what type of epilepsy could my 4yr little girl have

Keeley - posted on 05/29/2012

Hi Kate,
just thought I would message you as its been a little while to see how your little Lexi is doing and yourself? hope all is well.
keeley x

Keeley - posted on 05/03/2012

I think it is the same as it just means that there is a cause for the seizures, my cousin has 4 lesions on her brain and suffered with a lot of seizures due to them but since being on medication rarely ever has them now and she is now 15. If she stops her medication she will no doubt have seizures again so I think it means they are on it for life but at least if it stops them you know you can carry on as normal no waiting for another 1 to happen at any time. Also puberty can set them off again as the hormones play a part in the epilepsy but i'm sure they will be closely monitored at this stage. x

Kate - posted on 05/02/2012

hello glad your lexi is doing well each morning is another step closer, do you no what the treatment for lesions as the thought had past my mind i live in essex its a shame its not closer xx

Keeley - posted on 05/02/2012

Hi there again,
we also had an abnormal eeg which was all over the brain but this is why they call it generalized. The good thing about that is it means that there is not something wrong with a particular part of the brain causing the seizures. I am not sure of why they want the MRI as we were told this would be the next step if lexi was put on medication and didn't respond to it. Because it did not show on the video maybe they want to be 100% sure that there is nothing there like lesions on the brain that caused the seizure and with the right side being more affected maybe they want detailed pictures to see for themselves. They have to cover themselves and I would try not to worry about the MRI although I know it is another horrible thing to have to go through at least you will know for sure what your facing. Sometimes with my Lexi not being on any medication or having further tests frightens me more as we are left open to anything from it. with your lexi going on the meds at least you will have that back up that it may control them altogether and maybe even stop them, that's what I felt was a plus about having the medication. I know how horrible this is and how alone you feel with it so if at any time you want to talk please feel free to ring me, I found speaking to someone who had gone through it themselves gave me slightly more strength and to have so many questions going round in your head and lying awake at night so terrified is something i wouldn't wish on anyone. We have our follow up appointment on 21st June so I'm trying to reach that goal with no more seizures but its the not knowing. If you want to email me via my private email its keeleyjackson@ymail.com and we can chat there over things and i can send you my number. Also do you live in Staffordshire as we maybe close? Keep me updated and I will you and stay strong hun, its so hard we feel like we are dying inside but we will get there. x

Kate - posted on 05/02/2012

hello again we saw the doctor about lexi and was told she has ubnormal results in the left and right side of the brain more so in the right, but they can not see the reaction of the seizures on the video, not sure if this is normal, so they want lexi to go on to Epilim 2x aday of 5ml to slow the brain down as the ubnormal results were showing almost all the way through the EEG and have booked for a MRI scan did they do the MRI scan for your lexi. we were told we must give lexi the epilim to slow her brain down so so worried hope this all sorts itself outxx

Kate - posted on 04/29/2012

thanks again,its so nice to hear from somebody about this because i dont no anybody that has a child that this has happened to and i wounder if it could be why some time my lexi wets herself at nite,some times she will wake to use the toilet as she hates it when she wets and other time she wakes up soaked and gets upset, so we have to keep the pull ups on at nite, will def keep u up to date as seeing the pedeatrics on tuesday and hopes your lexi stays in the clear and once again thankyou for getting back to me, take care xx

Keeley - posted on 04/29/2012

There seems to be some similarities as my daughter had red rimmed eyes and it seems as though it happened when she has gotten really stressed out, we now try to avoid those situations just incase. I don't know if you have noticed weather or not your Lexi goes very dark under her eyes and they seem to sink? We also noticed how pale she was as we had also been to the doctors and our Lexi has also on a number of occasions been sick in her sleep and not known until we have woken her? She also twitches and her eyes flutter exactly the same as you say and we have been told this is just the rem sleep stage and we can all jump or twitch in our sleep which I think is true to some degree,...maybe we are just noticing this now we are aware and awake watching them? I also mentioned her holding her breath. My Lexi had a very bad reaction the the Diazapam given to bring her out of the seizure which almost stopped her breathing but the good thing is is if god forbid that happened the paramedics can control their breathing for them. I read up a lot on this and it seems it is more likely to occur when the brain is relaxing, either before bed or rousing to wake in the mornings so may well have had something to do with her being quiet in the relaxation period? I also think that the seizures can vary as my lexi seemed to have 2 vacant and the major one in January started off sounding like 1 particular one leading into another type, but your Lexi's sounds exactly the same to mine so there is hope. Also the brain matures and the threshold to seizures increases daily so each day you can tick off the calendar is a day stronger they become. I will not be surprised if they say it's generalized idiopathic epilepsy but I would be tempted as we have to hold off meds as it seems it's too easy for them to cover themselves and diagnose this, especially as they are labelled it for so long and try the vitamin E400. With it being capsuals we have to burst them and squirt the oil out over her breakfast in the mornings without her seeing, they are un- noticed in porridge, crumpets, weetabix, toast ect with butter /sugar. It is well worth a try as I said seems to be working for us and the study said it stopped seizures altogether in children between 60-90% along the meds but again we are giving it to her without the med anyway and she looks so much healthier. I now bedtimes are dreadful now and we worry as soon as night falls but it will get easier, thats the problem, it takes time and we want with all our hearts to go back to when everything was ok. Please keep me updated as I will you and I will say a prayer for your lexi too tonight and stay strong hun, your not alone. x

Kate - posted on 04/29/2012

hi thanks for getting back to me, that was the only full blown seizure lexi has had but when she gets her self up tight she goes as pale as a ghost and her eyes and lips go bright red, and the other nite when watching her sleep she kind of held her breath and her left eye lid half opened and was flickering with her left hand twitching but her right side was fine it happend on and of 5x in the space of 1hr, some times she will wake up crying saying behind her left ear hurts and her head again on the left side, and on an off for the past year she can be sick in her sleep with out knowing till i wake her, i kept taking her to the doctors but they always say shes fine and i felt paronoid as you do, but when she went unconsious at school it was the paramedics that brought her round after about 10mins, it happened at school during relaxation time, i hope both of our lexis grow out of this and thankyou for getting back to me xx

Keeley - posted on 04/29/2012

Hi again, could you tell me what she was like when she had the seizure? Is this her 1st and only one? Your story from what I can tell so far sounds similar to my daughters and we have been told there is a very good chance she will outgrow it as a very high number of children with idiopathic generalized epilepsy do. x