2017 Walk to End Epilepsy

Audrey's Warriors

 

Audrey has never been a quiet child in almost 11 years. She has always been very active and talkative. Earlier this year I started noticing times when she would be talking and she would go quiet and it was like watching her disappear. She would just stare into space and not speak or blink. You could snap your fingers or call her name and nothing . Something inside told me she was having seizures. People would say 'oh its ADD'. As her mom (and someone with ADD) I knew it wasn’t that.


In June we were in the mall one night and Audrey had a seizure I decided at that moment to find a neurologist. I found Dr Patel in Pasadena and called them first thing Monday morning. Her office was so great and got us in that week. By that Sunday we were getting ready for Audrey's first sleep deprived EEG. We woke up at 4:30 am the next day for her first test. I remember thinking 'I can’t believe we are having to do this.' Audrey was so nervous it was making her stomach hurt. We get to the office and they started explaining what they were going to do and how they will put lead wires all over her head. Audrey was starting to relax, taking pictures and trying to have fun with the process.  They got her settled and then they give her a pinwheel to blow on. By her third blow her eyes rolled back into her head and her body got super stiff. It was like nothing I have ever seen. It was so hard to watch her go through that . I have only seen the absent seizures so this was new for me. They proceeded with the strobe light after and then had her sleep for 20 min. Sitting next to her in the dark while she slept I cried. I was in shock we were there. How could this was happening to my baby. I NEVER could have guessed just a few months ago we would be here. 

Two days later we got the official diagnosis. Audrey has Epilepsy with Absent seizures.  The doctor showed us a picture of what Audrey’s EEG looked like and sat us down to explain to us what Audrey could do and could not do without one on one adult supervision. The whole time she went through everything I kept thinking 'this can’t be happening.' I mean once you get passed SIDS when they are infants I thought we would be golden. Instead I am here having a doctor tell me my daughter may have seizures with convulsions. Explaining to me how her lips will turn blue and I just kept telling myself 'don’t cry, don’t cry in front of Audrey.'

Two days later we started on her meds and that has been a real challenge. By the third day she was getting sick and laying in bed. She was depressed and felt like she was being punished. One night as she went to take her meds she asked me if she was going to die. There is NOTHING in life that will prepare you to hear your child ask that and be so afraid. No words seemed to make her feel better.

We got her meds balanced out and she started to feel better. Meds are a daily battle. They need to me adjusted up or down depending seizure activity.  It seems once you think your settled on a dose she has a seizure and we're changing them again. 

One day as we were driving and Audrey started goggling Epilepsy. She told me they had a walk to raise money for Epilepsy and asked me if we could do it. She texted her family and friends and asked them all to join. Her step mom set up the team page and off she was. Audrey has an excitement and energy I haven’t seen since she was diagnosed. She put it on social media and started walking around talking about it and asking people to support her. This walk has given her a forum to not only raise money to help but a place she can place good energy in and tell people about her diagnosis and not feel ashamed or embarrassed . It has been great to see her like her old self. She still has days when she is tired and down, but we have much less of those days and more happy days now . We are still in the EEG and blood tests phase of this journey. We are more hopeful and making the best of it. I tell Audrey we have to have faith God knows where he is taking us.
Susan

 

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