Faces of Medical Cannabis
Meet Pennsylvania kids who need medical marijuana!
Hannah is a 10 year old little girl with intractable epilepsy. Hannah’s diagnosis is currently unknown. She had her first seizure at 4 months old. Over the years, Hannah has developed various types of seizures. She currently has atleast 100 seizures a week despite daily seizure medication. There have been many times where she has had atleast 300 seizures a day. She is developmentally delayed, non-verbal, and not potty trained as a result of her daily seizures.
Over the course of the past 2 years, 5 year old Anna has been to three hospitals (John Hopkins, Hershey Medical Center and Pittsburgh Children’s Hospital. She is also under the care of a pediatric neurologist and a psychiatrist who have prescribed over 10 different medications in an attempt to lessen her seizures and anxiety. She has suffered through two diet regimes: Modified Adkins and Ketogenic diet and is currently facing the prospect of further testing and the possibility of having her frontal lobe and left emporal lobe removed ( 1/4 of her brain).
This is my beautiful Cameron. He is almost 6, but functions like an infant. He was not always like this. Cameron has severe Epilepsy with an undiagnosed mitochondrial disease. He used to be a strong, healthy and happy baby boy. His first seizure was right before his first birthday, and he started having hundreds daily at around 15 months old. Doctors have done extensive testing and have tried almost all available treatment options on Cameron.
Christopher is a 17 year old boy with tuberous sclerosis. Since the age of 6 weeks old , he has had daily seizures. At one point he suffered from 80-100 seizures every day! At the age of 2 1/2, Chris had part of his right frontal lobe removed in an effort to control his seizures. This surgery, plus an out of country experimental medication, kept him controlled for a little while, but at puberty, the seizures returned.
My daughter Diana started having seizures and receiving anti-seizure meds at 9 days of age. These medications are only partially successful at stopping her seizures as she still continues to have them at the age of 16. These seizures can be severe and cause her significant injuries such as requiring staples in her head on two occasions and knocking out her front teeth on two other occasions. Her medications have debilitating side effects such as cognitive delay and regression and even insomnia.
Elias is 3 yrs old diagnosed with Dravet syndrome. He began having seizures at 5 months & they said he most likely outgrow it at the time, but not in our case. His seizures progressed and while he is on 3 anti seizure meds, the seizures are still not control, he is still seizing multiple times on a weekly basis.
Jacks life changed a week after his 5th birthday when he was rushed to Hershey Medical center after having a seizure on our bedroom floor. Our previously healthy boy went in to “Status” basically one long seizure that medications couldn’t stop or control…He spent 3 months in the PICU at Hershey med (7 weeks in a pentobarbital coma). During that time doctors tried 10 different seizure meds and combinations of them, IVIG, Steroids, the ketogenic diet…yet he continued to have seizure daily.
Lorelei is six and was diagnosed with epilepsy four years ago. She has been on over ten different medications as well as a myriad of combinations of those medications and the Ketogenic diet, all with little to no success. Lorelei suffers hundreds of seizures every day. Her condition and her pharmaceuticals impact her life in so many ways, including, but not limited to, developmental delays, behavioral problems, sensory processing delays, emotional and social deficits and lack of impulse control.
Sydney Michaels lives in Southwestern Pennsylvania. She had her first seizure just days before she turned three months old. That seizure lasted well over 20 minutes. Within weeks, her seizures rapidly increased in number, frequency, and length. Multiple drugs & combinations of drugs were attempted and failed. New seizure typescontinually emerged. No answers were given as to why the seizures were occurring, only that she would probably grow out of them.
This is our daughter Callie. She was 4 yrs old when she got a flu shot and contracted viral encephalitis causing her to have 3 strokes, leaving her cortically blind, unable to speak or take care of herself at all. She had to relearn how to walk, eat, drink. She has had to relearn her life. She was making good progress until her seizures started a year after her strokes. Today, 4 yrs later, Callie has started to regress in some things due to the amount of seizures she now has daily. We have tried several different medications, combinations of drugs, etc.
My daughter Claire is 7. She began seizing at 10 weeks old, was diagnosed with infantile spasms at 3 months, progressing to Lennox-Gastaut at around 3 years old. We have tried many meds and keto, and currently have excellent seizure control with a cocktail of felbatol, banzel, and keppra. Her inter-ictal EEG remains messy though, and she has profound intellectual and physical disabilities.
Hi all! I am new to this group and gained awareness just a few days ago from a friend. I’d like to share my daughter Mollie with you. She is the coolest girl I know! She is an amazing judge of character and has mastered the ability to get her point across without the use of words. While I am truly fond of Mollie and all of her ways, I would move mountains to take away her seizures. She began having seizures at 2 months of age and we too have tried an arsenal of medications, the diet and surgery as means of seizure control.
This is our daughter, Annie. Annie started having Infantile Spasms, a devastating form of childhood epilepsy, when she was six months old. The constant seizure activity that occurred in her brain during this time of infancy has left her with many physical and intellectual challenges, as well as autistic-like behaviors. At nine years old, she has now gradually developed into, what doctors refer to as, intractable generalized epilepsy.
Allie is a year and a half and suffers from Dravet Syndrome. Her seizures started at 4 months of age, and she had weekly seizures averaging 25 minutes in length, the longest being an hour long, until she started the ketogenic diet at only 11 months old. She had a g-tube surgically placed at 7 months old due to medications taking away her appetite. Her medications also cause her low muscle tone, causing her to be developmentally delayed. She has never slept a full night. She had some seizure freedom after starting the diet, but her seizures have started back up, and she has developed new ones.
This is Jason. He was born happy and healthy near Williamsport, PA. He began seizing after he turned 2. Mildly at first, then by age 3 he was seizing up to 60 times a day! He lost his ability to walk and his speech became unintelligible. He would try to take a couple steps and suddenly lose all his muscle tone and fall flat on his face! This is called an atonic or drop seizure. He was diagnosed with Lennox-Gastaut syndrome. He had to wear a helmet for protection for 6 years! No more running and climbing up into his tree fort.
At 9 months old, three days before Christmas, Ryan was diagnosed with infantile spasms. Infantile spasms is a catastrophic form of epilepsy that typically results in severe developmental delays. Ryan had hundreds of seizures a day. He was admitted to CHOP for three days for numerous tests and to teach me how to administer the injections required for his medication, ACTH. ACTH is usually the first medication tried for infantile spasms. A typical course administered over a few weeks costs over $150,000.
Nathan is a lovable, energetic seven year-old boy who loves church, music, school, and Super Mario Brothers. He brings a smile to everyone he meets. Nathan had his first seizure when he was two weeks old and has been struggling with epilepsy ever since.
We have lost count of the number of anti-convulsant medications he has been on, none of which have been able to control the seizures. Nathan has been diagnosed with “Intractable Epilepsy” and “Mild Mental Retardation”. His cognitive ability has not advanced past that of a four year-old boy.
Thank you for letting me join this fantastic group! I have been looking for an organization such as this for almost three years. My family moved back to Lancaster from Colorado for my son Adam who has intractable epilepsy. I know what everyone is thinking, “why?” Here’s Adam’s story. He was born a happy and healthy little man until he turned five. One fateful October morning I was driving and looked in my rearview mirror to the horror of him having his first seizure. I thought he was dying. In a panic I rushed him to urgent care, we were one block away. By the time I got there, he was postictal.
At 14 months of age Michael had 10+ words, played interactive games, and was actually far ahead of his peers with regard to gross motor development. The he got his 15 month shots. Within less than 18 hours he was a totally different child. He stopped communicating with us, he cried constantly, and instead of looking at us, it was as though he looked right through us. Even his eyes changed color. As you can see from this picture, they had been the most brilliant shade of blue, but they turned grey.
My name is Diana Briggs. I’m blessed to be the mother of Ryan who is now 13 years old. Ryan suffered an Anoxic event at birth that resulted in multiple disabilities. Ryan has been diagnosed with Hypoxic Ischemic Encepholopothy,C.P., M.R., and Epilepsy.Ryan has seizures everyday. on a good day he has approximately 100 tonic clonic, simple partial, and complex partial seizures.On a bad day we’ve charted over 400. We have tried over 10 conventional medications to control his seizures.
Our son Scottie is 28 years old and suffers from Dravet syndrome, one of the catastrophic epilepsy syndromes. He developed seizures at 17 months old and has been uncontrolled for more than 25 year despite being on over 25 medications, vagus nerve stimulator and ketogenic diet. He had been seen at some of the best Children’s Hospital of Pa. University of Pennsylvania, Johns Hopkins . He is currently on 3 seizure medications that do little to control his seizures. Over the years he has suffered more than anyone should have to suffer in their lifetime.