An Epilepsy Mother's Loss: Jan McDaniel Speaks

This is an interview with Jan McDaniel, who lost her daughter Carrie to a seizure. When I first met Jan on my CBD oil Facebook page she spoke of her loss, while ardently advocating for the right of people to access CBD oil for epilepsy. It moved me that this woman, who has lived every mother's worst nightmare, spends her time trying to prevent the same from happening to others. Here Jan bravely recounts what happened to Carrie and shares her vision for children currently living with epilepsy.

Suzanne:

Tell us about your connection to epilepsy.

Jan:

I was so clueless. At age three my daughter had her first seizure. One minute she was pushing her baby stroller and the next she was on the floor having a grand mal seizure. All I could do was call 911. I was told they would go away. She spiked a fever. Little did I know that at age five she would have another seizure, on her birthday.

Suzanne:

How did those seizures progress as she got older?

Jan:

They didn't at first, not unless she had any I didn't see. When she turned twelve she had her next event. This happened at church. She had another one that year, but she and her friends kept it quiet for a long time. At age fifteen she had one at a friend's home. It was dark. The EMS could not find the home and she was turning blue. By the time she arrived at the hospital her midriff area was gray. They brought her back from the brink of death. This episode caused brain damage. After that they became more serious and more frequent.

Suzanne:

I am so sorry, Jan. A lot of people don't realize that seizures can cause brain damage, even in older children. Can you tell us what happened from there?

Jan:

We got her home she could not remember the day of the week. She would ask over and over, "what day is today?". This went on for months. She could not remember where her clothes went.  She had crying spells and was frustrated. She was reading many books a week and went down to not reading at all.

The seizures became more often and lasted longer each time. We had many ER visits. After a while her brain did some healing. She put up her clothes and could remember what day it was. We did tests and the doctor said the causes of her seizures were unknown. After constant ER visits her doctor gave us a narcotic to use at home and another to use if we went out and she seized.

I was afraid for her to go to her dad's.  He lived out of Louisville and it was a very long way to a hospital.

Her friends dropped off.  Some were afraid after seeing a seizure. She had me and two great dads and we were her support system. I watched her 24-7. If I heard her laughing at her TV show I knew every thing was fine, but if it got quiet I would walk through the house and try not to let her know I was watching her every waking minute. Carrie lived a very isolated life. I finally had to take her out of the school system due to no radio many days on the handicapped bus and a teacher that pushed her too hard in gym class. After school she had a seizure and woke up in the hospital screaming, "I told Mr.___ I was going to have a seizure!".

She had a home school teacher come two times a week. Life went on this way. The seizures could last fifteen to twenty minutes or longer. She was put on more and more medication but nothing seemed to work sometimes. The medicine made her so tired and she slept a lot. Sometimes Carrie was so drugged she would stare out in space as if she wasn't there it. It was so sad and heart breaking for me.

We were at our wits end. I feared she would die. The doctor suggested brain surgery. My husband, her stepdad, also had seizures and brain surgery and it helped. So, we went for the surgery locally and I don't suggest this to anyone.

We went through a battery of tests and found out she was mildly to moderately impaired.  She went for a pet scan for the surgery and it went fine. At 5:15 the next morning Carrie woke up and wanted a drink of Coke.  The nurse gave her some and Carrie went back to sleep. She woke at 5:30 and started seizing. Medication was ordered for four hours. She turned blue and wasn't getting oxygen. The doctors gave an order to put her in an induced coma. When the medication was given to put her to sleep it was more than her body could take. She began to shut down. The coma should have been ordered within a very short window, not hours, and she was given too much medication. This was a Saturday morning. My daughter was twenty-two years old. By Sunday they said she was brain dead and they needed to remove the breathing machine. It was a very hard decision I had to make. My daughter died that afternoon.

Suzanne:

Again, I am so sorry for your loss, Jan. I think of you every day. 

When we first met on the CBD oils page and you spoke of this of this tragedy I was struck by your willingness to work on behalf of others. A lot of people might want to keep to themselves after losing a child, understandably. But you are out there advocating for better options for families at similar risk. Can you tell us what motivates you to do that?

Jan:

I lived knowing deep inside that my daughter's chances of living were not good at all. I had a funeral home director come to my home one day and I was looking at caskets. My daughter overheard us talking about a pink casket called The Princess. She came in the room and said, "I want that one". I knew I could not make decisions like this if I lost her. She did have a casket, not The Princess. They change the models each year. When you live the nightmare of intubation in your living room and clothes being cut off after an ER run, seeing your child lie lifeless on a life support, wondering if she will walk or talk or even know who you are when she wakes up - it forever changes a mother .

I have been where so many parents are today. It seems Neurologists can do nothing but write out something on a RX pad. When I heard about the CBD oil I saw a light, a ray of real hope for children like my daughter that traditional medicine cannot offer and hope for children living like my daughter. If I sat back and did not tell her story I feel she would have died in vain.  And, if her death can help one child suffering with epilepsy or change the mind of one doctor, mayor, senator or one voter out there, then I feel I have done what my daughter would have wanted me to do. I could not save her from death, but we now have hope for epilepsy that the doctors cannot even fully understand with all their modern technology.

I believe with all my heart CBD oil is one of the oldest medications known to man and has been looked over long enough. It is time for society to take this seriously. We are talking about many children out there that are suffering, and parents that for once are telling stories of joy and true miracles. These mothers can still buy pink tennis shoes and pink dresses, unlike my last purchase - pink and white roses to go on a pink casket. I know this may seem somewhat harsh but I believe in reality and not candy coating anything.
 

Suzanne:

I don't think it sounds harsh at all. You couldn't have stated it better. Thank you for sharing your daughter's story with us and for your advocacy on behalf of children battling epilepsy. People like you restore my faith in humanity every day, Jan. Is there anything else you'd like to tell us about your daughter, epilepsy, or your thoughts right now?  

 

 

Jan:

 

There will always be pain and anger in my heart, but how would I have felt if this had happened on my watch? Did god spare me something my mind could not have dealt with? I miss my daughter so much and do have more of a reason to go on.

I knew that marijuana helped epilepsy in 1992, but didn't know much about medical marijuana. I can see your fight to keep your child alive or to keep him from facing long term damage. I can tell you are doing the right thing. Never give up. I fought the Louisville EMS because they carried no Valium on their trucks to stop or slow down seizures. It was not a easy fight, but I stayed faithful, wrote letters, and followed up on my letters. There was a threat made if I went to the media, but I kept on. I knew when the Captain knocked on my door one day that I was being heard: one little woman in a wheel chair that lacked a lot education. Finally, I got a call that there was Valium being put on the trucks - so please be sure there is Valium on your EMT truck if you have to call them for help.

I would like to say I am so sorry people are still going through this. One problem is people, especially in Kentucky, just don't want to open up to it or believe CBD oil can work. They also fear this drug due to much dishonesty on our government's part and it not doing the right thing.

But the public is getting wiser and stronger now thanks to the parents and Colorado for doing the right thing. I will do anything in my power to help. And, remember you are not alone. I see and feel your struggles and I understand: talk, educate, be a power house for this CBD oil. Be honest about the cost and what can be done to put this oil in the hands of people who so desperately need this. Please don't sit and do nothing. Tell your story; tell your pain. Each and every voice, letter, and face at a meeting counts. I believe the faces, the head counts, have gotten many states this medication. It is not going to happen by itself. Louisville, Frankfort, and Washington need to see a large turnout, larger than they have ever seen. Please don't sit idle.

Last of all, be patient with the medications currently available that slow down your child's brain, even when you don't feel patient. It is as frustrating for the child. Tell your child how much you love him. Those three words were said very often in my home. And, remember all a child has is you, the parent to protect him and make him feel safe. Take a CPR course. Children's gave me one-on-one free. If you don't know what to do for a seizure ask, read. All we can do is our best but in the end it is the little things that matter the most: being there, giving time and love, and now, hope for a better future.