Monday, December 30, 2013

Febrile Seizures

Today Henry had another seizure.

This is number eight since the  end of August.


My sweet little boy has and EIGHT freak'n seizures the past 4 months.

It has gone something like this.

One in August with croup.  This was the first and at the time we were not even sure he had a seizure because we caught the tale end of it because it was at night and this was all new to us.  But the ER doctor said it may have been a febrile seizure (a seizure brought on by a fever)  We read up on it.

Then the end of September, he had another one at night when he had croup AGAIN.  This time we saw more of the seizure and knew.

Then the saturday after Thanksgiving he had three.  THREE in one day.  He had a sickness and had a seizure at nap so we  went to the ER again and they diagnosed the ear infection.  However his temp got to a scary 104 on the ride home and he had a seizure in the car and again at home.

Then a week ago Henry had a bad cold and had a seizure at night and then again in the evening when I tried to give him a bath. NOTE: IF YOUR KID HAS A FEVER DO NOT GIVE THEM A BATH!!  If they shiver even a bit their body thinks it is cold and their temp rises and this is what caused his seizure because his temp was rising.

That brings us to today.  Henry had been feeling better.  His fever broke Christmas morning and the last few days he has had a cough and lots of snot, but no temp.  He was in a great mode this morning.  His temp was a perfect 97.3 and he was happy to go to school.  Then around 4:15 I get a call from his daycare and just knew.  Henry had just had a seizure and was coming out of it.  I can't even remember if I turned my computer off, I just grabbed all my shit at work and left as I talked to the teacher.  Apparently he had been outside playing and was running around when they noticed he stumbled a few times and then fell to the ground as the teacher was grabbing for him.  She noticed his eyes rolled in the back of his head and him shaking.  The shaking lasted a minute or so but his body was tense for about 10 minutes. (longer than normal) They had carried him inside while they were talking to me.  sigh.

The thing about this seizure is we don't know if a temperature was involved.  When I got there he didn't feel hot.  But he had been outside playing in a snow suit, coat, mittens, did he have a mild temp and overheat?!  Is that even possible?!  (the doctor we talked to said not as likely, but i still wonder.)  Was there a temp and it just went down or is this infact a real seizure?!?!  

We took him to the ER and he still didn't have a temperature.  He also showed no signs of an ear infection (though those come on quickly and he could always have one in a day), no respiratory problems, no major red flags or concerns....well except for the biggest concern, that our child has had EIGHT seizures the past 4 months with SIX in the last month and ONE that we don't have a cause for.  Febrile or not, that is WAY to many seizures in a short amount of time for a two year old.

At this point we have NO answers.  Three trips to the ER, many doctor appointments, and we have no answers on what this is.  And in the meantime we have a doctors appointment not scheduled until the 28th to get him into a neurologist.  It was agreed tonight that myself and Henry's doctor will try to get an urgent appointment.  If nothing, we are looking in Cleveland or Columbus.  This child NEEDS to get into a doctor.  Like yesterday.  We need to make sure he is OK and figure this all out.

For me I am a mess.  As I write this post I have looked into his video monitor no less than 8 times a minute.  I crank it up so loud at night it is almost impossible to sleep, not like I can sleep anyways.  I take his temperature ALL the freak'n time. I even went in his room tonight and took his temp while I wrote this.  I can't concentrate on anything but him.  I am tempted to pull him out of daycare so he isn't around germy kids.  The questions in my head.  What it could be.  What it couldn't be.  What does it mean for him and his future.  Yes, things I shouldn't think about but I do.  I am a total mess and with no answers and him having a seizure with no temp or a very low temp throws a curve ball in everything we have thought the past few months.  New questions and new thoughts and answers.

My little boy.  My sweet, sweet boy.  I hope we find out answers really soon.

(On the upside he had his first Popsicle today and loved it!)

Update: December 31st in the ER again with seizure 9.  On the upside we got seizure medicine and an earlier Neurologist appointment.


  1. Big giant hugs. I'm crying for you. I wonder why he keeps getting the cold with fever too. It is so scary. You are a wonderful mom to be on the ball with this and sticking up for Henry's needs. The 28th was ridiculous. Henry is lucky to have you fighting for him! Hang in there! May Thurs provide you with positive answers and may the medication stop the seizures so you and Henry can both get some rest and relaxation the rest of the week. Hugs, hugs, hugs!

  2. Oh Wow! I am so sorry for all you are going through. This must be absolutely terrible. I can't even imagine how you are staying sane during this. I hope you get answers and firm answers. Praying you get rest and recovery like NOW.

    Sending you love and hugs. . .

  3. We've talked since you posted this but I just have to tell you again that I'm thinking about you.