By April Webster

Tribune Staff

Any mother understands what it’s like to be responsible for their child’s safety, but imagine what it would be like if your child could stop breathing at any moment whether you’re right beside them or across the room.

Will Orr and Maree Orr, parents of 4-year-old Ayden, go through this every minute of every day. Ayden has been diagnosed with a unique form of epilepsy. Seconds before going into an epileptic seizure Ayden stops breathing and CPR has to be administered. As soon as the CPR takes effect and he starts breathing, Ayden goes into a full-blown seizure.

Ayden’s most recent seizure was Dec. 6, 2016, and it took his mother three minutes of CPR to revive him. Following this episode Ayden has experienced many changes that can’t be medically explained. One inexplicable is that before the most recent seizure he was left-handed but now is right-handed. Multiple doctors, specialist and hospitals have reviewed his case and performed numerous tests only to determine a case like Ayden’s is unknown.

“Ayden has had four episodes over a span of two years,” Maree said. “The first time he was eating and we thought he was choking. I had my finger in his mouth to see if there was food in there and he went into his seizure and locked his jaw. There was blood everywhere and the paramedics thought he had bit his tongue, but it was actually my finger. As with most children, after he has a seizure he doesn’t recall the time lapse and he is unaware of his surroundings. Normally, children will bounce back pretty quickly, but with Ayden, he doesn’t know who we are. He won’t let me hold him. The longest it took his memory to come back was 52 minutes.”

The Orrs have four children, Ashley, Baylee and Cameron, ages 18, 16, 8, respectively, and Ayden is 4. His second seizure was while his 16-year-old sister, Baylee, was watching him while his mother was doing laundry. “Ayden was playing and running around,” Maree said. “We have a sectional couch and Baylee saw his feet and thought he was looking under the couch. A minute or so went by and when she turned him around he had already turned blue. She picked him up and ran screaming.”

Ayden’s father was coming in the door from work as Maree put the child on the floor and started doing CPR. “As soon as he starts breathing he locks his jaw and goes into a tonic-clonic seizure with full-blown convulsions, foaming at the mouth and everything,” Maree exclaimed.

Doctors had put Ayden on seizure medicine for a year and kept a loop recorder, which is an electro cardio graphic monitoring device, attached to him to monitor his vital signs. “They weren’t sure if it was a heart-related thing,” Maree said. “They had removed the loop recorder after seven months. They took him off the topiramate and he went almost a year and a half with nothing (happening).

During that period doctors did two EEGs to see if they could detect a seizure. During that time Ayden experienced no seizures.

“We were still very sensitive about leaving him alone,” Maree said. Dec. 6, 2016, Ayden was feeling clingy. “That day he just wanted me to hold him,” Maree said. “He’s a very affectionate child anyway. I laid him down on the couch because I had to go to the bathroom. When I walked out he followed me. He wasn’t crying or anything, he just said ‘hold me.’ When I picked him up his legs were straight and I was just walking around with him.

Carrying the somewhat stiff child around made Maree feel uncomfortable. “Mommy’s just going to lay you down in my bed while I use the bathroom and come straight back,” she said. “He normally doesn’t tell you when he’s not feeling well, so when he does you really pay attention. I laid him on his side in my room and when I came back, it was about three minutes, when I walked in he was still in the same position. I thought he had fallen asleep. I walked up to him and said ‘Ayden,’ then I switched the light on and he was already blue. I called 911 and picked him up. I was screaming ‘please God don’t take him now’. That was the first time I was here by myself. I was trying to bring him into the living room floor to start CPR. I did the rescue breaths and was rubbing his chest.”

It took three minutes to revive him before Ayden’s jaw locked and he went into a seizure. “The police showed up thinking it was an abusive situation because I was screaming in the background” through the phone, Maree said. “When the police came in he saw Ayden was just coming out of his seizure, so he called an ambulance. His oxygen was 85 or 89 and so they took him to Vanderbilt and that’s when they diagnosed him on Dec. 6 with epilepsy. He’s had four seizures, but this would be the third time he’s stopped breathing and went into a seizure.”

“He has a platelet thing happening,” Maree said. “His platelets keep dropping. Anything below 50 you have to treat it carefully. He could bleed out, or if he hits his head he could get a blood clot in his brain.

Maree contacted the Epilepsy Foundation to tell them about Ayden’s condition. “They said they’ve never heard of a case like Ayden’s, and they referred me to the Rare Epilepsy Foundation,” Maree said. “They’ve never heard of a case like his.”

It is common for a child with epilepsy who has a seizure for their breathing to slow. In many cases the parent only has to stimulate the child and they come out of the seizure. “The Rare Epilepsy Foundation reached out to three neurologists in the U.S.,” Maree said “One was at U.C.L.A., one was from Maryland and one was from Le Bonheur Children’s Hospital in Memphis.” The doctor at Le Bonheur told the Orrs to contact her.

They made the trip to Memphis and stayed eight days. “During the eight days he was coming off the medicine Vanderbilt put him on so after the first few days nothing happened and then the medicine exited his system and his spikes just went crazy,” Maree said. “The nurses made sure they had bags of oxygen, etc. The nurses were seeing on the EEG it was going crazy. One night they knew for sure he would have seizures that night, but when he went to sleep his brain levels were normal. They said normally kids have seizures during the night, not during the day.

After the seizure Ayden changed. “He was doing everything opposite,” Maree said. “He was left-handed, but after his Dec. 6th seizure he is now right-handed. They cannot tell us why. They did an MRI MRA and probe with dye to see what shows up in his brain. All of it came back normal and they don’t know why. They see it may be generalized to his temple. He does have epilepsy, but they can’t name it. They have sent off DNA markers to show if it’s something already related to epilepsy. The doctors said to not be surprised if he has an unknown case.”

At present, the Orrs are waiting on more of Ayden’s cardiac and neurological test results, which may take as long as eight weeks to finalize. Their church purchased a wrist monitor, cameras and a special epilepsy bed to help monitor his wellbeing. The wrist monitor waits 30 seconds before alerting the parent to an oncoming seizure. Recently, Maree was at Wal-Mart with Ayden standing next to her and the alert went off. “He was just standing there, but wasn’t alert,” Maree recalled. “He was already starting to go into it.”

To better keep track of Ayden’s epilepsy and the dangerous precursors, one of his doctors, Hannah Renno, MD, prescribed a service dog to help keep the 4-year-old safe around the clock.

Dogs trained for this specialized work don’t come without cost. One trained to detect Ayden’s seizures has a price tag of $30,000. “A dog can detect a seizure five minutes before it happens,” Maree said. “The service dog will be with him at all times, even during showers. He can smell that there is a change coming. The dog will check on him 50 to 80 times per night. If his breathing changes the dog will stimulate him. It will smell his breath, put his head on his chest and check the rhythm of his heart. If the dog feels there is a threat he will come and lick my hand to alert me.

“The dog also will bring comfort during memory loss after a seizure. It lays on him during a seizure to stimulate him. It brings the brain back to focus. The dog also will roll the child on their side to keep them from suffocating on their tongue. Kids that have short-term memory loss due to a seizure will allow the dog to lay on them. Ayden won’t let anyone touch him after he has had a seizure. The dog will tell if something is hurting him.”

“The dog will be our lifeline at night where we can get to him and see how he is,” Maree said. “The dog will go everywhere with him.” These dogs go through 5,000 hours of training to detect epileptic seizures. After first meeting Ayden, the dog and the family will get an additional two to four months of training. The dog “will know 70 commands and I have to learn them all,” Maree concluded.

Unfortunately, the Orr’s health insurance will not cover the cost of a service dog. To raise money to pay for the specially trained dog, the Orrs have set up a GoFundMe page. You can learn more about this benefit by checking out their Facebook page, “A Service Dog for Ayden.”