Benign Epilepsy

Aquablue1324 · 2022-09-27T04:39:22+00:00

Good morning, My 8month old started to spasm In clusters 5 days ago out of no where. We took him the drs and got an EEG done the next day however he was sleeping, the test came back normal and the dr is now saying it could be benign epilepsy that he will grow out of over time. Has anyone experienced this? I'm so worried as he's still doing the spasms (reaching out and grabbing the air 6 times and shouting/making noise ) . Any advice would be great Thanks

carriebradshawwithlessshoes · 27/09/2022 12:54

Hi Acqua, my 7 year old has a diagnosis of epilepsy although has been on low level meds now for some time with no episodes so we will try and wean him off soon (consultant’s advice.)

Your DS is obviously a lot younger and I’m not sure how that relates to meds (others may have better advice) but I would advise what they have always told us which is to record on your phone or the tablet as many as these episodes as possible (really important, explaining things back to drs is difficult after the event), also does he do these motions when he is awake? During these episodes will he still look at you, follow a toy, reach for something etc or is he disconnected? Note that too. If he’s awake when he is having an episode does he react if you touch his face? Our consultant has always told us to do this. Does he then turn away, does he blink or start as you would expect? Keep a diary and as many recording of the above as you can.

i can only say then to keep pressing, another consultant if you feel you are getting nowhere with this one.

Original poster

Aquablue1324 · 26/10/2022 05:39

carriebradshawwithlessshoes · 27/09/2022 12:54

Hi Acqua, my 7 year old has a diagnosis of epilepsy although has been on low level meds now for some time with no episodes so we will try and wean him off soon (consultant’s advice.)

Your DS is obviously a lot younger and I’m not sure how that relates to meds (others may have better advice) but I would advise what they have always told us which is to record on your phone or the tablet as many as these episodes as possible (really important, explaining things back to drs is difficult after the event), also does he do these motions when he is awake? During these episodes will he still look at you, follow a toy, reach for something etc or is he disconnected? Note that too. If he’s awake when he is having an episode does he react if you touch his face? Our consultant has always told us to do this. Does he then turn away, does he blink or start as you would expect? Keep a diary and as many recording of the above as you can.

i can only say then to keep pressing, another consultant if you feel you are getting nowhere with this one.

Thank you so much for your response, it made me feel better in a time of panick. They've reduced a lot and he only does them during feeding times and it seems more like frustration so I'm just monitoring for now.

OP posts:

carriebradshawwithlessshoes · 26/10/2022 13:49

That’s great and anything else, ask!! Good luck!