Couple copes with little girl’s seizures
Imagine being a new parent, watching your darling baby playing happily, when suddenly she hits her head ever so lightly, goes limp and passes out with her eyes rolled back in her head, turning white and then blue.
What would you do?
“I totally freaked and then my husband Don started giving her mouth-to-mouth,” said Jamie Johnson, 28, of her husband and daughter Andi, then 11 months. “She was blue and stiff. We thought she was dead.”
At the time, the Johnsons had one other child, Jake, who was just 2 years old, but they’d never experienced anything like this with him. Don, 43, had used CPR when he was a teen-age lifeguard, and the technique came back to him immediately as he was working on his daughter.
“She had hit her head before going down and at first I thought she might be choking on her tongue,” he said. “So I cleared her mouth and started CPR.”
Jamie called 911 and after the paramedics got to the Johnson’s Minden home and treated Andi, she regained consciousness and started vomiting.
“What is happening?” the Johnsons wondered. “What is wrong with our baby?”
– A diagnosis. The answer would come from a Reno pediatric neurologist, Dr. Gerardo Rodriguez, who pegged Andi’s condition as pallid syncope, sometimes called “breath-holding syndrome.”
Rodriguez entered the picture after Andi had repeatedly been sent to emergency rooms in Minden and to Carson-Tahoe Hospital in Carson City.
Pallid syncope is a condition that occurs in up to 5 percent of children between the ages of 16 months and 6 years. It is a “sudden loss of consciousness and postural tone resulting from an abrupt, transient and diffuse cerebral malfunction due to a sudden reduction in delivery of oxygen to the brain.”
Often misdiagnosed as epilepsy, pallid syncope manifests itself involuntarily after an unexpected stimuli (pain, fear, fright or even a pleasant surprise), from something so simple as a light bump on the head. The patient turns pale (pallid), the heart slows down, the eyes roll back in the head and the person loses consciousness.
During a seizure, the body can stiffen, the back arches, and there may be some leg or arm jerking. Following the attack, the child usually falls asleep for a long time.
Sound awful? The good news about pallid syncope, it turns out, is that a child outgrows it by around 6 years old – 50 percent by age 4.
The bad news is, there aren’t any foolproof ways to stop the syncopes, or fainting seizures, before then.
– What causes it? In as many as 25 percent of the children with pallid syncope, there is a family history.
Jamie, one of five children, does remember fainting incidents when she was growing up in Indiana. In fact, Andi’s pallid syncope stimulated many memories of similar incidents with not only Jamie but her sisters.
“I’m still friends with the babysitters I had while growing up, and they remember me holding my breath and passing out up to age 2,” Jamie said. “I know my older sister Kim had it and my younger sister, JJ, also faints right in the middle of a sentence.”
Jamie’s mother is epileptic, she said.
Don, the advertising manager for The Record-Courier, is the youngest of eight children and grew up in New York state. He doesn’t recall anyone in the Johnson family having anything that could have portended Andi’s condition.
“One time I did faint, though, in 5th grade when I had to sing a solo in a school Christmas pageant,” Don said. “I remember feeling like I was going to faint, so I went backstage and fainted. It was a one-time thing, though.”
With 20/20 hindsight, Jamie and Don can look back on Andi’s infancy and remember observing what they now call mini-seizures.
“She would just stand there and stare,” Jamie said. “And sometimes she would shake a little, especially when she got real mad. We didn’t check it out at the time, because we had no idea it was anything unusual. Now I realize it was probably the beginning.”
– Living with it. Treatments with atropine, Valium and other drugs are available to patients of pallid syncope, and have been used by the Johnsons. But Jamie has noticed patterns in Andi’s seizures and made changes in her daughter’s schedule to try and quell the syncope events without drugs.
“We noticed it usually happens around 4 to 5 p.m., when Andi is tired and hungry – ready for dinner and bed,” Jamie said. “So, what we do now is feed her a snack at that time and make sure she gets plenty of sleep. She’s a great napper – she’ll go down very easily.”
Physicians tell parents of pallid syncope children not to reinforce the seizure spells by giving in to the child’s wishes, and excessive and/or unnecessary discipline is also something to be avoided.
It is important for parents to remember that the long-term prognosis is excellent for these children, and that it is an involuntary reaction to stimulus – it’s not the child’s will against the parents. But all that is hard to take to heart when your child is laying on the floor, blue and stiff.
“At that time it still looks like she is dead,” Jamie said. “It’s so hard to watch.”
– Hard to get sitters. Trying to raise three children under the age of 3 – the Johnsons added Kory to their family Oct. 28 – is challenging enough, but with Andi’s condition, getting a babysitter is an extra obstacle.
“One time Jamie went to sign up at a local fitness center that offers babysitting, and when she told them about Andi, they said she couldn’t come there because blowing in her face if she has a seizure was child abuse,” Don said.
Blowing in Andi’s face while she is seizing is a technique that helps to stimulate her to take in air and breathe, Don said. To inform potential babysitters about what to do if Andi does go into syncope, the Johnsons prepared a handout, but say they still have a hard time getting a sitter.
Andi, with a round, cherubic face and silky brown hair that frames it, has had at least three severe syncope incidents. The worst seizure happened one night when Jake and Andi were playing before dinner, running around the couch. Jamie was right there, peeling potatoes for dinner and watching her children.
“They ‘bonked’ heads, as Jake calls it, and she went down with her longest seizure ever – around two hours.” Jamie said.
After calling 911, the family ended up at a nearby medical center. For two hours, the parents talked to her.
“They said she couldn’t hear me, but I know she could,” Don said. “I just kept talking to her the whole time.”
“Don can actually bring her out of starting a seizure,” Jamie said. “When he sees her start going in, he just holds her and talks to her and she’ll stop.”
“When she starts to do that cry without a sound, I know she’s holding her breath,” Don said. “I just pick her up, hold her and talk to her, and usually she’ll start crying real loud and I know it’s OK because she’s breathing. She’s Daddy’s little girl.”