Our amazing Jesse James Isaak Mosser, Age 9. Kind, sweet, forgiving, smart and affectionate. Jesse has a 10p15.3 Chromosome Deletion, Epilepsy, High Functioning Autism (due to years of interventions mostly diet and ABA), Asthma (no issues the past 3 years because of diet), ADHD and anxiety disorder. Common Characteristics of Jesse’s Chromosome Deletion are an increase in seizures as he ages.
When Jesse was 1 year old, he had his MMR and Varicella vaccinations and became lethargic. We saw his Pediatrician; they said he would be okay. The next day, Jesse went into status. He was life flight flown to Blair Batson Children’s Hospital in Jackson, MS where he was intubated for 2.5 weeks and recovered for another 2.5 weeks. Diagnosis of illness was viral meningitis (varicella vaccination) and double pneumonia. We had to wean Jesse off the coma meds with methadone.
On October 4th, 2010 after moving to Colorado from GA (we are a military family), many changes and increased elevation, Jesse complained of not feeling well in the morning. I kept him home from school. At 2:50pm that day he was on the couch with my husband and he had 3 grand Mal seizures. Jesse was non responsive until the Peyton Volunteer Fire Department arrived. He stayed one night at Penrose St. Francis and transferred the next day to Memorial Children’s for another 3 day stay where he stabilized.
In October 2012, 2 weeks after his dad deployed for a 13 month tour to Africa with no leave time he had an ‘anxiety attack.’ Jesse had a simple partial seizure. Jesse had 82 simple partials and 25 complex partial seizures from October 2012 to December 2013. Jesse would panic, go pale, become disorientated, extremely anxious and vomit, then want a bath, then sleep. Many of these happened during his ABA sessions and I thought it was behavioral. I was so wrong.
We tried 3 different seizure meds, Keppra first. Jesse became extremely paranoid, unfocused and had many accidents in his underwear at home and at school. He has been potty trained since May 2011. This med caused severe regression with his autism and ADHD, total nightmare. Then we tried Depakote, and the shining moment (insert sarcasm) happened in Jesse’s daily journal from his school. His teachers notated that he became extremely defiant (Jesse rarely has behavioral issues) and the final straw was when he randomly started choking his little brother Wyatt. Good bye Depakote.
Jesse’s seizures increased from simple partial to complex partial. June 2012, Jesse started Lamictol, his seizures were under control and overnight he became paranoid. Jesse followed me around 24-7, had extreme mood swings, rages and not sleeping. Done with Lamictol in September 2013.
In August of 2014, I heard about Charlotte’s Web through Jesse’s hippo therapist Abby Whiteside as well as from Paige Figi through the CNN documentary about Charlotte. I contacted Mandy Stanley to inquire about it. I called my husband in Africa and together we began Jesse’s journey with medical cannabis. We had a paper work issue with the registry because they wouldn’t accept our POA. We had to get a medical POA. We did.
Since starting Medical Cannabis, Jesse has had two simple partial seizures at night during the week that school started in January 2014 (anxiety due to change-re: autism), I gave him a rescue does each time and he went back to sleep. Prior to starting Medical Cannabis it would take hours for Jesse to recover even though his seizures lasted less than a minute. No seizures since January 14th, 2014.
Milestones for Jesse: Jesse is about 90% seizure free. Still worry though. Jesse’s autism fog has lifted. Yay! He is more aware of his body and how it functions in the world. Jesse loves to make noise yet dislikes other noise (autism) but now he is okay with ‘other’ noise. His fine and gross motor skills have greatly improved. He is trying to function in life, such as getting dressed, eating, and now prompting his brother like an ABA therapist (LOL) to get moving! Jesse is getting dressed by himself and attempting to groom himself with help, eating on his own and has just started household chores such as washing the dishes and putting his dirty clothes away. He can ride his Kiddo ATV like a pro and we HOPE to teach Jesse how to ride his bike this summer. With Jesse’s motor skills improving it has helped reduce his anxiety a great deal. Anxiety is his biggest trigger, next is hydration, and next is lack of sleep.
Jesse’s best friend is his little brother Wyatt who is diagnosed with Autism and AHD and when Jesse has a seizure Wyatt will close off. Because of Medical Cannabis, my husband and I have noticed a huge leap in their social bond. Amazing what less seizures can do to improve our children’s quality of life including siblings.
Jesse is more independent at home and at school. Jesse is happier, more vocal about expressing his needs and his thoughts, improved pragmatic communication, reduced anxiety like we have never seen before, completely weaned off melatonin, bags under eyes gone, social skills slowly improving and almost SEIZURE FREE!