» Seizures

Seizing the opportunity to understand the condition

A seizure will shock parents but the first rule is ‘don’t panic’.

As the CdLS Foundation grows, the doctors at the heart of the Foundation are sharing knowledge of more elements that make up this condition. One area of growing awareness is that of seizures. In Scotland, Mary Fox, realised that her daughter Lizzie, was suffering from seizures and a call to the Foundation showed that she was not alone. Doctors in Glasgow were able to talk to Laird Jackson in the USA to understand the problems. Many more parents are reporting incidents of seizures. In these two articles we look at a parent’s experience and hear from a doctor who explains about seizures and what to do.

Michaela Farej, is a happy and healthy 4 year-old CdLS girl living with her mum, Maria Lopez, in Illinois, USA. However, one morning, when she was just a ten-month-old baby, Michaela gave her mother quite a scare.

Maria remembers having a bad feeling that day — her daughter just seemed “off.”

Earlier in the month, Maria had taken the baby to the doctor several times for circumoral cyanosis (a bluish skin tint around the mouth, typically from a lack of oxygen), and had just put the phone down from her doctor having insisted he see her daughter that day.

It was then Maria noticed that Michaela had gone limp and her face had turned blue. Maria propped Michaela upright and called her name, but Michaela’s chest was not moving. Maria responded, first, by checking to make sure her daughter’s airway was not blocked, and, then, by performing mouth-to-mouth resuscitation.

Panicked, Maria called her mother, Connie, who directed her to call the emergency services. While waiting, she continued rescue breathing and suctioned the mucus from her daughter’s airway.

Despite having a medical background herself and a familiarity with epilepsy, Maria never realised what was actually happening — Michaela was having a seizure.

Since that first episode, Michaela has been diagnosed with epilepsy, specifically Mixed Seizure Disorder. Every four to six weeks, she may have one 30 to 90 second seizure.

Many of us may have seen an actor on television, perhaps in a medical drama, quite realistically portray a seizure. But nothing can prepare us for witnessing a loved one going through such an episode.

A parent’s response involves many emotional elements, mostly fear and overwhelming concern.

The first time Connie saw her granddaughter fall into a seizure, her initial thought was Michaela might die. As time passed, both Connie and her daughter began to feel more comfortable helping Michaela through her seizures, but their fears and concerns remained.

Medical professionals would often respond to their emotional reaction by telling them to “calm down and not worry so much.” In those instances, they wish the doctors had been more sensitive to and respectful of their maternal instincts.

Maria and Connie take time to educate other family members about what to expect and how they can be helpful when someone is having a seizure.

A couple of helpful tips are to keep time of the seizures with a second hand watch and maintain a journal of the date, time, duration and signs of the seizures. This information has proved invaluable to Michaela’s doctors.

When speaking with doctors in an A&E situation, Maria insists: “Speak loudly and clearly, repeating yourself if necessary. Expect the doctors to be less than interested in what your instincts tell you but do demand they at least acknowledge that they heard you.”

Maria tells other parents to think they are speaking for their child. “I have often reminded parents, ‘If you do not speak up for your children, who will?’ Never be afraid to ask questions about testing, procedures, and medications.”

Although Maria never hesitated to question the various doctors she had encountered, she feels it would have been helpful to have someone there to tell her it was “okay and you are not a horrible person for doing it.”

As many other parents have reported, it can be difficult to find the correct dosage or combination of medications to treat the seizures. It was not any different for Michaela.

After repeated hospital admissions, and Maria’s repeated questioning of side effects and new drug trials, Michaela’s seizures are effectively under control. In addition to medication, Maria stresses a very strict sleep schedule is imperative for her daughter, as variations have led to seizures.

“While everyone’s experiences with seizures is different,” Maria poignantly concluded, “I wished other parents would have told me, when Michaela was sick from the medications and bruised by the I.V.s, that it was okay for me to be scared, tired and angry.”
 
Reaching Out newsletter
July 2000