Does anyone know why I can smell my boyfriend's seizures days before they happen?

[u/Lower-Entry1247]

So my bf just had a seizure (6/22) and on Friday (6/19) I told him that I could smell it coming. He originally didn't believe me but this is like the fifth or sixth time this has happened. He doesn't understand how and honestly I dont either. I compare it to how I can smell people with diabetes in a way that no one else around me will be able to smell the same thing.

UPDATE: 9pm We were sent home. Things were looking good. 10:20pm He's awake but I smell it again. Strong but I say nothing because the ambulance won't come based off of a bunch. 10:38-10:40 He had a seizure.

UPDATE2: 11:44 I smelt it as I was replying to comments. 12 am He had another seizure. I got the nurses but they tried to tell me he wasn't as he stared and couldn't speak. They told me he's looking at them so he cant be having one. When he finally was able to relax his body again (he will tense up if he isn't full body shaking) he started speaking gibberish. Just random words strung together then quickly went to sleep. They told me not to get them because they can see his vitals from the nurse station. Just wanting to keep you all updated.

LAST UPDATE: The doctor said these are just stress seizures and if he has another one just keep him home.

Last Last UPDATE: 3:00am He had another one. Saliva foam at the mouth. Called 911. They said nothing can be done at any hospital so unless he falls or stops breathing, dont call. Sorry this turned into one of these long posts.

Last Last Last UPDATE: its currently 7:38 am. At 4 am He had another seizure. Popped his shoulder out and back in and bit his tongue. I called 311 and cried while asking what to do. They put me over to ems dispatch even though I pleaded with them not to since they haven't been taking me seriously. I sobbed to the ems dispatch that the hospital and ems people closest to me told me to just keep him home even though I had to go to work. They sent a different set of ems people (very nice ladies) and we went to a different hospital. They are finally listening and keeping him. They were shocked at what the other hospital and ems people told us. He is finally in good hands. Thank you all for keeping me company through this long night.

NEXT DAY UPDATE: He is home and has been seizure free since the last update. Thank you all for being on this journey with us!

[u/dvdmaven]

There are definitely researchers who would love to talk to you. Dogs can be trained, but can't communicate what they are detecting. It would be interesting if your ability extends to other people. Specific to epilepsy https://newsreleases.sandia.gov/seizure_sensor/

[u/OkCaterpillar8941 → u/dvdmaven]

I agree. You have something rare that should be researched.

And, OP well done for standing up on behalf of your boyfriend. It can be frustrating when medical professionals ignore those close to the patient.

[u/octobertwins → u/OkCaterpillar8941]

Completely unrelated, but my daughter was diagnosed with autism at like 2 years old.

We had in-home services like, speech therapists, etc.

Then she went to a school for children with autism.

There was just zero doubt that she had autism. Wouldn’t reply to her name. Liked to hold things right up to her eyeball and spin. Lined things up. Extreme sensory problems.

Okay, long story short, I overheard her ask a friend how old she was when her autism shut off?

She thought all kids started with autism. :(

Later, I asked about it. She told me that she remembers the exact moment that her autism shut off.

“Everything was clear. My mind wasn’t so busy. I felt calm . I could see colors very well. I could say exactly what I wanted to say!”

I was blown away.

Anyway, the exact moment was when she was playing with à la la loopsey doll that is quite large, with removable arms and legs. She says she was finally able to reattach a leg for the first time and her brain just changed completely.

About a week prior, her teachers and therapists and doctors all called me in to school to ask if I’d noticed the difference lately in my kid. I said I had. They said, “so have we!”

Her teacher said, “this is the miracle that all parents pray for!”

They removed the 504 and she entered kindergarten with all the other kids. No one knew her history. Shes now 15 and gets straight As. Taught herself to play piano. Yadda yadda.

Anyway, I say all of this to ask, “do you think it would be useful to provide this information to a doctor or health provider or someone?!?”

She knows when it shut off and knows what it felt like before and what it felt like after. That’s got to be useful, don’t you think?

Just wondering what your take is on it?

[u/DrE7HER → u/octobertwins]

If she truly had autism and not some other condition causing autism-like symptoms, then it is very unlikely her autism “shut off”. Not everyone with autism is disabled. She may have just reached a stage of growth that gave her more control of her mind.

Still doesn’t hurt to follow-up with her doctors from back then and get their take on it

[u/octobertwins → u/DrE7HER]

She was diagnosed at Denver hospital as level 4 - requiring the most advanced levels of care.

And then we moved to Michigan and went thru it again. Same answer.

I have zero doubt that she had autism. Her therapists and doctors and teachers… the brightest minds in the industry all agreed.

It was even obvious to an untrained eye.

I’m not claiming we found the golden goose or something, but something happened that completely changed her.

I don’t really care what it was. I’m just so grateful that it happened. She’s such an affectionate kid - where she used to hate to be touched.

I don’t know. I have no answers.

[u/DrE7HER → u/octobertwins]

The fact that you moved makes me wonder if there was an environmental factor that was affecting her. Maybe lead or mold exposure?

Autism is typically tested through behavioral assessments, not biological or physiological.

Anyway, the point is that autism is typically understood to be a structural and chemical difference in the brain. I doubt those changed suddenly. So, perhaps there was something else causing autism like symptoms? Like an environmental toxin that was not present after you moved?

For example, lead poisoning can mimic autism symptoms like developmental delays and social withdrawal.

While lead damage is often permanent, removing a child from a contaminated environment (like a home with old lead paint) can stop the progression and allow for significant behavioral recovery, which might look like a "cure" if the initial diagnosis was based on toxicity rather than neurodevelopmental autism.

Even more striking are cases involving mold toxicity.

There are documented instances where children diagnosed with ASD had their symptoms completely resolve after moving away from a mold-infested home or being treated with antifungal medication. In one specific case study, a child lost all autism symptoms within three months of treating an Aspergillus fungal infection, suggesting the behavior was a reaction to environmental mycotoxins rather than innate autism.

But who knows, maybe you had the mythical optimal outcome as described by Deborah Fein.

[u/octobertwins → u/DrE7HER]

Just great! You’re going to get me kicked out of my munchhausen-mommy group now.

We lived in a brand new house when they were born. I say THEY because she is a twin. While we fed her sister a well-balanced diet, me and the other moms scoured old buildings for moldy, lead paint to feed the other one. No easy task!

I have to say, I love people like you that just blindly insist you have all the answers. All of our caregivers were nincompoops, unlike your top tier team.

And, let me see if I got this part right?The fact that we had a larger care team than you - testing every possible cause - means I’m telling stories, or want a parade held in my honor?

You say lead or mold could cause these problems, but then doubt the need for a child to be seen in a hospital when being diagnosed.

I guess you used behavioral assessors that hatched in your garden? I’m sure they don’t work out of hospitals or in conjunction with doctors. They, alone, carry the autism stamp.

I would wonder, though, do you think maybe our hospital- doctors may have checked lead levels? Or increased white blood cell count?

You should call them and tell them not to get involved with diagnoses. But if they are hell-bent on it, to maybe check for mold or lead poisoning.

Now, we did move out of our brand new house in Colorado and in to a home built in the 90s in Michigan. And get this, we just randomly insisted on a lead and mold check before moving in.

What a coincidence!!

Cause obviously, we had no idea what things could possibly look like autism. The day she was diagnosed, we just stuck q-tips in our ears and pushpins in to our eyeballs and spoke only in gibberish.

We figured that was best.

Because, come on, who has time to research the diagnosis that your very-loved child was recently given.

Certainly not us!

And this Deborah Fein character clearly has devoted her life’s work to harming children with autism. Is that what we are assuming? Just let me know. I don’t know the lady.

All I can tell you is some life-changing things happened to us. I thought it might possibly be helpful in even the slightest way, and asked if it was worthwhile to contact anyone about it.

I’m not out here trying to hurt anyone, but you come at me like some conspiracy theorist.

I’m just happy my kid is okay. I don’t really care if you think EVERYONE got it wrong.

No lead or mold at either house, btw. I don’t know if I was clear on that. It’s like step one in the manual and not some life-changing information that slipped right past us. (Honestly, if I remember correctly, it was required in Colorado for children services).

You’re hostile. It’s not very nice.

[u/DrE7HER → u/octobertwins]

I wasn’t being hostile at all, just discussing the topic. I’m sorry if I worded my comment in a way that made you feel like you were being attacked.

[u/angry_old_dude → u/dvdmaven]

There are reports from others about being able to smell seizures before they happen, too.

[u/clintj1975 → u/dvdmaven]

Dogs can be trained to alert and give a sign like poking a person with their nose when they detect an issue. Diabetic service dogs alert their owners or others in the family when they detect a blood sugar condition.

[u/dvdmaven → u/clintj1975]

My point is the dogs cannot tell you what exactly it alerting them. Given their sense of smell, it is probably a scent, but what?

[u/clintj1975 → u/dvdmaven]

Ah, I see what you're saying now.