Della Henson’s Story
This story is about my 16 year old special needs son.
Devin was born full term 8lbs 4 ozs. He had afixia at birth and was born dead. His algae scores were 0-1-5. His lungs collapsed, swollen his bowel, and lost all natural reflexes.
He was transferred to a children’s hospital. On the way to the children’s hospital, they thought he was having seizures. They started him on phenobarbital. The doctors asked us to shut off the machines. We refused and he was not having any signs of seizures so they discontinued the phenobarbital and he woke up.
He was diagnosed with quadriplegic dystonia dyskensia cerebral palsy. When he was 2, I took him to the doctors bc I could tell something was not right with him. The doctor looked him over and said he was fine. The doctors office was about 30 miles from our home. On the way home his arm started shaking and it moved to his other arm. I called his doctor and said I think he is having a seizure bc he is uncontrolled shaking. The nurse talked to the doctor and said bring him back. I wasn’t really sure what was going on, I have never seen this b4, do I turned around and headed back. When we got back to the hospital he had stopped breathing and they rushed him in the E.R. and had to tube him.
The doctor apologized and they transferred him to a bigger hospital. Over the next 3 years no meds seemed to control his seizures. We transferred his care to another children’s hospital. When he was 5, his seizures were out of control. He was having seizure on a daily bases and most were longer than 5 minutes and we gave him recital diastat and got to know the staff at our local E.R. personally; we were there at least 3 times a week.
His new neurologist did a video EEG and diagnosed him with refractory seizures. He had hundreds daily and entered status epilepticus at night (eses). Over the next 10 years we tried several different meds and combination of meds until we found a combo that worked for Devin. He is now on Keppra, klonopin, and depakote. His seizures are now sparks and we are not sure about the eses. I know he still has break through seizures. They are fast but hard on him. We have not had to use his rectal diastat for 2 1/2 years and the last hour long video EEG did not show any! We are changing his klonopin to onfi, because onfi helps with his movements, but I won’t stop the meds bc it’s working for my son. It’s the hardest thing I have ever done, watching my son have seizures. I love him so much and I pray every day for a cure for my son and everyone who is affected by epilepsy.
– Della Henson