Community Forum

I am barely wrapping my mind around this!


I am having a hard time knowing what to do! Any input would be wonderful. I am sorry this is so long! A year and a half ago - my son - who was 4 and a half years old at the time, got a really bad cold with fever. He told me he wasnt feeling well- his eyes got really red, he said his head hurt, then he had a seizure (looked like a grand mal). I lost my mind that night (not knowing what was going on) called 911 and ended up at the hospital where I was told he had a febrile seizure and that it would liekly never happened again. 

About a month and a half later, we were at my mother's house and she wanted to go for a walk with my son. He insisted he did not feel well and was tired. My mom pushed him into going insisting he just needed some sunshine etc. They were gone for about 1/2 hour. When they returned, my son told me he was tired. He went up the 17 step flight of stairs at my mom's house (a straight shot) then suddenly came thundering down head over heals. He landed at the bottom on the tile floor, and opened his mouth to say something. THen his eyes glazed over and he kept opening and closing one side of his mouth. He turned blue (lasted less than a minute). Of course I called 911 and this time they thought he had a complex febrile seizure. He presented with a fever of 101.1 at the hospital. 

THey did an CT scan and said his brain looked ok. THey did an EEG and the doctor who read it said that there was some abnormality but that it should not be interpretted as epilepsy.... (what ever that means!). I took him to one neurologist who wanted to put him on drugs right away. I took him to another one- who is an epileptologist who said maybe wait and see what happens if I had the stomach to. I decided to wait because I was scared of what the drugs could do to him.

I immersed myself in as much info as possible. I started giving my son omega 3s, tried to up his magnesium through food, made sure he was getting enough rest. He had 1 fever about 6 months ago. He was sitting at the table and he said his arms were too tired to eat. I lifted him and put him on the couch. I checked his temperature- it was 101. I gave him tylenol, then basically shoved gatorade down his throat and put an ice pack on the back of his neck. He turned blue, his heart was racing, he was lucid the entire time though- talking to me- trying to calm me down actually. I called the doctor- he said maybe he was growing out of it.

I had gotten a bit lax about the omega 3s (I wonder if that has anything to do with this) last week (my son is almost 6 now) and this a year and a half after the 1st episode, my son got a stomach flu in the middle of the night. He was throing up a lot. He absolutely refused any liquids after and fell asleep promptly. He woke up around 9 am. I tried to get him to drink. He would only sip a little gatorade every now and then and a little water. He then threw up again. At 11am, he said he felt really tired. I could see he was having trouble even walking. I noticed his eyes were very red. I tried to get him to drink more but he would not. I put him to bed next to my husband. A minute later, my husband yelled out that he was seizing. It was like the first time- his whole body involved. While he was seizing, my husband touched his head and said it felt like it was on fire. I grabbed an ice pack and put it on the back of his neck. When the paramedics came- they checked his sugar level and said it was normal. They touched his head and said it was hot. They said his core was very warm. By the time the hospital took his temp, they said he was normal. His blood test showed his potassium was below normal, his sodium was at the top of normal, he creatinine was above normal, and he had ketones in his urine. This was pretty much how his labs looked both times before. He was dehydrated each time as well.

I emailed the ped neurologist and he wants me to consider meds at this point. I actually feel more confident than before that he seems to only seize during illness and specifically when dehydrated. All 3 times he did not drink water earlier before the event and complained he did not feel well. Actually, my mother did not tell me that all the way home from the walk (the time of his second seizure) he was actually crying- saying did not feel well and could not walk anymore. I dont know if I should give him meds or not!  I am so confused!

I have a physical for him coming up. There are some other issues I am worried about (which may or may not be related to this issue):

-he seems to be very intolerant to heat

-sometimes we are all cold (A/C on full blast) and he is hot. We are dressed with pjs- full length pants and long sleeved shirts with blankets and he wants to sleep in his underwear with no blanket.

-sometimes we are all warm and he is freezing needing winter socks and several blankets on him.

-he sometimes has really bad stomach pains which come on suddenly. He will blanch when they happen and has to lie down.

-he seems to tire much quicker than other kids his age

-he complains sometimes that his legs are too heavy to walk or that he cant really move them

-he had an incident where he was running with other kids and he kept having to stop when no one else did. As we walked back to the car he said he needed water and then proceeded to almost faint. I made him focus for the 2 more steps to the car- he drank an entire bottle of water then was fine.

-he has had a couple of instances where his stool was white 

-his skin is very dry and he is very pale

- he got eczema around 18 months and every now and then has small flair up

(he also has amblyopia and trouble with fine motor skills)

other than all that he seems like a perfectly normal 5 year old boy... 

I am planning to try the gard diet next month to see if anything changes when I do- maybe his stomach will stop hurting him, maybe his skin will be better....

I don't know. I have noticed that omega 3s seem to help with his stomach and his energy.


Anyway, thank you for reading if you made it to here. I am not sure what the future holds. I am scared of the drugs because I read lots of stories about people who keep having to take more and end up taking a bunch and dont seem better... its nice to hear when they do work! I don't know what to do or believe anymore. It really is scary and frustrating! I do try to remind myself there are people dealing with so much worse and try to count my blessings. Has anyone tried medical marijuana- there is that Charlottes web strand?


THanks for listening and hug and support to all of you on here. 



Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

24/7 helpline