Back home again - what a fortnight!!

[fatzak]

Back home after another 5 days in hospital with DS and his uncontrolled seizures.

Don't know whether i am coming or going at the moment! He is having more nighttime seizures than ever before plus he is very very odd during the day showing very violent and irrational behaviour.

So in the past 2 weeks we have pulled him off the lamotrigine completely (that seemed to be increasing his day time tonic clonics), upped the clobazam to 15mg twice daily, reduced the clobazam down to 7.5 twice daily as on the high dose seemed to be making him totally bonkers during the day, introduced topiramate (which, oh by the way has behavioural side effects) and now have a lovely bottle of melatonin tablets to calm him during the night!!!

They have told us not to see any improvement until we up the new meds next week - I am frazzled! We have juggled DS1 and DS2, work, hospital stays and doctors who just don't seem to realise how bad things are. Both the top dog neuros at the hospital were on leave this last week (great, at the same time) but was very impressed with both the neuro we saw and her registrar. Both women, both very concerned and understanding
Phew. So a huge glass of wine and a pizza is now calling

And life on children's neuro science ward is heartbreaking to see what some families are going through. It has really affected both me and DH and made us realise that things for us really aren't that bad

Couldn't leave your thread unanswered.

Sorry to hear that you've had such a tough time, but I hope the new meds improve things and you enjoy your wine and pizza. xx

Glad to hear you are home. I hope the drugs work and that things improve.

DS had a big seizure sunday night so we were in for a few days too. It is bloody exhausting.

Enjoy your wine, I shall be joining you with a brandy.

cheers to you both. Am tipping my imaginary glass. Sorry you've both had a tough time past week /s. I saw a friend today who is also struggling to control her dc's seizures. They are waiting for vns surgery. It is all so shattering, completely unpretictable and makes you feel utterly useless as parents

But obv yr not. Just hope things settle for you both soon

Asked about ketogenic diet Riven and consultant says it's a possibility but there is a 6month waiting list.

Yes Riven, similar thoughts here - have dug out my Sue Dengate Failsafe book and will really have a go at that. Have tried it in the past, plus wheat free. It just sometimes seems so pointless when we are up against him reacting so badly to all these meds

Am all fired up now to do it Riven! We are just at the worst point ever apart from last April when he went into non-conv status. His behaviour is just unbelievable - he is seriously disturbed at the moment There is no way I can send him back to school for a long time as he is just so violent and irrational I think a lot is a reaction to clobazam - in the past it used to help for a very short dose but we did notice he became emotional after a while. So the huge amount he has been on for the last few weeks will be horrendous for him.

Are seeing consulant in 2 weeks so will def put it to him - will even go anywhere in country if it means getting seen earlier! Did you have to go on a course for it?

We couldn't be futher away from Bristol Riven - we are in Yorkshire

Will try and tackle wheat/additives etc to begin with in the hope something might help.

Would love to see the film thanks- you are on my FaceBook so will send you a message!

Riven,
Did you have any medical/dieticiam supervision when you increased the fat in DDs diet and cut out the sugar?

I am starting to look at DSs diet which is riduculously low fat, wondering if I can take small steps in upping his fat intake a bit. I know one or two now locally, and one of them failed on the diet because the sudden high fat intake made him very sick.

Sent it earlier today Riven!

Just spoken to hospital and we are going in again. He is having too many absences and I am worried that he is going into a non conv status again. Maybe this time the Drs will actually look at him rather than just asking us what is going on.

He's still in. I've popped home for the night. He is getting worse I think - he cant string a sentence together, is in and out of absences yet still they say he isnt in status as the EEg last Friday said so. That was last Friday, today is Tuesday (is it???). DH over there now and does lots more shouting loudly so I suspect we may well get another EEG tonight!

I am gradually losing the plot Can't belive we are heading towards the end of Jan - where has it gone?

I am sorry to hear this. I hope DH gets dead shouty at them .

In the meantime, try and get some rest (I know, I know - that's why I didn't say sleep). It's just too hard when you are completely frazzled.

Hope tomorrow is better x

HI fatzak...
so sorry to hear you're having such a tough time and DS too. Bloody hell it crap when the drugs affect the behaviour... and then don't even kill off the siezures.

we're having behaviour troubles too on keppra, but no seizures thank goodness.

when I was in what my friend calls my 'searching ' phase, I went to a conference about the keto diet organised by 'matthew's friends'. www.matthewsfriends.org very interesting, and plenty of people there who had experience in how diet affects epilepsy.

the website's down at the moment, but there's a phone number.. they're very helpful and kind people. I think they have a conference every spring, and there's a facebook link too which you can find if you google .

you might not have to go the whole way... some people have success with cutting out gluten, and sugars.

How are things today?

Hi all - things not good am afraid He is having almost constant absences during the day but they are adamant that he is not in status despite not doing an EEg since last Fri and things have gone downhill since. We are very disappointed with the nursing staff on the ward - hardly any care and one night nurse even refused to give the sedative the dr had asked him to have The Drs don't know him and they change every couple of days so no one can see any change.

So he is either in a far away locked up land where he can't string a sentence together, or screaming and screeching which is great fun.

Hope things improve soon.
Wanky useless staff