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Original poster

Complex partial seizures

9 replies

MummyEt · 27/11/2022 23:11

Hi,
just wondering if anyone has experience of their child having complex partial seizures? My 2 year-old son has staring spells where he is unresponsive, lasting up to 10-15 minutes. We are awaiting EEG results and an MRI but would be interested to know of anyone’s experience (especially if a cause was found and if it’s been treatable or outgrown).

Thank you so much

OP posts:
Original poster
MummyEt · 27/11/2022 23:14

Just to add these have so far always been when he is mildly under the weather

OP posts:
Housechaos · 04/12/2022 21:30

Heĺlo! I have these seizures, namely left temporal lobe epilepsy. Mine only last a couple of minutes but I get a feeling of deju vu, an odd taste, echoy feeling and lip smack. It's a strange experience. A cause has never been found for mine but it's easily controlled with anti-seizure drugs.

Hope your little boy seizures settle down and you get the help you need.

Housechaos · 04/12/2022 21:31

The only time I have seizures now is when I'm unwell ie covid, sickness bug etc

Original poster
MummyEt · 05/12/2022 01:03

@Housechaos thank you so much for your reply, that’s so interesting to hear as I’ve not managed to find any similar-sounding cases before. Apart from the length it does sound really similar to what my son is having. I’m so glad for you that your seizures are easily controlled and no bad causes were found, and it gives me hope for my son too! Thank you so much again

OP posts:
JehovahJireh · 29/04/2024 22:04

MummyEt · 05/12/2022 01:03

@Housechaos thank you so much for your reply, that’s so interesting to hear as I’ve not managed to find any similar-sounding cases before. Apart from the length it does sound really similar to what my son is having. I’m so glad for you that your seizures are easily controlled and no bad causes were found, and it gives me hope for my son too! Thank you so much again

Hello! Apologies as I know this is an old thread, but I’d love to know how your son is doing? This sounds very similar to my 3 year old. It’s been going on for 6ish months now and much like you, he just needs to be mildly unwell for them to come on, rather than having a temp. I’m finding it so distressing. EEGs and MRI all normal so no answers there. Hope your little boy is in a better place now. I’m just longing for this to stop / him to outgrow them! It’s hard to find others with similar experiences…

Original poster
MummyEt · 29/04/2024 23:48

@JehovahJireh hi! Ah I'm sorry to hear your little one is having a similar thing - it's so stressful isn't it! I've not yet met anyone who has experience quite the same thing so it's good to meet you.

We still don't know what it is - same as you we've had a clear brain MRI and haven't captured one on EEG. They currently seem to have decreased a lot in frequency and are fairly rare now, and he generally has more awareness during them. We initially thought we'd inadvertently found something that stopped them as he went a number of months without any when he started taking a daily multivitamin, despite a few bouts of illness during that time. But he has since had a few whilst still taking the vitamin, although a lot less than before so I'm not sure if there is a vitamin deficiency involved or if it's just coincidence.

The dr is hopeful that it might turn out to be more of a state that he goes into in response to illness rather than epilepsy, as he said he would have expected them to increase rather than decrease if it were epilepsy. He's taking a 'wait and see' approach for a while given my sons still at an age where he's supervised if doing anything like swimming / climbing etc so isn't really a danger to himself when they happen.

Separately, my son has also just been diagnosed with a Lazy Eye by the optician, with one eye having weaker sight. I expect it's unrelated but as it's still without explanation I'm a little intrigued as to whether treating that will have any impact! I do wish we knew what was behind it all as it does weigh on my mind a bit

OP posts:
Original poster
MummyEt · 30/04/2024 00:19

@JehovahJireh also just to add that my son is now 4 and otherwise seems healthy. Currently the episodes are much more infrequent and the overall hope is that they will just be outgrown, so we are in a more positive place than when I originally posted the question

OP posts:
JehovahJireh · 30/04/2024 22:07

MummyEt · 30/04/2024 00:19

@JehovahJireh also just to add that my son is now 4 and otherwise seems healthy. Currently the episodes are much more infrequent and the overall hope is that they will just be outgrown, so we are in a more positive place than when I originally posted the question

@MummyEt thank you so much for replying to me! I’m so pleased to hear that your son is having a lot less of these than he was. I am longing for the same in our case. Can I ask how many he’s had in total / over what period of time? And how did they start? Ours started out with what seemed like more typical febrile seizures as they were with a temperature and more general. But, since then, whenever they occur he is only mildly ill, just as you said, and they’re always focal. We were started on medication in Jan which seemed to be working, but this past month it seems to have lost its effectiveness and they’re back ☹️. It’s the length which is so horrendous .. almost always around 10-12 minutes and needing to use midazolam. Has your little boy aware / responsive during the episodes? And have they ever mentioned GEFS+ to you? Thanks so much again for coming back to me. I feel so alone in this and struggling with the constant anxiety from it all!

JehovahJireh · 30/04/2024 22:09

JehovahJireh · 30/04/2024 22:07

@MummyEt thank you so much for replying to me! I’m so pleased to hear that your son is having a lot less of these than he was. I am longing for the same in our case. Can I ask how many he’s had in total / over what period of time? And how did they start? Ours started out with what seemed like more typical febrile seizures as they were with a temperature and more general. But, since then, whenever they occur he is only mildly ill, just as you said, and they’re always focal. We were started on medication in Jan which seemed to be working, but this past month it seems to have lost its effectiveness and they’re back ☹️. It’s the length which is so horrendous .. almost always around 10-12 minutes and needing to use midazolam. Has your little boy aware / responsive during the episodes? And have they ever mentioned GEFS+ to you? Thanks so much again for coming back to me. I feel so alone in this and struggling with the constant anxiety from it all!

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@MummyEt I should add our little boy also is otherwise healthy and developing well! Can I ask which multivitamin you’ve used?

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