We went for the EEG and that the doctor said it had something in it, but I suppose there would be if he currently had a seizure.  After doing some research on my own awhile after the hospital, I found out that in febrile seizures there is a thing that will show up, and many will mistake it for Epilepsy.

The head neurologist came in to tell us that we were going home.  The EEG did show signs of something which he figured was febrile seizures and that he didn't think it was epilepsy.  I was relieved to know that Tommy did not in fact have Epilepsy.  We went home a bit at ease.  Keep his temperature down, that was easy enough.  Febrile seizures ends at the age of five and is not a long term thing.  So with that note we proceeded home stopping at the store to purchase our new thermometer and a bottle of Tylenol.  We had in our mind that we were going to fight this febrile thing full force and keep his fever at an all time low.  Lots of liquids no hyperactivity play and 24/24 hour supervision, until whatever cold or virus he had has gone.  Now watching your child sleep isn't that bad, givin you have plenty of wake-ups and a 25 lbs bag of Maxwell house.  It seemed a breeze.  A queen size bed was now made into a threesome comfy little home.  Hooking up the VCR in our master bedroom wasn't hard either.  Tylenol every 4 hours, we were styling.  

The next morning, after bringing him home, we woke up all calm.  Checking temperature, 37.5, OK Tylenol time.  We gave it to him after he ate his eggs.  Then poof.  Seizure, came in slow.  Arms stretched out, reaching for his father, eyes looking upwards, the shakes, lasted only about 15 seconds.  He went fast to sleep for about an hour.  I decided, okay, maybe we try his pediatrician.  He checked him, no fever then.  I told him he had 37.5 when he had the seizure.  Nope not febrile he said, its probably Epilepsy.  Oh Gosh! he gave me a paper to make an appointment to see for Epilepsy.  I called.  Sometime in December. OK I think NOT!

We went home relaxed him.  Kept him calm, did the Tylenol thing anyways, anytime it hit 37.5 like the hospital suggested.  After four days of nothing, finally no need for medication for the fever.  We became a little at ease.  Mindu the family did get use to having picnics for every meal in the bedroom or on the living room floor with many pillows surrounding us.  It became a game.  A game I wish would have ended. But one Friday morning 6 days after leaving the hospital basically diagnosed as febrile seizures, we had a little fall.  Tommy was just walking towards the kitchen and poof.  Body gives way, falling to the floor.  His chin felt the impact lots of blood, poor baby, but when he fell he did not blank out he did not loose conciseness, he was aware of the fall.  I saw it all this time, it was like he tripped but there was nothing there to trip over.  His arms did not do the automatic protection thing we all normally have, it was a limp fall.  I ran and screamed, Pete woke up and ran to us, Tommy in my arms with his chin on my shoulder.  Myself not aware of the damage done to his chin, I just comforted him and asked if he was ok.  Crying to me he said, yes.  Pete stood behind me checking his boo-boo.  Running to get a wet cloth and putting it on his chin, I rushed around preparing the route to the hospital in my mind.  Pete took him, I got him dressed.  The kids ready for school and off we went.  In the van he was fine. Oh Ya! by the way he had NO fever.  Strange.  Doesn't febrile seizures come with fever?  I started to panicked. We drove to the hospital, all went well he sat quietly holding his cloth on his chin.  Parking the van, I got out opened the sliding door to pick him up to bring him in my arms, his body gives way again.  It's like all his nerves give out.  Eyes open, just no control.  We got him in told them what happened in detail.  They took him in for the cut.  Made us wait a long time, I guess trying to find his file and all.  Couldn't of been to far it was 6 days ago.  

They did the eye nose thing again sitting on the examination table.  His body gave out again. OK! I'd have had just about enough, obviously something is definitely wrong in there somewhere and we aren't talking febrile seizures.

They stitched him up.  Which was excruciating to him.  I'm talking screaming like he never screamed in pain before.  Having a blanket covering his eyes and face.  He was freaking now, in my mind if this boy has Epilepsy he would have had a seizure for sure.  But no my little trooper pulled through with 6 stitches and a soaking wet head from the exhaustion of screaming blue murder.  Imagine in his little head, he must of wondered, what the heck are these strangers doing to me.  Poor baby!  Then the doctor on duty, after reviewing his file and listening to our description of these body let go's, he suggested a lumbar puncture  to see if there is any infection that the blood tests did not catch.  Before that they figure they would give him an MRI, since an MRI is a little more difficult than a CT scan and mom or dad cannot be there with him, and him being at such a young age.

They finally got a bed for him in the emergency observation, same place we were in the first time, a week ago.  I was holding him in my arms now, keeping him close not wanting him to stand at all, just incase.  They led me to the bed.  I sat him down onto the bed with his legs dangling off the side, cause I wanted to undress him and put him into them little gowns.  When his body gave out again, his head went towards the other side of the bed, where the bars were up.  Smacked his head on the medal bars.  I grabbed his body to bring him up and hold him, but this time he was out.  He wasn't aware this time and as soon as I grabbed him to me his arms went out around my neck and he started to shack.  I couldn't see his face but I knew what was happening, he was having a seizure.  I laid him down softly and screamed for the nurses.  They got there in a flash.  They started putting oxygen and the works.  I panicked started screaming and crying the nurse took me away, all I wanted was for him to be ok and this all over with, have my little boy back!  I called Pete at home, and he came right away !

So, it was up to the MRI floor we went, they gave him a sedative to knock him out for the examination, it will take at least 20 minutes, and he would have to stay still for them minutes and for a 4 year old, that is highly unlikely, and mom and dad cant stay with him during this ordeal so the sedative was a must.  I stayed with him until his eyes closed, then in he went.  I had to leave the area because it is a total secure place on which you are not aloud to be present in the same room.  Walking out of that room was the hardest, I felt I was being pulled away from life.  I cried and cried, why was this happening to my son, the feeling of total seclusion of life, the surrounding were meaningless, there was something very wrong with my son and for the first time in his life, mommy cant take the boo-boo away.  I felt helpless.  Seeing him strapped to that table and his little body being slowly pulled into a dark mechanical tube made me sick to my stomach, I wanted to run in and grab him out of there and run as fast as I could and make it all go away.   Reality snaps back to me and I sit and wait for the 20 minutes to be over.  Pete was on his way there, he walked in about 10 minutes into the procedure, so I felt better, not alone, I cried again, It seems that when ever you see someone so close to you the tears just come out much easier and it releases the hurt inside.  Maybe in anticipation of the other being able to comfort you so you can ease the pain that is so bottled up inside of you!  

The examination was over and out he came.  He was still out from the sedative, the doctor said there is nothing that they see in the MRI.  OK! great! now what?  So down to the emergency we go.  Tommy still knocked out.  They prep him for the lumbar puncture, which is a needle in his spine to extract liquid to distinguish if there is infection in the brain.  OH GOSH! this poor baby is going through so much!  Kind of like an epidural but not that deep.  Not that this information reassures me more, but they have to do what they have to do and all is better then none I suppose.  Results come back, all clear! Wahoo! or is it good?  No nothing anywhere.  So what is it?? they don't no yet!

So far he had in total 4 seizures.

Pete and I just sitting waiting for them to bring him up to his room, he would be staying for a few days.  Since it was the start of the weekend.  Not many things could be done.  The doctor told us, who did the lumbar puncture, that he should not be stood up leave him on his back or side flat for at least a full day.  It causes sever headaches.  OKEE DOKEE.  This we can handle, we can occupy him with stories and finger puppets.  Peter went home that night, two parents are not allowed to stay the night and Pete wanted the other children to be home with him anyways, so I figured sure, go ahead I can handle this.  I got my little cot propped it up right next to his bed and there ya go!  Blood pressure, eye exam, bright light being blared into your eyes while sleeping always a must.  Poor baby!  2:30 a.m. she came in.  I jumped up saw what was going on.  All of a sudden that's it.  Poof!  Into a seizure he goes.  What a way to wake up, poor cookie!  Lasted about 20 seconds and off to sleep he goes again.  So did I barely.  6 came quick, he was up and adam, ready to take on the world.  The nurse suggested wearing the helmet to sit him up, mindu I didn't want him sitting up, since the lumbar they advised against it but the nurse said sure, he sat up wanting to so much.  Then poof!  Plopped again, body let go, no seizure but no body control.  I laid him down of course after that he had to go to the bathroom.  Off we went to the washroom, very very slowly, didn't want sudden movement, call me paranoid, I don't mind.  Finished his business, walking back as soon as I got to the door of the room, poof! into seizure in my arms.  Oh Gosh! panic struck I ran out of the room screaming with him in my arms.  They all came running.  They took over, oxygen and all.  he didn't sleep after though, he started whining now like he was aware of what was happening to him.  I called Pete telling him there was two seizures so far.  He was on his way.  He got there and just sat with him.  A junior nurse or whatever you call them, came in wanting to do test with him, his eyes, reflects, blood pressure all that good stuff.  The best one "hey lets get him to stand I want to see him stand."  We suggested this a negative, since the lumbar was the day before and we were advised against it.  He couldn't even straighten his legs to stand, I just put him back in bed.  To bad for her little test!  Am not going to do it.  She went away.  Everything went OK till noon.  He was complaining a lot, the bed was moving, he would all of a sudden start whining and after the whining he begged us to change his bed, cause this one moved.  He was having dizzy spells, big ones,  due to the fact that we tried to make him stand, this is what the doctor said, that after the lumbar if he would attempt to stand it would cause sever headaches, so he was experiencing tremendous headaches.  So Pete would sit with him, he would make him lay down on him as he sat in the chair in his room.  He liked that, as long as he wasn't in that bed, it moved to much !  Then, these whining episodes turned into whining-seizures, so every time he would whine we new a seizure was coming.  He had a total of 5 seizures that day.  Every one around 30 seconds.  They wrote on his chart tonic clonic, I looked that up on the internet, its a type of Epileptic seizure.  Body spasms, stiffness.

They decided after all these seizures, that maybe they should get the neurologist in to see him.  Finally!  I guess they called him and he gave the orders to give him some Frisium, along with his Dilantin he was getting.  Which I did not mention earlier in here.  They started it before he went for the MRI I think, I can't recall exactly when.  They gave him small doses to start, but after the 5 episodes they decided to increase the dosage and add the Frisium.  Bingo, I guess that combination worked, he didn't have seizures for 2 or 3 days after.  Then he went for another EEG and all was clear.  Meanwhile they took a throat and ear culture and he had in fact an ear infection.  So there was antibiotics for that.  Now he was taking Dilantin every 12 hours and Frisium and Antibiotics every 8 hours, so basically Tommy was indeed full of medication more than I have ever taken.  Poor baby!  But It was working. 

They let us go home on the 27th of February, which was a Tuesday around 7 p.m.  Off to the pharmacy we went with bells on.  If it works were happy.  We just wanted our happy go lucky little boy back.  The next few days were hectic, we kept up with the picnics and the movies in our room.  We basically became hermits in that short time.  Besides driving the kids to and from school, we stayed home.  He wore his helmet always, he knew if he got off the bed he had to put it on.  It worked, we bought him a little Jeep he could sit in and push with his feet, he enjoyed that a whole lot.  If he could of slept in it he would have.  We tried to keep him calm, as much as we could but every time he wasn't playing he would be asking us if he could.  I felt bad, but we were just so paranoid after all that we had seen.  I guess we had cause to.  His medicines where taken like clock work.  We were very cautious about the times.  6 a.m. we were up giving him his Frisium then 9 a.m. his Dilantin, then again at 2 his Frisium again. At 9:30 we gave him the two together, which we had to wake him up during his sleep to give him.  It upset me when we had to disturb him, it took about 5 minutes just to wake him.  He was still sleeping in our bed, we couldn't get him back in his.  He would tell us that he had dreams in his.  In his head dreams were why he was in the hospital.  He associated all this with bad dreams.  So to get him back in his bed was a hard task to fulfill.  We did it though, Pete had to lay with him until he fell asleep, he was content with that.  I called the doctor and asked if we could give him his medicine before he went to bed so we did not have to wake him all the time, he said sure.  It would not cause any harm, so we were very thrilled with that.  In the morning we did not have to wake up at 6 on the nose to give it either.  He suggested when Tommy woke up, he should take it, so I didn't have to wake him up earlier.

He seems to have something wrong with his eyes now.  When he watches TV he blinks rapidly.  We have an eye appointment this month, along with another EEG, and a follow up with his neurologist.  We will see what he has to say about the medicine from his blood test he just took, last week!  The terror that I have is when the doctor will suggest to lower his dosage after the EEG comes back clear, which I hope it does.  The panic time is when he wants to reduce the medicine, that's when we sit and wait to see if he has another seizure and if he needs the same dose of medicine or it will be fine.  It's like a bomb ticking, you never no when it will go off.  

I recently went to a doctor for my anxiety, I have been experiencing a lot of nervousness, if Tommy moves differently or twitches the wrong way I panic.  Pete suggested I go, because along with the anxiety, I sometimes lash out at him, and the kids.  Which I don't find it fair to them. Our bills are accumulating, we do nothing and do not want to leave his side.  To actually leave him in the care of others is my worst night mare I feel If something happens and I am not there I would blame myself.  As much as me being terrified of seeing the seizures I would not want to be not present when, or if he had one.

Our house we live in now is a two story wooden floor house, very dangerous if he falls, we are looking everywhere for another place with carpet.  Along with the amount of rent in here, we have to move on account it is just drying us up.  Just his medicine is a big amount and now mine.  I am presently on pills to control my anxiety, called Clonazepam, they are affective but they do not last long enough.  I usually never took pills, I never had the tolerance or the stomach to take many.  In this case they are the ones I depend on to make it through the day without having a nervous break down.

Tommy's attitude has totally change his personality has switched from the spunky 4 year old to the angry aggressive type.  It saddens me to see him like this.  Before all this happened  he would never actually look at me and say "NO" now he does it on a daily basis.  A spanking isn't what I would even try to do, now.  The other children are seeing the changes and are asking why Tommy is aloud to do this, or that!  I am not to familiar with the procedures on how to raise a child with this condition.  As for the support from the family, there is none.  Since this all happened, they all seemed to disappear and not come around anymore.  We are dealing with this day by day and will conquer it together as a family.  Our little family can handle it and will pull through with or without the help from the outer family.  If you would like to email us and tell us about your stories and experiences with this sort of mishap please do so.