Update on Jack...bad eeg results, urgent advice needed!!

[proudestmummyever]

Hi guys, taken me a lot to write this, as I am soo upset, I haven't posted for a while, anyway Jack had a video EEG done on Tuesday,his consultant called today and told me that the EEG is still the same as it was when last done, when Jack was 10 months old, he is now 28 months old, Jack is being reduced off keppra and epilim right now until they are stopped completely,however he is still on 6ml nitrazepam twice daily, and now been started on 15mg topomax(this is why the keppra and epilim are being withdrawn) just at night atm....Anyway the consultant when I asked if it's the worst EEG he has seen he said one of the worst, and it is very bad, said still a LOT of epileptic activity going on

So, he said that when he comes bk off few weeks hols when we see him on 29th July he is gonna get repeat EEG done to see if topomax is working or not, if not and EEG is same he is gonna start a course of steriods

Doesn't ths mean they dunno wat else to do??

I am soo worried, I also asked him in terms of Jack having a great life wat will happen there?

He answered me saying " Well...he is struggling"

Just got it in my head he is saying thre is nthn more can be done, and tht my son may die

I have been distraught all day since, I think I will try get hold of consultant in morning to ask EXACTLY what this means????

BUMP

Oh you poor thing.

OK, well the steriods seem to be usually there to give them a "break". It generally will knock the seizures on the head, but you can only use it for a few weeks. So it's often used if you are trying a med which takes a while to get into the system. I don't know how many other meds you've tried (topiramate did it for us, btw, it is a fairly good one but what works for each person is different) but there will probably be a bit of trial and error and more EEGs while they see what else will work.

There are other options too. There is a thing called the "ketogenic diet". It's hard work for you because they have to eat precisely the right combination of things so there's a lot of cooking involved. But it can work very well. Has he ever had MRI? Is there a physical cause, ie a bit of the brain which is wrong and causing the seizures? I know it sounds scary but in some cases they can haul that bit out and it stops it. I've spent time on kids' neurosurgery wards and I was astonished, astonished by how easily they were bouncing back from major brain surgery. So though I know just mentioning will make you freak, it could well come up with the consultant so I'm just planting the seed. Another possibility is a thing called "VNS" which is an implant in the neck, can also be very good at controlling hard-to-control seizures.

So, there are options. I'm not going to say "don't panic" because Epilepsy is horrible, and it's rational to hate and fear it. But it's not necessarily curtains. But what I would be doing is probing the consultant to see what the other options are, and get a feel of how much he knows about these programmes and at what point he'd be handing you over to someone more specialist, & who that would be. And given the nature of the EEGs, is it worth getting their input at this point, about what else should be tried before taking it further?

Whereabouts in the country are you? I know who we would go to in London, but that might not be helpful to you.

Over the course of a few months, we had the crappiest EEG ever (widespread, constant activity - complete mess) followed by the best EEG ever - was still a bit crap coz of the brain damage, but neuro happy to say he was seizure free (for a bit anyway ).

We've got another coming up, don't think he'll be seizure free anymore , but that's the shitty thing about epilepsy. Just when you think you've got used to it, up pops another new type, or a big seizure. It's hard to enjoy the good times coz you know that down is the only way to go from there, and, what the f*ck is going to happen next??
Why can't it stay the bloody same?
I hate it !

But the reverse is also true. Just as things can get suddenly bad, they can get suddenly 'good' too.

Don't give up hope, as Riven says, there's still loads they can do for Jack. I'm sure they didn't mean that he is 'struggling' to live - more perhaps that the bastard epilepsy is making Jack's normal life a struggle, at the moment.

Keep in touch tho, you've been very worried for a long time now. I'm not much help (you're usually helping me ) but know how you feel to be chasing the ever changing tw*t that epilepsy is.
Thinking of you x

Thanku for all your lovely comments!! Well, Today after a sleepless night worrying about what Jack's consultant meant about the results of the EEG, I called him

He told me that Jack's epilepsy won't get worse, but his brain malformation is behaving like a "cerebral palsy" and this is why Jack's co-ordination, and everything else basically is affected

He also told me Jack's life will be reduced , and he has 50% chance of living to age 40, and 50% chance of not living until then , said this is a generalised view on Special Needs Kids, said could be anytime from now until age 40

We are devastated of course, we went to see Jack's consultant at 2.30pm today to discuss it, and although this is a general view, there are no guarantees, and he says that Jack is at the very good end of the spectrum, as he is mobile, not walking, but can move around etc, the thing that would reduce Jack's life are if Jack was to get ill, for example, chest infections etc...all due to the brain malformation caused by the genetic disorder, said he thinks we will get Jack upright but, he won't walk "normally", and will need aids, but if by age 5 he isn't on his feet then that is a good indication that he won't ever walk, also said Jack wouldn't deteriorate or anything, the only way Jack's life will be reduced is by illness, and it is likely his life will be reduced xx

,I am devastated

So sorry. have no knowledge of epilepsy but wanted to say I'm listening and i'm sorry you are hearing bad news.

Thanks mummysaurusxx

Thanku xx

I also dont have any knowledge, but wanted to send you some positive thoughts. You are not on your own because we are all here for you.

Sending you lots of love proudestmummy. I have followed your posts about Jack and am glad that there are people on here who can offer their insight and experience. You are in my thoughts xx

Thanku everyone...is Riven about?? xx

Ok riven, let me knw wat u think bout my post if yr on today sometime