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Ds had a new type seizure - worried meds are making his epilepsy worse

(47 Posts)
DisAstrophe Mon 13-May-13 10:21:02

Ds is 7 and has been treated for absence seizures for 2.5 years (he's probably had absences for a lot longer). We've never been able to get control of the absences for more than a couple of weeks at most.

Yesterday he had a new type of seizure. He was sitting at the table drawing when we noticed that he was staring into space. He was smacking his lips and his head was slowly turning from side to side. He looked like he was asleep and when dh passed his hand in front of ds's eyes he didn't blink. This lasted two or three minutes.

Afterwards he was very tired and we put him on the sofa to sleep. Stupidly I woke him up after 15 minutes as his tea was ready. He was hard to wake and then was crying saying his head hurt and eye hurt. He was pale and felt sick. We let him go back to sleep and after an hour he woke up very hungry. He took a while to perk up but then was eating and very energetic and chatty.

He has been also been having even more visible absences -with three or four in rapid succession and once or twice and nearly fallen over.

School say something very similar 3 weeks ago and I had to go in to pick him up. They also called me last week twice because they are worried as his energy levels are so variable at the moment and they are seeing so many absences clustering together.

I've emailed his doctor to ask for advise. But would also welcome any views on whether this could be caused by us slightly increasing his medication 2 days beforehand. He's been on lamotrigine for over a year now and is on a medium dose for his weight.

Was very scary seeing him so upset.

Fluffy1234 Mon 13-May-13 10:28:33

Sorry I have no advice but big hugs to you. That must have been so scary for you all. My DS also has epilepsy xxx

DisAstrophe Mon 13-May-13 10:33:56

It is scary. School keep asking me what we're doing about the epilepsy and I feel so helpless. I trust the Dr who is very good and v responsive. Ds is also on wait list for a referral to see the dr at a bigger hospital (tries not to completely out myself). But I worry that after 2.5 years with so little control that ds has an untreatable type of epilepsy.

LeonieDelt Mon 13-May-13 11:01:48

Message withdrawn at poster's request.

zzzzz Mon 13-May-13 11:13:08

There is NOTHING to suggest his epilepsy is untreatable. Be calm. However I am about tell you off. blush

A 2 to 3 minute seizure is serious and I think AandE would have been appropriate. (I call an ambulance as per medical advice). You must watch him afterwards.

Don't wake him post dictal, he will have a clonking headache and you could tip him into another seizure.

Call consultant (secretaries number will be on all letters), ask him whether to drop back down to previous dose.

Could he be coming down with something? If so (though in all honesty I would do it anyway) calpol or whatever you usually use to keep temperature down would be good supportive care, as would staying quiet, dressing cool, and no strenuous exercise.

How many meds have you tried? If he has never been fit free what do his Drs say about it?

Dd fitted for nearly 2 months, in clusters every couple of hours, we were on our 9th medication when we found the holy grail....the one that works. If/when it becomes less effective we have one more drug then keto in our back pockets. Dd is academic, seizure free for 18months and fabulous. It does happen, even to the very severe ones.

Be brave. HONK HONK HONK.

infamouspoo Mon 13-May-13 11:18:42

ds tried 9 medications and we finally found freedom in the ketogenic diet.

DisAstrophe Mon 13-May-13 11:27:51

Thanks leonie - can I ask why you think your epilepsy is not controlled at the moment?

zzzz - thanks four your comments. Absolutely lesson learnt about waking him - poor little man.

I did think afterwards about calling an ambulance but then thought they were just for when someone has a fit seizure or has a seizure of over 5 minutes.

I'm even more worried now. Do you think if it happens again I should call an ambulance? Should I advise school to do the same? The thing is on a Sunday night at my local a&e there would be no specialist - they would have monitored him and sent him home tired and hungry.

Don't think he is getting ill - he has got horrible hayfever at the moment though.

Dr changed just over a year ago. We switched from epilim (didn't work and made him hyper) to euthoxsimide for a few weeks but he was very emotional and it didn't work. Now on lamotrigine (doesn't work but he isn't too manic). Dr likes to up the dose slowly to avoid side effects which I agree must be a good thing.

That is excellent news about your dd. Ds also has gdd and asd but I think he would make better progress if we could control

DisAstrophe Mon 13-May-13 11:29:55

infamouspoo - that is great that the diet worked for you. I really hope medication will work though as ds loves his carbs and his food and would find it hard to understand why couldn't eat them(he has ASD and lds too)

infamouspoo Mon 13-May-13 11:31:48

I hope meds work for you too although the diet isnt hard and lots of people do it with kids with ld's, ASD etc

LeonieDelt Mon 13-May-13 11:44:45

Message withdrawn at poster's request.

BeeMom Mon 13-May-13 12:02:08

It does sound quite like a complex partial - and iirc, lamotrigine does not cover them.

I will be watching to see what the neuro has to offer - and sure hope that his energy levels stabilise once you get back on top of his seizures...

BeeMom Mon 13-May-13 12:06:11

And I think you were right in not calling an ambulance, but following up with the consultant. Fits longer than 5 minutes is a child with known epilepsy is the beginning time for response (and that is so that if they are still fitting by 30 minutes, they are hopefully at hospital by then - I kid you not). 2-3 minutes, while it seemed like an eternity, is not a crisis.

Poor puddin'. As for lack of control - absence are typically difficult to control, but to have them continue into adulthood is almost unheard of... hardly a bright side now, though

DisAstrophe Mon 13-May-13 12:20:17

Leonie - thanks for answering - I hope you find a med which suits.
Infamous - that is interesting to hear - definitely not ruling the diet out
Beemum - didn't know that lamotrigine was not for all type of seizures. A lot to learn. Actually hearing that absences are rare in adult is nice to know smile

2old2beamum Mon 13-May-13 12:51:36

DS has a myriad of seizures ranging from absences to full blown clonic tonic seizures. We now have Midazolam which we give after 5 minutes and can give a further half dose if still fitting after another 5 mins, this regime has saved many hospital visits BUT is quite scarey.
We do however live 30 miles from hospital.

Good luck I hope you have contacted his neurologist and have had some advice. I loathe epilepsy with a vengeance

DisAstrophe Mon 13-May-13 13:16:52

Thanks 2old. I will ask if we need other medications. I hate epilepsy too!

Hope this doesn't mean ds will have a problem going to the after school club or other places. We have a weekend booked at centreparcs and I was going to see if ds could attend the kids club for a few hours so me and dh could go to the spa but not sure now if that is a good idea.

Also worried about babysitting generally. There are only a few people we leave ds with and they may worry if there is a chance he could have a fit. What do does everyone else do for babysitting and childcare?

BeeMom Mon 13-May-13 13:47:20

I am not proud to admit this, but we leave Bee with her 14 year old brother. He has more experience with her and her "subtle" cues than anyone but Bee's dad and me, and we trust him implicitly. We don't do "long term" getaways, mostly just to run to the shops. If DS is not willing to watch her (he ALWAYS has the choice, and he is paid like any other carer would be) then she comes with us or we don't go. I try my best to schedule my errands when she is at school.

I can't give you advice about your DS as our situations are quite difficult, but I am sending you honks and hoping that things return to baseline long before centreparcs so you can have the break you need.

zzzzz Mon 13-May-13 14:54:12

Paraldahyde is our emergency drug for after 5 mins, but I would ALWAYS call 999 after 3mins they dispatch at 5mins.

I am assuming you a UK based?

If so it is massively in your interest to be admitted through AandE, as you are experienceing a new kind of seizure. Things are escalating and from what you have said your ds has never had adequate control. If you are admitted you "might" have to sit in hospital for 48hours, but you will be seen by a peadiatrician with experience of epilepsy. If like us they witness many seizures either the specialist from your regional children's hospital will come to you, or you will be transferred to his/her hospital. Either way you are likely to progress swiftly towards a better understanding and with a little luck effective medication.

If your consultant runs a weekly clinic it would be entirely reasonable o ask to be added to his list this week rather than waiting politely.

Leonie Topiramate does nothing for teeny girl, but Topamax works. To describe me as brand loyal is an understatement!

Are you medicating him for the hay fever? Could that be interacting? Could Hay fever be masking a cold? Dd doesn't get left with anyone, me Dh or twice when I was hospitalised my Mother. School are trained, bu otherwise she's my right hand girl. I don't really care though, I am still a bit clingy to her myself.

bee my 12 year old dd is a rock. I would trust her over most paramedics in a corner.

LeonieDelt Mon 13-May-13 16:36:37

Message withdrawn at poster's request.

2old2beamum Mon 13-May-13 18:52:37

Didn't realise paraldahyde was still available it was very effective but it stank! Is it still administered rectally?
I ?like Midazolam as it is given buccally difficult if the saliva is flowing!!

DisAstrophe Mon 13-May-13 19:41:41

Beemom I certainly wont judge you for that. At 14 I regularly babysat for even young babies and your ds will know his sister inside out.

My dd is only 4 but she is already brilliant with her big brother - perhaps not quite at the babysitting age though grin.

You and zzzzz sound resigned to not going out much but I must admit it makes me feel claustrophobic. I've always worked part time and also have a couple of people I feel happy babysitting my kids (family and close friends). I've already started a job working from home so I can be on hand if need be. Selfishly it would hit me hard if my little world got any smaller.

Well hosp dr has not got back to me so I'm extra grateful for getting support here. Will phone the secretary tomorrow and leave a message for him to ring me.

Also feeling grumpy because a different specialist involved ds' care has written a letter which makes no sense whatsoever and is actually the opposite of what both me and dh thought was said at our last appointment. hmm

zzzzz Mon 13-May-13 20:10:30

2Old still available, but rather a pain to get hold of (takes time to arrive, only dispensed through hospital, and goes off relatively quickly). We don't carry it anymore, but all large hospitals do. Medazalam doesn't stop dd. sad

Dis less resigned than realistic. I have another child with sn as well. It's complicated. Life does get small and sometimes headachey, but in our case we are lucky she has survived and is still herself and the harder times are still quite fresh in my mind. I am very grateful to be in my own home and able to shut my door on the outside world at the moment.

Correct the letter and send it back for him to rethink. It is important these things are right, and you both obviously took different things away from your meeting. Better to get it sorted and understand what's what.

leonie we don't use sprinkles but I think for dd it's the brand that is the issue (ie not generic Topiramate) not the form. 25mg sounds quite a low dose. Are they going to step up or will that level work. I'd be really interested to hear from an adult how it effects your mood (you can tell me to bog off if that's cheeky) as dd suffers terribly with anxiety and is certainly challenging when changing dose (it upsets her tummy too).

LeonieDelt Mon 13-May-13 20:13:16

Message withdrawn at poster's request.

zzzzz Mon 13-May-13 20:29:17

The slower you increase the less the impact in our case. For us it's been a miracle.

infamouspoo Mon 13-May-13 20:31:10

I take topirimate 100 mg daily. The only side effects are cognitive slowly and I cant find words. The eye pain is bad though. I was told to watch for that as it could be narrow angle glaucoma.
One good side effect is total loss of appetite. I've lost a stone with no effort grin

DisAstrophe Mon 13-May-13 20:33:17

zzzz - It's a bit like the Chinese curse isn't it: "may you live in interesting times". Sounds like after all the adventures with your kids you need time to let the adrenaline wear off a bit.

The hosp Dr called just now. He was lovely and we have a plan I'm happy with. He is also going to speak the bigger hospital expert and try to hurry up the referral.

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