Our daughter Chloe is a beautiful 9 year-old little girl full of life and love. She was born 4 ½ weeks early in the spring of May 2006. Although she arrived early by C-section, all indications were that she was a normal healthy baby and after 5 days in the hospital we were able to take her home.

At nine months we began to notice that she wasn’t reaching the “milestones” that were expected for a developing child. Her right hand was always in a very tight fist and she wasn’t holding her bottle. At her routine check-up the doctor brushed it off and said she was fine. A few months later, she hadn’t begun to crawl, but instead
she would sit on her bottom, wrap her right leg behind her and bounce across the floor propelling herself with her left leg. At her 1-year checkup we demanded tests be done. After a CT scan was performed we learned that he had suffered a stroke in utero, leaving her with a diagnosis of Right sided Hemiplegic Cerebral Palsy. When asked what we could do to treat her condition, we were told that she would never be an Olympian, she would always walk with a limp and she would be in therapy for life. We put our faith and trust in the Doctor and went home thinking this was just a small dip in the road of life and we would get through it. Little did we know that that road would need
4-wheel drive and a lot of horsepower to overcome.

We began therapy right away and saw some improvement but always felt like we could be doing more. In December of that year, we learned of a study being done at Duke University, where Doctors were using umbilical cord blood to reverse the effects of Cerebral Palsy. Luckily we had banked Chloe’s cord blood when she was born. She received her
cord blood stem cell reinfusion on May 27, 2008 and made huge progress in her recovery. Life was awesome or so we thought.

About 3 years ago we began to notice problems with Chloe’s behavior. She was never a good sleeper and was tired all the time as a result. She would have fits of rage screaming for hours at a time and she was falling very far behind in school. In total desperation we took her to the Stroke Clinic at Children’s Hospital here in Denver. After
EEG’s, and a battery of other tests Chloe was diagnosed with a rare form of Epilepsy called ESES (Electrical Status Epilepticus of Sleep) seizures as well as Complex Partial Focal Seizures during the day (staring spells). ESES seizures do not allow you to enter into REM sleep where your body and mind can truly rest. Chloe was only
averaging about 2 ½ hrs. of deep sleep a night, to say that sleep deprivation was killing her would be an understatement. The Focal Seizures were constantly interrupting school work and learning during the day. We began treatment with a drug called Keppra in an attempt to reduce the number of seizures that she was having at night. The rage and behavior issues escalated to the danger point, which we learned is a major side effect of Keppra. At this point the Doctors decided to put Chloe on Lamictal, another antiseizure drug while we began to wean her from the Keppra. After several weeks we did see some improvement in behavior but no improvement in sleep, energy and school work continued to suffer. Doctors wanted to try a Valium sedation on Chloe in attempt to reset the brain. A valium sedation is basically inducing a coma for 72 hrs and sending her home on a low dose valium for several weeks after. We refused and decided to take her to a Doctor in FL who specialized in Epilepsy.

After many tests, the Doctors determined that the only drug that has been proven to treat ESES seizures is Depakote which we began right away. After being on the drug for several weeks Chloe’s hair began to fall out in clumps, again another side effect, we didn’t see much improvement in sleep and behavior issues were again at an all time
high. We started to think we were at a dead end. Then one night we saw a news story on Charlotte’s Web Hemp oil and I knew it would be the answer we were looking for. I began the process to add our name to the waiting list, made all appointments to obtain our red card and waited and waited and waited. One year later we received the email letting us know that we could place our order. Chloe began CWHO in Dec of 2014 and her life was changed forever. She now sleeps through the night and wakes up refreshed, she is off all pharmaceuticals, her test scores have soared and she is once again a happy seizure free little girl. We are so grateful to live in the state of Colorado where we can treat our little girl with a natural drug.

—The Realm of Caring

Comments are closed.