting and shaking her gently because I think they were quite scared, but she didn't rouse at all. Yesterday, she was non responsive for ten minutes...I saw this episode yesterday but not on Friday, so I know that the staff weren't exaggerating. She was totally unaware that I was there or talking to her. Yesterday her temperature was 39 but it was normal on Friday and the same thing happened but only for two minutes. It was quite upsetting to watch although the staff had explained what had happened so I was aware of what to expect.

The consultant seemed quite blaze and said he doesn't hink this is anything to do with her epilepsy, but I don't know what else it could be, especially as it's happened twice in a row. Does anyone have any ideas? Has this ever happened to anyone else's child?

Yesterday, he put her on Ethasuximide as well as continuing with the Lamotrigine. We have an appointment with a neurologist in three weeks and I don't know if he just wants to wait until then to check out these other odd 'turns'. Also, how long will it take for the new meds to get into her system? Consultant thinks it's very strange she behaves so badly, but everything I read says it's quite common? Don't know what or who to believe!

I feel really sorry for the nursery because all the consultant has said is that should it happen again, just put her in the recovery position. I think they were quite scared and other than that, I don't really know how to reassure them.

I'd be concerned and ask for a second opinion.

Bad behaviour on these drugs is pretty common unfortuanetly. I think we have tried them all! Personally we have been told if a seizure lasts more than 5 minutes an ambulance should be called. dd's seizures also caused her oxygen levels to drop so we now have oxygen at home.
Is he going to wean the lamotrigine given its not working?

Is he a paediatric neuro or a 'normal' paed?

I would also get a second opinion, we are just starting down this road with DD (18mo). Do you have midazolam? We use it to bring DD round when she has a seizure, so far they have all been related to extremely high temps but she doesn't come out of them and as you know long seizures can be damaging.

I am worried we will be offered something which changes her behaviour or makes her sleep even worse. I hope you get answers soon.

Thanks. Kal, the peadiatrician is just a normal one, but the head of deaprtment. The neuro she is being sent to is, I think a PN. Do other people think that this 'turn' was a seizure and related to the epilepsy? I know it's difficult to judge, but I think it's a bit strange just to ignore it. He said he wanted to get the normal absence seizures under control first. I find it alarming that he didn't find it alarming especially as it's now happened twice.

I would certanly seek an other opinion. I have experience of caring for adults who have epilepcy but not children, however as someone else said at 5 mins an ambulance should be called.

I have witnessed seizures like this so it is possible that it is her epilepcy. I would be asking the nursery to impliment an epilepcy policy or procedure for your dd and advice them to call an ambulance at 4 mins to be on the safe side, In our place we worked on a very strict policy although medical info would suggest 5 mins we implimented for a decission to call an ambulance to be made at 3 to 4 mins to ensure that staff who where maybe inexperienced or easily flaped could compose selves and co ordinate someone to stay with the preson and another to call an ambulance. I would also ask them to record in detail what has happened. this will help you give as much info to the consultant.

you could make a simple chart, activity before, describe seizure, length of seizure, describe recovery and lenghth of recover, activity after seizure.

i ment to add your dd may be having clusters of seizures in that 10 mins, but without recovering between so going straight into another, that would explain why so long. that could lead to complications so i would definatly get this looked into sooner rather than later and in the mean time be calling an ambulance if this happens again.

agree with others get 2nd opinon from doc.
get epilpsy policy sorted at nursery, they should have done one anyway for their insurrance and to comply with ofstead regs.

agree with others that emergency meds need to provided, rectal diazapm ? (sp?)
agree that times and recovery posisiton , and ambulance should be called.

have young family with severe epilipsy, your child is ringing a few bells with yr description .

ask to be reffered by yr gp to GOSH or royal free.

keep a seizure diary for when you see the neuro and it really should be a neuro dealing with epilepsy, not a general paed.
We now call an ambulance straight away as the city traffic is so awful. dd is now 8 and her seizures are now always life threatening (oxyfen drops etc). I'd rather feel a plonker with paramedics than risk anything. the nursery also need a seizure management plan drawn up and if necassary training in emergency meds like oral midazolan or rectal diazepam (given after 5 mins)
hat 10 min seizure doesnt sound like a straightforward absence to me. They are usually short.