What is it about Church?

AngelaVA

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My daughter has a seizure every time she goes to a birthday party or play date. It's really frustrating for her because of course she ends up missing out on things. I think it's the excitement and maybe a little social stress/anxiety. And now because she realizes she always has seizures at these things there's even more anxiety. Anyway just saying I can relate to the frustration.

We did not have luck with gluten free or other gut healing diets. Which doesn't mean they aren't worth trying, just that I would also continue to follow up with the neurologist and maybe do a sleep deprived EEG if that's not what you already had.




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KarenB

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She has never mentioned a smell, however, just last Sunday when she had a smaller episode, she did say she couldn't stop staring at a flickering light. I noticed it as well, when ever the air conditioner would kick in the lights would dim and brighten. That could also explain why it has only happened in the summer-when the air conditioner is running! What do you think?
That sounds very like a photosensitive seizure. My son had those for awhile, and that's exactly what he would do -- fixate on the little light on the air conditioner, like a moth to the flame.

It sounds like she's had adequate neurological testing -- EEG, MRI, etc. However, you should know that an EEG or MRI that doesn't show anything does NOT rule out epilepsy. Our son has had probably 15 EEGs (and a couple MRIs) -- they all came out clear EXCEPT when he was having a lot of seizures -- like daily. But when he was only having them sporadically, his EEG would always come out clear.

I do agree pushing hard for a Celiac test. (And, has she had any GI issues like diarrhea?). This is related to seizures

I think it's also time to make another appointment with the neurologist and report the new development. She's had a couple of what sounds like tonic-clonic (grand mal) seizures, but she may be having some milder seizure types which aren't getting noticed. As mentioned here, going into puberty is often a trigger for seizures. You mentioned your brother's epilepsy, and brain scarring -- but does he also have celiac or symptoms of celiac?
 
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Emerald

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I am a teen, and whenever I am in church, I have a seizure! It's strange. I was an altar server, but because of my epilepsy, I had to step back a little. If your daughter is tired in the morning before she serves, I reccomend having someone step in for her if possible. For a lot of people with seizures, fatigue is a huge trigger!
 

MAB

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You don't say what church you attend but when I was younger I attended Catholic church. I know there was lots of incense burning (not sure if it was for every service or just special services).

Odors cause the majority of my seizures, even pleasant odors. Maybe that could be a reason.
 

happyw5

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It is Catholic and there usually is incense... I will have to see if there is a connection. She hasn't had any problems for a month now. So we are basically just watching her. Thanks for all the info everyone
 

batman

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I don’t know if you will receive any notifications about my reply, because I noticed the most recent reply you created on this topic thread was on October 4, 2015. I backed away from post replies concerning seizures and epilepsy because I felt I was reaching the point where I might have to attend something like a ‘Forum Repliers Anonymous’. Anyway, with me search the forum for anything concerning what I strongly believe is directly related to my seizure activity, this tropic thread showed up in the variety of search results. And with the title being ‘What is it about Church’, and the crap I went through with a church back in 2001, I just needed to read through this topic thread.

If it seems your daughter’s seizures are only taken place inside the church, and possibly even in a specific area inside the church, then if you haven’t discovered exactly what is triggering your daughter’s seizure activity, you might have to do some in-depth detailed searching. It’s like looking for a small needle in a haystack. And you might even need to ask other members of the congregation to help.

Incense? That could be a possibility. However, that is only one pertaining to smells. Is there more than one flavor of incense being used inside the church? If there is, then if your daughter has a seizure while she’s in the church, then you’ll need to find out which flavor of incense was being used at that time. Another possibility… Are your daughter’s seizures being triggered by something that someone else is wearing during church service? Such as perfume, cologne, deodorants, hairspray, or some kind of aroma in either the laundry soap and or dryer sheets that people use to clean the clothes they wear to church? Or any liquids or powders containing fragrances in order to maintain the cleanliness and upkeep of the church, as in what’s being used on the carpet and or the material fabric in the pews; or furniture polish? That small needle in the haystack could be something that was either already in the church before people started coming into it; or, something that someone is wearing when they come into the church.

When the church is being prepared for service, find out exactly what was used, when it was used, and where it was used. Is something being more focused at the front of the church, versus the back of the church? Once everything that produces an aroma inside the church, prior to anyone coming into the church, has been ruled out as being highly unlikely to trigger your daughter’s seizure activity, then the next procedure will most likely be more difficult and more time-consuming. That next procedure is trying to narrow down what someone is wearing or producing when they are physically inside the church itself. Focus your attention on the pathway your daughter took to get from point A to point B inside the church. Point A being where she was before the seizure took place, and point B being where she was when the seizure took place. You, or someone else, will need to ask the church members who were closest to the pathway your daughter took, to please write down all the details they can provide as for everything they were wearing that produces an aroma. Maybe you can ask or make a polite request for those church members to sit in a different location so they can be further away from that same pathway your daughter will be taking the next time she is inside the church. Basically anything you can think of and have done to find that small needle.

I know all of this will be time-consuming, but it will go quicker and cost far less, money wise, to help eliminate your daughter needing to go through repeat medical tests (i.e. MRI, EEG, etc.).

Another thing you might want to look into, which is something I started looking into because the gastroenterology tests I recently went through appear to be disorders pertaining to ‘neurogastroenterology’. For myself, I’ve been focused on ‘intestinal pseudo-obstructions’, because I have the symptoms of it, and lo and behold, one of the symptoms just so happens to be… Seizures.
 
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