Our Kids Stories
Our daughter Jayda is eleven years old and contracted encephalitis just before her fourth birthday which led to two weeks in a coma followed by a month of intense therapy at Rehabilitation Institute of Chicago. The seizures just got worse as time went on which led to her diagnosis of Lennox Gastout Sydrome. At Jaydas worse she was having 100 to 200 seizures daily! We have tried all seizure meds with not much relief as well as a corpus collastomy in which they disconnected half her brain and removed part and had no benefit. She has been on ketogenic diet for three years with minimal benefit. She has lost her ability to talk and close to losing her ability to walk as well as her eating.
Last year she went seizure free for two months for the first time in 8 years and she progressed very fast. She was walking with no assistance, get up and down from the floor on her own, potty training etc.. We need this opportunity to try CBD NOW to see if it can help her before these seizure do more damage. So to the Illinois Government , if you had to watch your kid go through this day in and day out, you would look at the situation differently, us parents that go through this have done everything we can for our kids and Charlottes Web is proving to help children with epilepsy, there was no law telling me that I couldn't let them disconnect half her brain. Why cant we try to give her this simple oil?????
A little bit about Mira : she was born full-term 38 weeks and four days. There were no complications during pregnancy. However directly following birth Mira spent 12 weeks in the NICU. What started as difficulties with breathe-suck-swallow eventually turned in to feeding problems as well as "episodes". Mira went home from the NICU on phenobarbital although her episodes did not really look like seizures. At six months old she was diagnosed with infantile spasms although her EEG never did have hypsarrhythmia. We have been through multiple medications and combinations of medications. Some seem to start to work, but then the honeymoon is over and the seizures find a way around the medication.
Currently Mira is on for antiepileptic drugs and seizes multiple times every day. She has been diagnosed with severe myoclonic intractable epilepsy. She also has other diagnoses (likely related to the same undiagnosed underlying neurological problem) of laryngomalacia, global developmental delays and cortical visual impairment.
The efficacy of the AEDs has been minimal. The possibility of the efficacy of cannabidiol is promising based on current anecdotal evidence. Mira is now 2years 9months old. She deserves the opportunity to try CBD. She deserves to be relieved from the toxic AEDs and their potential side effects. She deserves to be able to pursue life and her highest potential. She deserves all of this sooner than later while her brain is still growing and she is in her formative years.
Liam was a perfect, healthy 9 year old boy who was bright and athletic (played every sport out there!). Liam had what seemed to be your typical fever but when it lasted for a full week and spiked pretty high we went in to the pediatrition several times to be sure it wasn't anything else. Once his fever ended he was better but different. He was lethargic, sleepy, and not himself even though he started to resume normal activities (school and sports). Fever ended on a Friday and on Monday after going to school, homework, and shower, Liam fell over and had his first tonic clonic seizure. He was brought to the ER where he had another and then we were sent to to another hospital where he ended up staying for a month. Liam had viral encephalitis and it triggered an autoimmune response in his body. He went into status and was put in drug induced coma after a week of hallucinations, seizures, and vomiting. We were grateful that he came out of the coma fairly well considering what could have happened. However, he came out of the hospital a completely different person. He now has uncontrolled seizures and severe cognitive delays.
We have tried numerous meds (including one that may his beautiful blond hair fall out), steriods, IVIG, diets, etc and nothing has stopped this horrible seizures. These seizures have taken away his ability to participate in sports, his ability to have independence, and his ability to do school work without a one on one aide and many other support systems. We are still fighting for that ONE thing that will be our miracle. I hope and pray CBD could be our miracle.
Today Liam is a 14 years old today and begging for a "normal" life as a teenager who can go to parties, go to movies, be on a sports team, and just hang out with his friends without the worry of his seizures. He's lost 5 years of his childhood and I will do ANYTHING for him to have his life back that these seizures have taken from him!
Michaela is a happy little girl that suffers from Cerebral Palsy. She was starved of oxygen at birth which caused severe brain damage. She started having seizures at 2 months old. She is now 2 years old and has around 50 myoclonic seizures a day even on medicine and the ketogenic diet. Michaela takes 12 pills a day, which cause horrible side effects including anxiety attacks, drowsiness, cognitive impairment, liver failure, restlessness, mood changes, increased saliva, and a 30% chance of peripheral blindness.
On a positive note, there is something more natural out there that is showing remarkable success treating seizures with very little side effects. The sad part is we can’t get access to it because it’s against the law in Illinois!
We look at our daughter and we know she is in there hiding behind all those meds. These drugs are masking her happiness and ability to learn.