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

[DisAstrophe]

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]

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]

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.

[infamouspoo]

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

[DisAstrophe]

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]

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]

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

[BeeMom]

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]

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]

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

[2old2beamum]

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]

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]

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.

[2old2beamum]

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]

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 .

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.

[infamouspoo]

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

[DisAstrophe]

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.