help pls: photosensitive epilepsy in 6 month old?

[sanam2010]

(crossposted in Children's health)

help please, looking for advice from mums of epileptic children. Yesterday we went to a restaurant with DD1 (6.5 months), she was lying in her buggy looking up at the lights and it suddenly seemed to me as if the lights were having a scary effect on her, she was staring at them and twitching, it didn't look right to me. It scared me and I insisted we take her on our lap. DH thought I am imagining things, and we put her back down a while later but again it didn't look right to me and I took her back on my lap. Today it also seemed like sometimes she was shaking and tensing her muscles in a weird way at home. She just started rolling over though so what I saw today also could just be her practising her muscles.

What calmed me down was that I thought there was no family history of epilepsy on either side so it couldn't be. As I told DH again today though that I thought her movements looked weird to me, he told me as if it was a funny anecdote that he once had a seizure in front of an old TV as a child, from the light while switching channel on a very old Soviet Union TV (he's from the ex Soviet Union). I don't think where he is from they are aware what that means... but that means he has epilepsy, right? Apparently he only had this one seizure in his life. But does this mean he could have passed on some photosensitive trait to our DD?

As I am not even sure it was a seizure or if I am imagining, should I go to the GP about this or are they going to think I am a paranoid first time mum? any thoughts? is this dangerous?

Hi I have epilepsy (not photosensitive though) and no one in my family history has ever had it. But, my DD1 had many febrile convulsions and the doc said to me that children dont neccessarily inherit the epilepsy but can inherit the low threshold to having seizures from their parents.

If I were you I would get her checked out - a mothers instinct is ALWAYS right

oh sorry forgot to say - 1 seizure does not mean epilepsy your hubby couldve had a febrile convulsion or an unexplained seizure or anything really. More than 1 seizure def needs looking at

Absolutely go to the GP. Any concern like this at all should at least be checked out. NOBODY is going to think you are a paranoid first time mum!!

The best thing to do, in my experience, is to take your DD to the doctor. It may be a good idea to film the next event on your phone, if it does happen again before you see the GP go straight to A&E. They will not think you are paranoid in any way.

I would certainly film any episodes and take her to the GP. As a mother believe me your instincts are fine tuned to see anything unusual in your child. If something looks abnormal it usually is. I first noticed DGS roll his eyes up one day at 6mo old, (no more than 1-2 seconds) and even though I told myself he had just looked up all my instincts were saying otherwise.
DGS had a traumatic birth, fitted badly at birth, and had eye rolling/going limp episodes for 6 months. He is now 2.5 and they have stopped, but we are still terrified they will come back.

Hi all, thank you so much for your responses, it was really reassuring to hear from others. I have been watching DD since then and I noticed she does this tensing up a lot and it seems to be her new thing, not a seizure, maybe just related to rolling over. I watched lots youtube videos of seizures as recommended and realised it was nothing like that. I also tested her now that she does it more to see if she stops when I talk to her or distract her, and it does seem a voluntary thing that she just does when she is excited now, she immediately stops when I give her a toy or call her name etc.

I googled "tensing muscles/clenching fists" etc and it seems quite a few babies just do that around 6 or 7 months, really weird! So now I am thinking it should be fine, but just in case I have taken videos and will mention it to the GP to make sure next time I see them.

will come back if anything develops, but so far I think it might all be fine.

Did you youtube infantile spasms? I think that sounds like what you are describing in your DD.

Hi Sanam - agree with everything that's been said, especially about recording if it happens again. Your GP will more than likely refer you to a consultant who may well not do anything further until there is evidence such as your video. We had months of thinking that DS was just jerking as he drank his milk or fell asleep but it soon spiralled into full blown seizures which were hard to control .(DS is now very well controlled on the ketogenic diet)

Fingers crossed that it is just a "tensing" that she is doing and STAY AWAY FROM GOOGLE

thanks for following up. mummyplum, I hadn't youtubed infantile spasms, just seizures. Even the spasms in most of the videos look much stronger than what I saw in my DD, hers in terms of video is probably closest to what you see in this youtube video of a 6 month old with IS
www.youtube.com/user/LHampsonCyberEd123
so not sure if she has that but at least now that I have seen those videos which are quite different from seizures, I think I should take a video and show it to the GP after all, I need to talk to the doctor this week about another infection she has anyway so I will mention it as well and see what they say.

Good luck with the GP - infantile spasms is what sprung to mind when you first posted but I wasn't 100% sure. I hope that you can get some sort of clarification and peace of mind when you see the doctor. Mummys instict is very rarely wrong.