The Beginning of Our Journey

It was February 23, 2008 and it was a typical day. Nothing out of the ordinary until, I saw Haygen fall to the floor. His eyes were rolled back and he was so still. I immediately knew something was wrong. A mother always knows when something isn't right. When he began acting like his self again (it was less than 1 min but it felt like an eternity) I picked him up, grabbed his diaper bag and we headed out the door.  I was just driving not quite sure where I was headed but I knew I wasn't carrying him to a local hospital.
 

 

This picture was taken before February 23, 2008.

We ended up at Arkansas Children's Hospital and after hours of observing him in the ER, they decided to send us home. They said he wasn't walking off balance and nothing looked out of the ordinary but if it happened again to bring him back.  I was FURIOUS!! As a mother, you know when something is just not right. The longer we sat there waiting to get our discharge papers, I kept trying to reflect back to when he fell to see if he had done anything different that morning or if in fact, he did trip over a toy or something but he didn't.  I am sure of it.

 

The doctor and nurse came in with the discharge papers and Haygen fell just like he had fell that morning, but this time the doctor witnessed it. Immediately we were admitted and sent to Nero.  They hooked him up to the video EEG (that was a complete nightmare) its very hard to keep a very active toddler from pulling all the wires off of his head.  He was on the video EEG for over a week.

This pic wasn't taken at ACH but that's how he was hooked up to Video EEG

 

As soon as he was on the video EEG, it was very clear to the neurologist, that he was having seizures.  Both times that he had fell, he was very confident to say that those were drop attacks.  Drop attacks (Atonic Seizures) are a type of seizures that are brief (usually less than 15 seconds) consisting of a brief lapse in muscle tone that are caused by temporary altercations in brain function.

 

We also learned from the video EEG that he was having up to 20-40 seizures a day even while sleeping, it also showed that he was having seizures that were not noticeable.  This started the beginning of all kinds of tests known to mankind trying to figure out what was causing seizures. The test were sent to other hospitals all over the US and the results of each test were NORMAL.  He was put on 3 different medications 2 of which were seizure medications.  We were discharged from the hospital on June 4, 2008 with a diagnosis of epilepsy. We didn't stay at home for long and to be honest everything after that just runs together to me it seems like.  We were always in and out of the ER, doctor offices and hospitals.  I was confused, angry, upset and could not comprehend all of it. 

 

This picture was taken at the hospital in April 2008.

In February 2008, Haygen talked, walked, ran, played, fed his self and all the normal things a toddler is suppose to do.  He met all of his milestones on time if not before. By the end of 2008, Haygen had lost all of his motor skills.  I just couldn't understand WHY. I kept blaming myself that I may have missed the signs but I knew I didn't. The only way I can describe it is like this:  It was like I had 2 babies and I lost one of them and I was grieving for that baby. Its hard to explain but its the worst feeling in the world. The hard part of it all was there was no answer as to why this was happening except for one thing a doctor said to me during those first 4 months at Arkansas Children's Hospital.  When all the tests kept coming back normal one doctor asked me for Haygen's original shot records, I was shocked.  I was not aware of all the controversy surrounding vaccinations, I just knew that you took your children to be vaccinated and that was that. I asked the doctor if he thought this could be caused from his vaccinations and his reply was "I can't rule it out and I can't say that it is" and with the look on his face I knew it was from the vaccinations.  I also found out that you do NOT have to vaccinate your children in the state of Arkansas. There is a wavier that you can sign and your children will still be able to attend school. 

At the end of 2008, Haygen was having 20-100 seizures PER DAY!! Yes I said per DAY, and those were the ones we could see!! When we were at home, I had to keep a log of his seizures and that was what my days consisted of!!! That was absolutely horrible watching your child seize and knowing there was nothing that you could do!! :(

After we were released from the hospital in June, I came home on my lunch break one day and the next thing I knew I was waking up in the hospital. I didn't know my mother, my boss, my sister and had NO CLUE that I had 2 boys!!! After a couple of hours, I finally started remembering things and I remembered having my kids but I couldn't remember putting Zan on the school bus or taking Haygen to daycare. The doctor told me that I had had a seizure and my potassium had bottomed out.  Other than my potassium bottoming out he said that stress played a huge role for the reason I had a seizure. So I couldn't even begin to imagine what my poor baby was going through having that many seizures a day. It nearly killed me just thinking about it!! :(

He is having seizures in this video.

 

2008 was a tough year for all of us but it was nothing compared to 2009, it was filled with many many dark days..........