Community rallies around child

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The rubber bracelets are red, Carlie's favorite color, and the letters that spell "Pray for Carlie" are white. The two colors just seem right for a feisty third-grader.

The bracelets refer to Carlie Rae Warren, who has probably had more needle sticks in her young life than many adults in theirs. Blood work, IVs, MRIs, tests after tests after tests have dominated her last four years. Some of them will be life-long.

The first symptom

It started when Carlie's family made a trip to Liberty to visit her grandfather Gary Warren. Carlie is the daughter of his son, the late Charlie Warren, and Jamie Warren Douglas, and the stepdaughter of Ben Douglas.

Charlie Warren was killed in a car accident when Carlie was 16 days old. Jamie and Charlie also had a son Matt, whom they had adopted after their first child was still born. Since Matt was 15 months at the time of his dad's death, Ben is the father the two have known.

While visiting Mr. Warren, Jamie and Ben slept in the same room with their children. That is when their nightmare began.

"She kept waking us up throughout the night gasping for air," recalled Jamie. "We took her immediately to the pediatrician and he told us Carlie had enlarged tonsils. He felt they caused breathing problems, so we had them taken out."

The surgery, however made little difference in her night-time breathing, so the next step was for sleep apnea. Carlie stopped breathing a frightening 132 times during that night. Doctors had no answer for her apprehensive parents as to why a three-year-old had sleep apnea, or none they knew at that time.

Neither was there a solution to ease their fears since the CPaP masks, the answer for adults with sleep apnea were too large for Carlie. Floundering with no answers encouraged Ben and Jamie to try to make the oversized mask somehow fit the small child. Jamie even tried suggestions anyone offered that might keep Carlie breathing at night, but nothing seemed to help.

Just the beginning

Fast forward to January 2017. Madison County is home for Ben and Jamie, who both graduated from Madisonville High school but at that time Ben worked in Odessa. The family moved with him. Carlie, then 6, began complaining of headaches. At school the nurse dismissed her complaints, believing she only wanted to leave school. Carlie complained so much, especially at night that Jamie took her to the doctor. He too, felt Carlie did not want to go to school.

Then came the intermittent vomiting.

The Douglases already knew the headaches weren't school-related. Headaches, sometimes severe and vomiting, sometimes more frequent than other days, happened on weekends, family trips and spring breaks. Fatigue also haunted Carlie. She often laid down and would fall asleep during family activities, even dinner. Ben and Jamie credited the fatigue to Carlie's sleep apnea. She also complained about her hands and feet feeling numb. Her parents carried her to doctor after doctor. Each one ran tests, drew more blood but gave no answers.

Life in the Douglas household centered around Carlie's nausea and headaches. Since vomiting was frequent and sometimes without much warning, Ben and Jamie put buckets in the truck, sat them throughout the house and put one especially by Carlie's bed. Night time vomiting was another reason the CPaP wouldn't work. Carlie even carries green barf bags with her to school and other times she is away from home.

An answer was on its way; at least the Douglases thought it was the answer. That summer, six months after the symptoms began, an MRI revealed a pituitary tumor called a microadenoma lodged between Carlie's eyes and brain. The good news was it might account for Carlie's headaches, plus 90 percent of microadenomas are benign. The bad news is that they can grow.

"That was Aug. 25," said Jamie, the date etched in her mind. Carlie saw so many doctors, had so much bloodwork drawn and had undergone so many tests Jamie kept a notebook to keep the information straight. She hoped this might signal the end to the need for the notebook.

The pituitary gland is called a master gland, controlling many others including the thyroid. The Douglases learned the tumor on it could cause an unruly thyroid and the reason for Carlie's outbursts. One minute she would be the normal 6-year-old, but the next minute crying, angry and almost uncontrollable. It could also affect growth and Carlie's third-grade friends tower over her.

The average height of a 4-year-old girl is 40 inches. Carlie, age 7, is now 42 inches tall. Each year on their birthdays, Carlie and Matt back up to a special wall where their parents measure how much they have grown since the year before and mark it. Carlie's mark has not moved the last three years. At present, she is predicted to reach the approximate height of 4 feet when fully growth.

"We have stools everywhere," said Jamie. "For her to get in the frig, she pulls out a stool. We have stools and buckets all over the house and with us when we leave. It's something we have to do."

Although the tumor might have caused the headaches, it wouldn't cause vomiting. There was something more. Again, Jamie continued to record doctor visits and tests in her notebook.

Another diagnosis

Carlie's pediatrician sent her an endocrinologist who thought she might have diabetes. After all diabetes runs in the Warren family and nausea and vomiting can be related to diabetes.

To get the answer Carlie had to be hospitalized and taken off her meds. It was a tough couple of days with more bloodwork, more IVs and this time no food. While the test wasn't easy it was highly revealing.

Rather than diabetes Carlie has carnitine disorder. Ironically, newborns are tested for the deficiency since with early detection and treatment, they can often lead healthy lives. Carlie, born in the Crockett Hospital, evidently was not. The hospital, though, has since closed making it difficult to get her needed birth records.

Without early detection and treatment Carnitine Disorder can cause brain damage, weaken the heart, cause liver dysfunction and may even prove fatal. The tests showed Carlie already had mild liver damage. More symptoms of carnitine deficiency are sleep apnea, extreme fatigue, growth retardation and vomiting, all what the child had shown for the last four years.

The treatment is a rigorous regiment of high doses of carnitine, which she must do for the remainder of her life. Carlie now takes meds four times a day and gets bloodwork drawn every two-three months to keeps symptoms at bay.

"The Carnitine disorder causes blood sugar to go crazy and the body eats its muscles for energy since it can't store fats," explained Jamie. "When she starts turning pale and dark circles show up under eyes we know her blood sugar is dropping. Carlie gets four sticks a day to make sure her levels are not too high or too low. If it's too low, she's going to be sick. The last one we do is at 8 p.m.

"The meds have helped with her throwing up, but we've learned to keep a very strict routine to combat it. She eats every two hours and if she eats past 6:30 she's going to be sick all night. Dinner is no later than 5:30 p.m."

One more nightmare

Even with the tumor and carnitine deficiency diagnosis, the headaches, though not as bad continued and the vomiting, though not as frequent still dictated the need for buckets and barf bags. Carlie was sent to a gastroenterologist and then a neurologist in search of an answer.

With severe headaches last month she underwent an EKG for new headache medicine. That was just one appointment for the month. The calendar showed appointments with a neurologist, a pulmonary specialist, a metabolic specialist, another sleep study, another MRI and a 6-hour growth hormone study in which blood is pulled every 30 minutes and injected with hormone to see which one works.

The search, though, stopped last Wednesday.

That day the neurologist sat down with Ben and Jamie and showed them images of Carlie's brain, explaining Carlie Rae Warren had chiari malformation. It could be the root of her other medical issues.

"Her brain tissue has extended into the spinal canal," began Jamie. "It occurred when part of the skull was not fully formed, pressing on her brain and forcing it downward. The brain outside her skull can interfere with the spinal fluid and can cause a build-up in the brain or spinal cord.

"About a month ago Carlie complained of a blurry right eye," she continued. "If you study her you see her left eye is bulging just a little. She needs to see an eye doctor to make sure the tumor is not affecting her vision. First, though she has these tests to undergo. We need to move quickly since without treatment for the chiari malformation it could paralyze her."

Another MRI of her brain and spine will be performed within the next two weeks to determine if the brain has wrapped around the spinal cord. Those numb hands and numb feet? Carlie will undergo an electrical test to determine nerve damage, which the malformation could cause.

But today …

There is no such thing as a normal day. Everywhere Carlie goes, her green barf bag goes with her. Recently she threw up while on the school bus for a field trip and Jamie was called to come get her.

Carlie can have no physical activity since a fall could cause serious damage. Instead of PE, even recess, she goes to the library, where Librarian Amanda Bench has developed a sixth sense about Carlie and her health. Her nausea medicine, dophraine, makes her sleepy, and Pepto Bismol is a constant friend, a bottle kept in the nurse's office, the classroom, in Jamie's purse, in the truck.

Then there is the fatigue and the fact she is so small. it is enough to emotionally affect even the strongest adult and especially a 7-year-old child robbed of a normal childhood of playing with friends and riding her horse. That is the reason for the red rubber bracelets with "Praying for Carlie." stamped on them. They show a little girl that she is well-loved, even by those she does not know.

Bracelets sell for $5 for adults and $3 for children or for any donation. They are presently sold at The Mule Barn, Nettles Country Store and hopefully soon will be in other businesses around town.

And if you'd like a real treat, call the Douglas family at (936) 402-2011. Seven-year-old Carlie Rae Warren will personally deliver your bracelets to you.

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