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Epilim prescribed, but we're not even sure ds is having seizures?

(17 Posts)
hazeyjane Tue 30-Oct-12 22:44:10

Ds has had several episodes at night, which seem like choking - he screams, a kind of strangled scream, makes gargling noises in his throat, which seems swollen, his eyes are half open and blood shot, he is often stiff, his mouth droops om one side, they last up to 10 minutes and then stop suddenly and he sleeps, he has had an eeg which was clear.

He had one last week, whilst we were away. This one seemed a lot more 'seizure like' in that the mouth droop was more noticable, he was floppy on one side and stiff on the other, afterwards when he was asleep, one eye was very droopy and open. he was exhausted the next day and slept for a lot of it.

I phoned his gp requesting an appointment, and his paed. When i saw his gp tonight, she had spoken to the paed, and he thought that considering his history, it is in all likelihood a seizure and that it would be best to start him on epilim.

Our gp, was surprised by the suddenness of this decision, as am I. Has anyone else had epilim prescribed for their dc, when seizures aren't confirmed? I have worried myself by googling and have seen the possible side effects of epilim. Also i feel as though if we are going to have this prescribed, we need to at least talk to the paed about the 'seizures' - what are the potential dangers of ds having them? what sort are they? will he grow out of them? etc

I am so thrown by this that I don't know what to think (which is probably why i am rambling - sorry!)

Any thoughts would be welcome.

zzzzz Tue 30-Oct-12 23:22:02

I think it is a wise decision. 10 minutes is a dangerously long seizure. Epilim is a common drug with well documented history.

EEG will only show recent seizure (I think maximum 12 hours, but normally less) so negative only means he hadn't had one I that time scale.

The problems from side effects of medication are not nearly as dangerous as the results of prolonged seizure.

Dangers of having seizures, statis, brain damage, death, accident caused by seizure (these are risks not given please dont freak out but 10 mins is a big seizure).

They sound like complex partial seizures??? I'm not very good at the whole descriptor thing.

50% of children outgrow childhood epilepsy, severity does not effect the likelihood of growing out of it.

Epilim will made dd very hungry and she also raged. sad

If ds has a seizure that lasts for more than 5 mins he needs to go to hospital by ambulance. I call before that point because it takes about 3 mins get through and them to dispatch etc. that still leaves us fitting till the ambulance gets here. They turn the lights on.

Epilim is a good drug. It doesn't work for us, but I would think this is a good plan.

mymatemax Tue 30-Oct-12 23:29:30

Hazey, have you managed to record the episodes. We had a long debate with ds2's paed when he was about 2yrs old re epilepsy meds.
In all likelyhood he did experience a period of nightime seizures which went unmedicated
His daytime episodes which on videoing and seen by the paed was put down to posturing/movement control problems

We only came to the decision not to medicate the night time episodes as they were restricted to a short period when ds2 was falling asleep, he was recovering quickly himself, he was havng no lasting effects or carryover in to the following day, was fine on waking and didnt seem to be hindering his development (although difficult to tell)

Whatever you decide, do it jointly with the paed and make sure all your questions are answered.

zzzzz Wed 31-Oct-12 00:02:02

Young epilepsy have experienced epilepsy nurses you can talk to on the phone.

Try not to worry. If you find the right drug it is manageable.

TheLightPassenger Wed 31-Oct-12 08:05:16

I would try and get through to the paed consultant or one of his registrars via secretary to ask to discuss this further, sounds like you need more explanation and information, especially about the point zzz raised about if/when to call 999.

hazeyjane Wed 31-Oct-12 09:26:48

Thankyou all.

I am a bit wrecked by this, because as usual we are in a murky grey area of, is it or isn't it. I will call the paed's secretary today, and have googled his email (I hadn't realised that he is the epilepsy specialist at our local hospital) because we have got a little bit of film of it, which i could try and email. The film just looks like ds screaming tbh, with me holding him and trying to pull his tshirt away from his throat, but you can see the droop at the side of his mouth.

God I hadn't even thought of brain damage. I had only thought of the dangers of hurting himself - but he has only had them at night. Or of him choking.

The 10 minutes is the gargly screaming, and I don't know if that would be the seizure or the bit after the seizure, IYSWIM.

I will call the young epilepsy number, as well.

SallyBear Wed 31-Oct-12 10:28:16

Hazeyjane, one of my friends has a DS who suddenly started having seizures. He was 4. No warning whatsoever. She dialled 999. He had the EEG etc, they found nothing. Then he had three more. Then the hospital took it seriously and put him on meds. He seems to be doing ok, and she says that he is still her little boy. I don't see her often so I can't confirm what medication it was, but Epislim (sp?) sounds familiar.

starfishmummy Wed 31-Oct-12 10:51:11

EEGs don't alwys show anything, DS's have always been clear but there is no doubt that he has had seizures.

They are currently under control on Epilim and he has no side effects from taking it.

As others have said, you need to discuss with his paed how to manage this (whatever it is) at home, so when you should dial 999 and whether or not you have emergency medication to carry with you. If he is at nursery or school or you leave him with anyone then they need to be told what to do as well.

LateDeveloper Wed 31-Oct-12 13:22:09

Hi Hazey, it sucks when your child may possibly have a new medical issue so hugs. I second getting as much video footage as you can and sending it - your consultant will be able to spot all sort of things that you can't.

Ds didn't have any horrible side effects on epilim (for absence seizures) but it did make him a bit hyper in the day (not at night thankfully). Unfortunately epilim didn't control the absences so we are now on lamitrogine which doesn't work completely either and we are upping meds now.

hazeyjane Mon 12-Nov-12 13:20:06

Just wanted to update everyone.

had a phonecall from ds's paed's secretary this morning saying that his paed could see us this morning, because they had a cancellation.

He looked at the film and said that his instinct would be to say that ds was coming out of a seizure, he could see the droop of the eye and mouth, and the fact that one arm seemed to be moving ok, whilst the other arm hung by his side. However he said he could understand our reluctance to start ds on epilim, especially considering ds hasn't had an episode for several months, and previous to this they would happen only every few weeks/months. But he said that if it happens again, he wants us to call an ambulance, so that ds can be observed and given emergency medication.

He also wrote a letter to the neurologist that ds saw last year, asking for ds's mri to be reviewed urgently, and querying whether another one should be done.

mumof2turds Mon 12-Nov-12 13:23:39

Glad things are moving along for you and that you have some advice on what to do for long seizure next time. Good luck with the MRI sounds like pead is on the ball

SallyBear Mon 12-Nov-12 14:14:06

Fantastic Hazeyjane. I'm glad that you got seen so quickly. The paed's secretary obviously realised that February was a bit long to wait. Hopefully the paed and the neurologist will have a discussion about DS's MRI results and whether a more up to date scan would be better. Will they do an EEG as well re. the seizures?

OwlLady Mon 12-Nov-12 14:19:33

does he wet and soil himself after/during the seizure?
is he sick afterwards?

I know all children are different but that is a tell tale sign for our daughter that she has had one. She is also very vivid the day after

hazeyjane Mon 12-Nov-12 19:10:42

He hasn't soiled himself, and I'm not sure about wee, as he is in nappies. He slept for most of the day after.

Sally, I think the idea is that if he has another one and we go straight into hospital, then he would be able to have an eeg.

He wants to see him straight after Xmas, he was a bit nonplussed as to why an emergency appointment hadn't been a bit easier to make.

Have just packed up a hospital bag to put at the bottom of the wardrobe, so that we are ready if it happens again. Felt like crap doing it, but it is done now, and dh has said he is going to cook a lovely tea and I am going to forget all about it, until it is needed.

zzzzz Mon 12-Nov-12 20:10:22

I work under the assumption that the more you prepare the less likely you are to need it.

Put hand in nappy to see if warm (yik but effective). Keep latest letters etc in the bag.

So glad you have a plan that sounds safe, you have been on my mind.

Honk honk.

SallyBear Mon 12-Nov-12 22:53:01

Hazeyjane that's what happened to my friend's DS. She would ring the ambulance and then they ran a couple of EEG tests once her DS was at the hospital. Hopefully that bag will not be used very often. ((Hugs))

hazeyjane Wed 14-Nov-12 20:00:43

Aah I has forgotten about sticking the hand down the nappy! Thankyou again for the disgusting/handy tip.

Thankyou too for the hugs. I have felt a horrible sense of gloom hanging over me all day thinking about that bloody hospital bag. Ds is not himself, and I have the most horrendous pmt, so hugs is nice thanks

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