Dravet Syndrome Stories From Those Who Know

Hailey's Story

My daughter Hailey is now 31/2 years old we just found out a couple of months back that she has Dravet syndrome.

At first the news was devastating, who am I kidding it still it is.

Hailey had everything text book to this syndrome from day one when the seizures started the only reason we found out was changing and changing doctors till we found one that actually wanted to know why instead of just treating with tons of meds. Which of course was not working. They were putting her on all of the meds that are listed that make the seizures worse like lamictal. We actually took her off of that our self.

The part of it that upset me the most is out of all of the doctors they just wouldnt listen to us about her over heating so quickly the linked that to to topamax. Or the over excitment would cause her to drop into a seizure. We felt like the doctors thought we were over reacting.

Now that we know what she has that is the sad part also you always have that thought in the back of your head that there is a chance she will out grow it, now we know it will be a life long ordeal.

She is still having long tonic clonic seizures we have to give her rectal diastast almost everytime.

Have just starter her in spin early education.I stay at the school everyday out of sight of my daughter of course, I just can not trust any one else with my childs life they are starting to understand that someone has to be beside her at all times, and they have to calm her down and cool her off when ever needed. I have some much more to say just not sure where to start.

Hailey was a happy normal baby when we brought her home. At 3/12 months old the first time I ever put her in her crib to sleep all night, I woke up at 630am to feed her put her back to bed and around 700am I herd a strange noise coming from her. I actually thought she was just playing and ignored it for a few min then I realized something was not right I walked in to her room and saw she was jerking. I immeaditly picked her up and called 911. We live in Colorado at that time we were pretty far in the the mountains it took 911 45 min to find my house she seized the entire time when they pulled in the drive way she stopped breathing and I gave her cpr until they got in the house. From then the flighted hailey out and left me behind I had to call my husband at work once he finally made it home we made the very scary 1 hour drive down to the hospital. When we got there they did all the normal test cat scan neuro exam and wanted to send us home. I threw a fit and said they would put her in the hospital and find out what was wrong.

Everything went down hill from there the hospital stay the doctor said she showed a few spikes on the eeg but nothing to alarming so all he set us home with was rectal diastat which was to be administered after 4 to 5 min long seizures.

When we got home she was fine for about a week she had one incident were her left arm started moving out of control my husband called the doctor they said do not worry about it she is a baby they do funny things.

One week after that I took a picture of Hailey and she went in to another full blown tonic clonic seizure.We did give the rectal diastat and called 911 again.Once again it took them 45 min to get to the house. This time they put heron triliptal in the emergency room and sent us home.
We packed our bags and moved the next day down to a city. My husband and I both noticed since the meds were given she was getting worse seeing very strange things. Hailey started twitchy like a hand puppet her hands her eyes her legs and feet nonstop all day,by the end of everyday she would have a very large tonic clonic seizure. I called the doctor every day the just kept sayng to give her the diastat. i was not ok with giving this to her everyday.
I was telling the doctors what was going on the did not believe me told me to get a video camera and capture her doing it, ok no problem she did it all day long. When we finally got to our appointment in less that 10 min Hailey had showed the doctor almost every seizure possible he couldnt believe what he was seeing had her put in the hospital right away. We spent 3 weeks in icu this time changed some meds did alot of loading doses did every test possible to try to figure out why this was happening. Of course no reason.

FRom her on we was in and out of the hospital and ambulances over and over again. Hailey was on so much meds that seemed to have no effect on controling the seizures at all just noticed maybe they were delaying her speech. I felt so helpless to just have to watch my baby suffer. I quit my job to stay home with her so I could be there at all times.

The worse was when I went in to preterm labor with the 2 child, Hailey was almost 2 at the time they were trying to stop my labor, when I got the call Hailey had a seizure, ok she does that and family knows how to handle it, then the call was she was being flighted to the hospital I was in Colorado Springs, At this point I told the nurses to disconect me I need to go downstairs to trauma my daughter was being flighted in. When I walked in to the trauma room Hailey was not breathing on her own she had a tube down her throat me still being in labor they should of warned me really. I dropped to the floor, I couldnt understand what happened. Hailey was moved to icu and by 4am she was ready to have that tube out.

Found out later it was the new meds they had put her on keppra her body did not like it. The keppra actually changed her seizures caused the hard left stare and her oxygen levels would drop to the fortys.

Hailey is now 3 1/2 we just found out that she has the Dravet syndrome devastating news but at least we know can treat it better.Hailey is actually not doing to bad the seizures have slowed in frequency, but are still here no more titches just the tonic clonic.

I have since enrolled her in spin (early childhood education) she is doing great.

I would love to talk to other parents that are dealing with a child with Dravet Syndrome.

Tami King tatarpot@yahoo.com

Submitted 18th October by Tamar King.