Discussions By Condition: I cannot get a diagnosis.

What is wrong with my son?

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: melcmch
  • May 18, 2010
  • 05:44 AM

Hi, This is my first time posting although I've been on this site reading many, many hours. My 14 yr. old son has been having these episodes and we have been to several docs. I have seen a lot of similar discriptions of episodes but none that are exactly the same.

About a year ago, my son told me that when he stands up after sitting for a while, he gets this weird feeling in his head and smells a really strong smell. He has allergies and asthma (which seems to be under control, hasn't needed meds for asthma in several years) and I thought maybe he was getting a sinus infection. I told him to drink lots of water and to make sure he took his allergy med. He didn't mention it again. Then about 3 months ago, he passed out at a meeting after school. When I picked him up, he said he had really strong waves of nausea, that came on very quick, then he got a visual, that looked like a lava lamp with colored blobs morphing, quickly followed by a really strong chemical like smell, then he passed out. He was only out for a few seconds (so the report says) and when he came to he felt fine. No headache, not tired, nothing. When he explained it to me he said the visual and smell were the same as what happened a year ago and that he gets the visual and smell alot but that this was the first time with the sick feeling and passing out.

I researched his symptoms when I got home and came up with seizures or brain tumor. Took him to the pediatrician who sent us to a pediatric neurologist. Had an awake/asleep EEG. Had to sleep deprive him prior to testing, so much fun!! Came back normal. Neuro sent us to pediatric cardiologist. Did EKG. Came back fine. Cardiologist doesn't think it's heart or blood related. He doesn't feel dizzy or unstable. Actually doesn't get any kind of altered feeling. They only last a couple seconds and sometimes he only has the visual, no smell. Most of the time they happen shortly, but not immediately, after standing. I have seen him while he's having one and I can't see any change. Wouldn't even know he was having one.

After EKG, the neuro orders an ambulatory 3 day EEG. He gets in put on Fri morning and wears it till Mon afternoon. He has 10 recorded episodes. Just got the results and there was nothing abnormal on the entire recording. Nothing changed during his recorded episodes so now they are ruling out seizures. Next test is MRI and more lab test. They want to try him on Topamax (not sure how it's spelled) thinking it may be migraines without the actual headache. I have asked to wait until school is out since they said it could cause him to have a mental fog.

He is other wise a normal, healthy kid. He is in the honors classes, makes great grades, wrestles, plays football and golfs. He claims to have been having these episodes for at least 2 years although he can't remember when they started. He may be having some concentration/memory issues or might just be teenager stuff.
If anyone has any ideas or has experienced the same stuff please reply. He's not bothered by these as much as I am. I thought for sure they were seizures!

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4 Replies:

  • Strange illness... i hope you manage to find out what is going on with him. I'd think seizures too esp with that smell coming in... im wondering if all kind of seizures can be picked up by that test or just epileptic ones?? i've heard of people getting migraines without the headache. let us know what you find out there. Migraine people can get weird smells etc i have a postural condition (happens when standing) in which i pass out (and it also in my case makes my sight go weird and see blobs and that at times right before an episode) called POTS (postural orthostatic tachycardia syndrome). i think it thou is highly unlikely your son thou has this condition seeing he dont get dizzy, headaches or tired with the episodes (It thou can give weird feel in the head and nausea). i havent heard of anyone with POTS getting a weird smell either... he dont fit any form of classical POTS picture. If you did thou still want to make certain to rule this out, it can be easily done by monitoring his heart rate to postural changes. More likely to be seizures or migraines....
    taniaaust1 2267 Replies Flag this Response
  • Oh, I almost forgot. These episodes happen 3 or 4 times a day, every day.
    melcmch 2 Replies Flag this Response
  • Epileptic seizures.He should see a Neurologist or a Pediatrician
    Anonymous 42789 Replies Flag this Response
  • Epileptic seizures.He should see a Neurologist or a Pediatrician Thank you for your suggestion. He has been seeing a team of Pediatric Neurologists and Cardiologists at a childrens hospital. They have ruled out seizures. He has had several different types of EEGs and he has had many episodes that he was able to record while hooked up to an EEG. The doctors told us that there weren't any changes in his brain activity during the recorded episodes. I'm stumped!
    melcmch 2 Replies Flag this Response
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