Still struggling with what type of epilepsy my 9year old son has!

Hi all, well I posted in November that they found my son had very abnormal EEG and neuro diagnosed Absence seizures. He started on Epilim, but 2 months later, his hallicinations increased and he started with "black" things (he lost vision for about 30 secs and felt like he was in an earthquake). Also had a few seizures where his arm would twich followed by a state of slight disorientation - for about 20mins. Neuro adviced to increase his epilim (and said seems more that he has Ocipital Lobe Focal Epilepsy) , hallicinations (visual and auditory), rolling back of eyes (but he is consious enough to pull them back down) followed by extreme sleepyness,(feels blurry, dizzy and talks stiltedly and slowly) - also bed wetting for the first time around 5am (happened a few times in last 3 months). Neuro then said to try another Med (and thinks he has Multi Focal Epilepsy) and has booked him in for 2 to 3 days of 24 hour EEG and Video monitoring at Epilepsy Monitoring Unit. BUT suddently as I was waiting to clear his new dose of Meds to start taking him down in prep for the monitoring and Med change - he has stopped any noticable seizuring and in fact is in excellent state. Previously even if not obviously seizuring he would get red eyes, huge pupils and just be dazed and not with-it - unable to do simple maths homework etc, his teacher said he would just stare in distance and be removed from the class. Now I feel hesitant to mess with his Meds but also the whole monitoring thing is now cleared with Med aid, hospital time booked etc - any thoughts - should I go ahead or wait to hit a bad patch again!! (there is always a waiting list for the monitoring but the plan was to reduce his meds so that they can possibly get him seizuring - although neuro said they will get more info from longterm EEG anyway)!

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  • Hi Teelee, sorry to hear your son is going through all the above. I have had epilepsy for 40 years but was allergic to Epilim. My seizures started at 16 due to stress and hormones. Seizures can occur at any time, i.e. with a break in between, then carry on as usual. I went a period of 15 months free, then my tonic clonic seizures started all over again. So far, only 5 months free. I have been on Carbamazapine and Phenytoin for years which I find suitable and compatible. My seizures were absence seizures (petit mal), then as I got older turned into Tonic Clonic (grand mal). His stress level at school perhaps affected the seizures he was having, perhaps puberty (although maybe still too young at nine), but hormones can also affect how one reacts. I would make further contact with Neurologist or G.P. and explain the situation. They may still want to do testing but I am sure could do this in the future if he goes back into that state. If he appears to be stable, my recommendation would be to leave him as he is but speak to the doctors first. Once they play with medication levels, this can also affect his seizures. All the best and keep us updated.

  • Hi - well my son went for the monitoring - it didn't tell them much apart from that he has rolandic spikes and then also lots of other activity (including occipital lobe which at least explains the hullicinations) - then 2 nights later (once home) he had a series of seizures - started with his one side of his body convulsing and ended in a series of grandmals - very frightening - paramedics came as he was having back to back seizures for 45 mins and he was in hospital for 3 days - the way the seizure started was focal and then secondary grand-mal - he is on new meds now and neuro has told us we must treat any seizure as medical emergency as he just went from one seizure to the next. He is struggling to get back into school and his memory and processing time seems badly affected.

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