Jocelyn is 25 now and a beautiful young lady. It’s truly amazing how far she has come despite suffering from AHC her entire life. The day after Jocelyn was born, she had her first AHC attack. Doctors did not know it was AHC, so it was misdiagnosed as epilepsy – for three years. 911 calls, hospitalizations, multitude of drugs – nothing would stop the AHC attacks. At age three, she was officially diagnosed with AHC by Dr. Kenneth Silver. This began a new course of treatment. Over the years, she has had the “typical” AHC triggers- water, sun/lighting, heat/cold/wind, loud noises, etc. Any type of excitement – good or bad – can bring on attacks.
In the teenage years, Jocelyn experienced 3 seizures, all due to new medications to help with AHC symptoms or anxiety. These were devastating to watch her have, but they did not reoccur after weaning off the medications. Fast forward to October 2020. She had a focal to generalized tonic-clonic seizure that would not stop without rescue medication. That put us on high alert for months. Life got back to “just” living with daily AHC challenges of continued quad, hemiplegic, and dystonic attacks. Then in March 2021, Jocelyn had another focal to tonic-clonic seizure. This started a year of monthly to bimonthly status epilepticus, that meant more calls to 911, rescue medications, ER visits, starting AED’s, inpatient hospital stay, and then medical Ketogenic therapy. The last seizure she had was February 2022. Ketogenic therapy has been so successful, we have tapered down and off several medications.
Anxiety and OCD are her biggest triggers of dystonia and AHC attacks. Learning new approaches to work through anxious or OCD thoughts have given her stronger days. She continues to ask us and family/friends to pray with and for her. When she hears about a new child diagnosed, she wants to know “what kind of AHC do they have” and “are they having a strong day?” We pray for Jocelyn and her AHC friends. Through it all, she finds joy in the little things and keeps fighting.
With love, J., Heather, and Jocelyn
