Photosensitivity causing absence? Genetic?

[RockerMama]

Oh boy, where to start? I posted a bit here last winter while my daughter(7) was going through testing for epilepsy based on mainly aura/sensory based symptoms. We went through a lot of crud from some really awful Drs before meeting one that listened. After putting her on Depakote sprinkles, her symptoms almost entirely cleared up. We switched her to tegretol, and her symptoms did completely clear up.

Unfortunately, the wonderful neuro no longer accepts are insurance, and the out of pocket pay is just too much. We have a recommendation from him for a new Dr, so fingers crossed he is also good.

Also, unfortunately, it seems my son, Bubby(3), is now needing a neuro again, too. When he was 11 months he had a cluster of atypical febrile seizures. After a 5 day video eeg, they ruled it was just unusual, but fine. He has continued to seize with low temperatures, which while difficult to see, hasn't been too bad. He has an insanely high pain tolerance, never acting sick, so the seizures are normally the way we find out he is sick.

Two weeks ago, while in a dark room with candles(my seven year old wanted breakfast by candlelight, silly girl) Bubby completely zoned out starring at the candle. Like he was in a trance, he wouldn't respond to anyone, short of a low guttural noise. After the candles were blown out, the light was on, and he was removed from his little table and put on the couch, he started talking and was soon back to normal. We brought him to the Dr, who dismissed the episode as him still being tired, or just ignoring us. According to her, photosensitivity causes tonic clonic seizures, not him to zone out. And that absence seizures are short, not lasting minutes.

I had read that the photosensitive seizures COULD be absence. If that is the case, then wouldn't the absence seizure continue because he was still starring at the flickering candle?

Anywho, he hadn't had another episode, so I figured maybe it was just a fluke. That is until Friday when we went to the movies. During the credits, as we were getting ready to leave, he stopped responding to us, though he kept looking to the side(not jerky/fast). In all of his seizure plus these two "episodes", his face has gone blank. My husband picked him up and tried to get him to stand, but he wasn't fully supporting himself. It only lasted about a minute and a half, start to responding normally(which happened once we were to the door of the theater). My hubby brought him to the Dr on Saturday, where the on call Dr said it sounds like a seizure, and to call the neuro we do not like. Which I am hoping to avoid and find someone else.

Can photosensitivity cause absence seizures? Is it considered epilepsy? If so, is it common for two children to have two different forms of epilepsy? There is so much I never knew about that I am learning.

 

[KarenB]

YES!! They can!! They usually cause tonic-clonic seizures, but not limited to that, and what you just described sounds EXACTLY like what Jon does (except the absence seizure then leads into a tonic).

He will fixate on a bright light (usually looking over his shoulder at it) and just stare at it (it can even be the little tiny green light on the AC unit when the room is completely dark). He will also stand right in front of the TV screen and stare at it (we have to hold the remote in our hand and switch the TV off really fast when he starts walking toward it). He will fixate on the light or TV, sometimes for just a few seconds, but sometimes for several minutes before going into a tonic seizure. I didn't think about that being an absence seizure, but it certainly could be. But they usually end up in a full blown tonic.

There's one type of photosensitive seizure that children get that cause a vomiting kind of seizure, and may not cause a tonic clonic at all -- so photosensitive seizures are ABSOLUTELY not restricted to tonic clonics.

He really needs to get to a good neurologist, and have an EEG done (with the strobe lights probably) and probably get on meds or Keto diet or something before this progresses to worse seizures.

Interesting that two kids in the same family have seizures (of a different type). I think photosensitive seizures can sometimes be genetic. Also, when a child has epilepsy, the nature of the seizures can change over time.

For instance, our Jon started out with tonic-clonic (grand mal seizures) at age 1. Then, when he was 6, he started having tonic seizures (without the convulsions), but also the occasioinal tonic-clonic. Then, about 6 months ago, he started having gelastic (laughing) seizures. And about 3 months ago, he started having the photosensitive seizures. I'm wondering if the same child can have more than one type of epilepsy, or is it the same epilepsy with different manifestations?

 

[RockerMama]

We got an appt with a neuro that he saw when he was about a year old. My issue with her is that she was so dismissive, including telling us that we would be wasting our time getting him an Early Intervention eval cause he wouldn't qualify. He did, and was significantly delayed. It makes it hard to put your trust in someone after that, you know?

Now, this is, of course, nothing compared to the Dr in the same practice who told us that our 7 year old needed a therapist since her issues were obviously behavioral/psychological. Not to brag, but I have one of the happiest and most well adjusted kids there is, so this was obviously a load of you know what. And, since she barely said to words to my daughter, she was in no way qualified to even say this.

Such good experiences with highly rated pediatric neuros, huh?

I will update tonight or tomorrow with what we find out. They, obviously, have a history of being dismissive, but his episode seems so spot on, it is hard to imagine they wouldn't listen.