Jack's seizures ar a nightmare just now, waiting on consultant calling back, falling to pieces....

[proudestmummyever]

Hey all, ust as the thread title says am afraid, waiting on consultant calling bk, he will probably end up in hospital AGAIN, just soo depresses, had enough, just broken

[TotalChaos]

not got any relevant knowledge but couldn't leave you unanswered, so sorry you and jack are going through such an awful time, hope the consultant can suggest something helpful tratment wise.

[fatzak]

Sorry you are going through such a hard time I hope that they can suggest a new med to help - we went through the most awful few weeks with DS and although his seizures are not fully controlled, they are 100% improved since they changed his medication.

[trace2]

proudestmummyever so sorry about jack! please let us know how it goes with the phone call if you can ?

[proudestmummyever]

Thanks...well the consultant called, and suggested we go in next tues for full day to be observed, they r gonna bath Jack, change nappy, everything tht usually gts a seizure going, I told the consultant I am afrai of lennox-gastaut-syndrome, he said there is nothing to support it atm but always a ris it could evolve in future, I am praying like mad Jack doesn't have this

He also said tht if it is a provoked seizure eg, usually Jack lying dwn being dried after a bath, gettn nappy changed, waking up, brings on seizure then may not be seizure as such but looks like 1, and no pont keping pumping drugs into him if it is ths and apparently he can outgrow ths, so I am praying that it is ths!

H is currently on epilim 5ml morn and night, nitrazepam 5ml morn and night, and lamotrogine 30mg morn and night and midazolam if bad eizure, also gets 3ml melatonin going to bed to make him sleep

Fatzak wht is yr son on? What type epilepsy does he have etc ? xx

[trace2]

proudestmummyever have you got them on tape? so the pread can see them, can i ask what he does? dont worry if you dont want to i understand, dd as some sort of seizures but our nuero not sure they are ,we have loads of tapes and every one eles thinks they are but him

[madmouse]

Poor Jack poor mum. Hope you get answers.

[fatzak]

Proudestmummy - DS is on Keppra and Carbomazepine and is just on last few days of Clobozam they put him on in hospital. They originally thought he was having generalised seizures but now say they are focal. We have just got an appointment through for a PET scan in London - bit of a treck from Yorkshire for us!

Would agree with Trace to get as much footage as possible - it was film on DH's phone that made them decide DS seizures were focal despite EEG findings!

[fatzak]

Trace - by the way are you still not happy with DD's neurologist? I can really recommend ours at Leeds - the whole team including the epilepsy nurses are great. When we were down your hospital for the 3 day obs I was very unimpressed. The ward staff came nowhere near us for three days apart from to bring him food Not a person apart from the EEG techician had anything to do with us, it was dreadful

[bullet123]

I'm sorry you are all going through this . I hope the consultant can help.

[proudestmummyever]

Hi, Jack mostly aware, when he does it...but nt always, what he does is his eyes go upward, at same time he stiffens and brings clenched fists up to chin level for few secs, sometimes holding breath sometimes not, then stops then does it again, then stops, does it again and so on.....for 10 mins at most just nw....hate it

[proudestmummyever]

Have showed paed videos on phone, but not these types...caught one the other day, and btw his seizures which I have just described are when he is lying down, but if he does ths type of seizure whilst sitting up his head falls forward, his eyes go upward nd stiffens nd pulls clenched fists up to chin level

[proudestmummyever]

The video is on my laptop.....any ideas hw I could let u's see it?

[proudestmummyever]

any 1? I am adding the video to youtube...now what?

[proudestmummyever]

This is the link, but video may not be ready yet, if you just keep trying it, ths is one of Jack having one of these seizures few days ago www.youtube.com/watch?v=YmDtfIwhO1U

[proudestmummyever]

www.youtube.com/watch?v=YmDtfIwhO1U

[proudestmummyever]

Working nw...pls look xxx

[5inthebed]

PME, what a lovely boy Jack is.

Sorry can't comment on seizures, as have no experience, but just wanted to give you a . You really sound so frustrated with the lack of help

[proudestmummyever]

Thanku 5inthebed...dunno what type they are, or if they r seizures, consultant having doubts after him bein diagnosed jan 08 with severe epilepsy due to a genetic disorder...hope sum1 along sn who knws something.xx

[proudestmummyever]

Thnks riven so they look myoclonic?

Feckn hell, tht is what he originally said after the IS diagnosis, myoclonoc epilepsy, although sometimes having absences, and as you know status seizures...watched Celyn's video, suspiciously like Jack as a tiny baby 2... the tongue comin out, everything, and the other link you put on...OMG that is defo Jack right nw....shit

[proudestmummyever]

And I will be demanding an eeg

[proudestmummyever]

I wonder if it is possible he could still have IS at 2 years old?