My son had his first seizure (febrile) when he was fifteen months old. At 23 months he had 18 grand mals in a little over 36 hours. He had a few breakthroughs but his last grand mal was in 2001. He began to have atonic, especially with high fevers. In December of 2004 at age eight he was weened off the Depakote. As far as I know he's remained seizure free.

Today he came in and asked me if it is possible to smell things when you are asleep. I said, "well what did you smell?" He told me that he smelled flowers. I continued to question him by asking what he was dreaming about and he said that he didn't think he was dreaming. So I then asked him if he smelled anything else ever. He said he smells "gyms" all the time. I asked him to explain it better and he said "ya know like running and smelling in the gym." I didn't want to put words in his mouth so I stopped questioning him.

I've called his doctor (new since the move) and am worried right now. These are the same partial seizures that I have. Once I did have a pleasant olfactory seizure, but usually it's the burnt coffee or stinky shoe smell for me.

How worried should I be?

I'd hate to give you any advice when it comes to how worried you should be. So instead, I'd say to just speak with his doctor and kind of let things roll that way.

However, I'd like to say that I do hope eveything works out for the best and it is very good your son is able to communicate with you and help to get this resolved.

I wish you the best of luck!

I've got an appointment scheduled with the Pedi Epileptologist...11/15. I hate to wait that long. I just read that his Pedi Epi Doc from Houston has moved to Tennessee.

Oh my, that's a long time to wait. Do you have an insurance plan that allows you more freedom (to change doctors, go w/o referrals, etc.)?

I'd probably bug them a bit more for an earlier appointment, but I am impatient when it comes to those things. Maybe you could be asked to be put on their call list if someone cancels, too.

when i have homework due the next day and i left it at school
i always start to worry, but my mom asked me"what can your worrying do right now to help the cause", and even though it took me a long time to fully understand this, but now i know... if it is going to be a long time untill your opointment, then be a little concerened, but dont worry your self to a point of insanity(thats what i tend to do...lol)

hope this helped

What an unbearably LONG wait. It's so much different dealing with your own health problems than dealing with your children's. Definitely a new level of scary.

I hope you can get into a good doctor and get a favorable prognosis and treatment. Where in Houston are you? Wanna share some neuro recommendations? I'm in Champions (NW Houston)

We just moved from Houston in February after almost 16 years back to my hometown of Fort Worth.

Are you looking for a Pedi Neuro or an adult Neuro? Michael's Epileptologist was at Hermann, Dr. Wheless who was fantastic, but I see he left for Nashville. I found Hermann/UT physicians easier to get in than the ones at Texas Children's. I saw William Irr at St. Lukes who diagnosed my hot flashes as seizures so I wouldn't recommend him. At UT there is a female epileptologist with an Indian name that was very good. I only saw her once, but she was very good. Let me look through my medical stuff for her name.

http://www.texasepilepsycenter.com/index.shtml

That is in the Med Center. The doc I saw is not listed there, but all these docs are specialized.

Good luck.

Julie

Hi Julie,
I'm sorry you have to wait so long for your son to see an epi I also have to wait 3 months if not longer to see my epi.
What your son is describing sounds a lot like a partial sz. also known as an aura sz. I have them often where I will smell odd odors like natural gas, or something burning. Then I get a nervous feeling in my stomach and I see colors flashing back and forth in my eyes, sometimes I even hear one word repeated over and over again. Once the aura sz. begins it often leads into a complex partial sz. for me but I have learned the moment I start getting the nervousness in my stomach to tighten up all the muscles in my body and make my hands into tight fists for a few seconds, by doing this it stops the sz. from happening. I wish you and your son the best of luck and May God Bless You Both!

Sue

julie,

are you from alaska? do you have 2 childrens also? same with me, my elder is a girl and the youngest is a boy who has this febrile seizure. i think so specially when he had a fever.