MAEGAN HAGANEY | FACES OF EPILEPSY
Maegan Haganey is 14 years old and is going into 9th grade at her local high school in her hometown of Inverness, FL. She attends public school with her mom that volunteers as her paraprofessional in her high functioning ESE classroom, using a special curriculum called Access Points.
At the end of 7th grade the decision to switch from regular curriculum classes to Access Points Curriculum was made. Access Points is geared for kids with cognitive issues and other special needs.
Maegan lives at home with her Mom April, Dad James, 17 year old sister Nicole, and her fur dog family: Sox, Jake, Bella, and Tank. She loves to do gymnastics, rainbow loom rubber band crafts, duct tape crafts, puzzles, search-a-words, sing with her youth choir at church, and loves to eat! Most days the exertion from these activities will make her extremely sore, exhausted and take her out of commission for several days.
Our seizure journey started at 13 months old from the GI bug virus, C-Diff, & fever. 15 months old from a cold sore. For a while, seizures were controlled with medication, but breakthrough seizures usually always occurred with illness. Age 7-8 seizure-free for 2 years, but sick every month. Age 9 diagnosed with Rare PCDH19 clustering Epilepsy. This epilepsy is drug-resistant and can be life-threatening!
We have noticed that her seizures are triggered by a virus, bacteria, allergies, and allergic reactions. Her body is so sensitive and reacts negatively to so many things! We really never know when seizures are going to strike, but she does have some patterns that put us on alert!
Majority of seizures do happen when sleeping. They usually occur between midnight to 7 am, but surprises are thrown at us and they have happened later in the morning / afternoon, after our day has started.
Maegan has Grand mal seizures, AKA tonic/clonic seizures. During a seizure her heart rate jumps up to 220 beats per minute, oxygen drops, she stops breathing turning purple and blue, her body is stiff and shakes violently.
We make sure she is on her side during the seizure so she doesn’t aspirate on her saliva. After a seizure she usually is unconscious. When she awakes we try to get medicine in her system. This is extremely difficult and the fight usually begins.
The problem is she is confused and sometimes unable to swallow properly. Once seizures have started we watch and wait observing her every move! We start a detailed log on all seizure activity putting down the date & time they occurred, what type of seizure, what they looked like, what meds we gave, etc. This just helps so we can recall the details later to show her doctor at the next appointment.
Our goal is to keep Maegan safe, stop the clusters of seizures, and try to prevent her from going into Status Epilepticus from home, but I promise you it isn’t easy!
Our reality with every seizure is she can have a heart attack, a stroke, and even die of Sudden Unexplained Epilepsy Death. No matter how many seizure-free days, the brain and body goes back to amnesia like state, relearning things all over again.
Maegan was always above average cognitively with an IQ of 127, everything came easily and she was always independent.
Unfortunately in 2016 we started to see the devastation of what repeated seizures, drug resistance and removal of a long term medication does to the brain and central nervous system. Cognitive decline, memory loss, Alzheimer/ dementia symptoms, exhaustion, no interest in things, became dependent relying on us to help her with everything, withdrawn, aggressive behavior and a totally different person.
The simple tasks of life are extremely hard for her, and she has to be supervised, prompted, and with someone at all times.
Our family works hard to educate others on epilepsy. We advocate for our daughter and other children with epilepsy! We believe knowledge is powerful, so we put a lot of time in research to find more natural options for better treatments and for quality of life for our daughter and for others suffering with this horrible disease!
Our biggest goal is to try to break the stigmas and ignorances that are associated with epilepsy and to get people talking about uncomfortable medical topics that are needed to have more compassion and understanding!
Many plans are shifted around or canceled due to the unexpected and unpredictable nature of seizures! We have made up our mind that we refuse to be paralyzed in fear to live life! Contingency plans are key and a must to make life happen!
We truly feel you have to step out of the box, be open-minded, look for the positive, and be ready to try anything to help your child. Knowledge is powerful! Agreeing to disagree respectfully is crucial, and to give grace for those that say offensive and hurtful comments is a must.
We believe this journey is for a reason! We trust and thank our Heavenly Father Jesus for the strength and peace that he provides us.
We are so grateful for his help to get us through the good and the bad days!
Our journey is one moment at a time and we hope that we can be a light in the darkness.
We hope to encourage others that they can do anything with Jesus and with the support of good positive people by your side and wonderful organizations like Epilepsy Alliance Florida and amazing support groups.
We have tried several antiepileptic medications that haven’t helped. Currently we are trying CBD Hemp seed oil with 3 Terpines for Maegan’s meds during the day. The past 6 months we have gotten 27, 22, 36, 21, 38 & 40 days seizure-free, we were at 7-10 days, so progress.
We are trying different lndica strains of Medical Marijuana at night. We hope to stop seizure breakthroughs and replace her rectal and oral Valium. Time will tell, and a work in progress. We have found you have to be patient when trying Hemp Seed CBD and Medical Marijuana, it’s not a quick fix! There are several strains to try, so when one strain doesn’t work, try a different strain. Everyone will react differently just like if you take regular synthetic pharmaceuticals!
We are encouraged and excited about the results we are seeing. We are grateful for Damion & Tonya Grob & David Forgang at Healthy Hempies for stepping out of the box to help our daughter!
“There have been as many as 80 different Cannabinoids discovered in the Cannabis plant. Each offers its own variety of benefits and effects that need to be recognized by the medical community as opposed to the current test on just the differing combinations of these Cannabinoids could help manage endless amounts of adult geriatric and pediatric conditions with little to no side effects as a natural alternative to many common conditions. ”