Saving the Children

Unless SLO County’s pediatric sub-specialty clinic finds a new home to aid area children, it will have to close

BY ANNE QUINN

San Luis Obispo County doesn’t have many big city problems, but it lacks urban advantages, too, and for hundreds of county children suffering from serious diseases, this can be life threatening.

For 40 years, a group of dedicated pediatric specialists in Cardiology, Pulmonology, Gastroenterology, Orthopedics and Endocrinology have traveled to SLO County from as far away as Stanford University in Palo Alto and the Children’s Hospital in Los Angeles.

Like missionaries in a remote outpost of a third-world country, these doctors see hundreds of San Luis Obispo County children for two days in seven pediatric sub-specialty clinics, held six times a year. The clinics were established in a cooperative effort between local pediatricians, SLO County Public Health and California Children’s Services. Now, they may have to close.

The facility they use in the Pacific Medical Plaza next to French Hospital has been rented to Mission Medical Associates. These pediatric clinics have been allowed to continue until November 1 when Mission Medical expects to move other doctors to the offices, according to Lori Shields, Director of Administrative Services for Mission Medical.

Dr. Greg Thomas, director of SLO County Public Health, said that the California Children’s Services has just secured two small medical units in the North County for the pediatric orthopedic clinics, which need only one room. Now a committee of County Public Health officials, pediatricians and the California Children’s Services is talking to both French and General hospitals about finding facilities for the rest of the clinics.

Unlike the orthopedic care clinics, the endocrinology clinic needs four rooms to serve the 300 SLO County children with thyroid problems and childhood diabetes. They need separate rooms for check-in, drawing blood, and consulting rooms for the specialist, and nutritionist.

Francine Kaufman, MD., the Head of Endocrinology and Metabolism and director of the Comprehensive Childhood Diabetes Center at Children’s Hospital in Los Angeles, said her group departs form Los Angeles at dawn, car pooling in a huge van packed with charts, blood bags, and machinery.

They begin work in San Luis Obispo at 11 a.m. and continue working until the lines of needy parents and children finally diminish by late evening. Rarely sitting down, grabbing only quick sandwiches while working, these specialists assess the condition of a child every 15 minutes.

Then they catch a few hours sleep in hotel rooms donated by a group called the Children’s Diabetes Network. Then they get up and work all the next day.

"These are the specialists that write the text books and do the research. They are the most respected medical experts, people well known all over the world," said pediatrician Kathleen Long, MD., who helped establish the pulmonary and gastroentrology pediatric clinics in 1976.

The Children’s Diabetes Network, a group of over 200 parents who’s children have diabetes, is so grateful that the specialists travel here to treat their children that they pool their money to provide lunches and hotel rooms.

"You should see those parents and children line up all day to see these doctors," said Dan Price, a member of the Children’s Diabetes Network. "This is a county problem that is not being addressed."

Price, a South County homebuilder, said he could afford to take his15-year-old son, Tommy, to other places for treatment "but a lot of people in this community can’t do that. People here don’t understand why this is so important. They say to me ‘There are so many doctors here, why do you need to bring in more from LA?’"

The reason that many local children with chronic diseases need specialists from out of the area is because doctors in specialty medicine won’t move to SLO County.

Explains Kaufman: "Those of us who pursue esoteric or cognitive specialties such as pediatric endocrinology need to be at academic hospitals so we can continue to do research and teach as well as do patient care," said Kaufman.

Price appealed to San Luis Obispo County Supervisor K. H. "Katcho" Achadjian for help in keeping the clinic open.

Achadjian tried to relocate all the clinics to General Hospital, he said, but wasn’t able to.

One problem was General’s elevator, which Achadjian said isn’t safe enough for large numbers of children, anyway, and leads to an in-patient area. A state-licensing requirement prohibits outpatients to walk through an in-patient area.

"We would only have to travel five feet through the in-patient area but that might as well be five miles," Price said.

Price has also appealed to State Senator Jack O’Connell, who suggested that the group apply for tobacco tax funded money through Prop. 10, or coordinate their effort through the Economic Opportunity Commission.

But so far, there has been no solution.

"Local pediatricians and nurses can’t stay on top of everything," said Morgan Meadows-Paige, director of the Children’s Diabetes Network. "Many are very behind in childhood diabetes. They don’t even have the newest meters for checking glucose. They recommend things that are very inappropriate for children. Oftentimes diabetes is diagnosed late, and thought to be something else. If not treated property, a child could die."

The specialists who travel here help with that, too. Long said that the visiting doctors often lecture to the local medical community for free.

The onset of childhood, or Type I, diabetes is sudden, unannounced, and terrifying. A child who has diabetes can live a healthy life only if their blood sugar levels are constantly monitored and adjusted. Parents have to assume responsibility for what the pancreas does in a normal person to keep their children alive.

Most parents are completely unprepared for this. At French’s pediatric unit parents are given a "survival kit," a series of brochures when they take their child home. After that, it’s up to them.

"My husband, Tom, and I received strong support and education from a great team of diabetes specialists at the Children’s Diabetes Foundation at Denver," writes Chris Baker, founder of the Children’s Diabetes Network in her brief history of the group. "When we moved back to Los Osos, we couldn’t believe there was no support group, no American Diabetes Association chapter, no team of diabetes specialists, not even information about the whereabouts of another family who had a child with diabetes."

Every parent of a child with diabetes remembers the exact date that his or her child was diagnosed. They need the advice of the best medical experts, and of each other, because the care of a diabetic child falls squarely on their shoulders.

The peak age for Type I diabetes is 13. It is not brought on by poor diet, lack of exercise, or smoking, as is its counterpart, Type II Diabetes, which traditionally impacts adults. People who know nothing about this type of diabetes mistake it for an eating disorder (Kaufman said that Type II in children is increasing, due to childhood obesity. "It’s epidemic," she said).

Type I, or childhood diabetes, occurs because the pancreas, the organ which produces a vital protein called insulin, stops functioning. Insulin supports life by moving glucose, a sugar produced in the stomach by food, into the cells.

"Insulin and glucose work together so the cells can make energy from food," explains a pamphlet given out by the Pediatrics Unit at French Hospital. "Basically, you have to become your child’s pancreas," explains Joy Smith, who’s daughter Morgan was diagnosed on April 25, 1998.

"Parents feel so overwhelmed. There are no resources here," said Meadows-Paige.

Her initiation began when she wondered why her daughter, Willow, didn’t seem to be growing as rapidly as her twin brother Liam. Shortly after she had a rash, Willow started to act differently.

"Willow was always a happy child. All children are happy, but Willow was different. She was radiant. If she fell, she would just laugh."

At 19 months soon after a rash cleared up, Willow changed, her mother said. "If she fell, she would get really angry, become very irritated at herself and cry."

Meadows-Paige, who had her hands full with an infant daughter, as well as Willow and two sons, wasn’t sure what to do. But her unconscious was trying to tell her. She said she began to have vivid dreams that she was searching for Willow in the woods and couldn’t find her. "I would wake up crying," she said.

"Then I had a dream where I found her. Willow was standing beside a clear, calm lake. I woke up and instantly. I knew. My brother had diabetes. Willow was exhibiting all the classic symptoms, such as excessive thirst. I had her blood sugar tested. Hers was 300. A normal blood sugar level would have been 120."

Often it’s hard to distinguish the symptoms of Type I Diabetes from the normal changes a child goes through, especially at puberty, when it most commonly shows up. Symptoms include sudden weight loss, extreme thirst, a constant need to urinate, irritability, and crying.

Smith’s daughter Morgan got teased at a slumber party for having to go to the bathroom so often. She began to notice Morgan couldn’t go to a soccer practice without having to run to the bathroom first. She seemed to be losing weight, but she was changing so much anyway.

Smith wrote all her impressions in a letter to their pediatrician, who called and insisted Morgan come in for tests.

The day Morgan was tested, the Smith’s had dinner with friends. They got home, she said, and her answering machine had four messages on it from the doctor. Morgan, he said, was terribly sick.

Most parents whose child is diagnosed don’t realize at first that their lives will change drastically.

Morgan-Paige recalls a woman whose child was just diagnosed talking at a meeting of the Children’s Diabetes Network. "She thought she could learn to give her daughter insulin shots over the weekend, then show her child care provider how to do it and go back to work on Monday.

"After she said this, she got up to go to the bathroom and we all just looked at each other. ‘Should we tell her?’ we asked each other. When she came back to the table we said, ‘Look, we need to give you a reality check. You’re life will really change.’"

Since each child’s inability to process insulin or food is different, their blood sugar levels must be checked six times a day. Parents have to wake up their children at night to check the levels. Insulin must be administered to make sure the cells can absorb the blood sugar produced by food. Symptoms occur when the child’s blood sugar is too high and different symptoms occur when it’s too low.

"If it was just one way or the other, you could figure it out, but its not," said Smith. "You have to find a balance."

The terror many parents experience grows when the child leaves for school.

"Any risk to my daughter is unacceptable to me," says Marianne McKeon, whose daughter, Maura, goes to Teach Elementary School in San Luis. "I want her to have complete access to testing and food right at her desk. If they [the school] want to have a buddy walk her to the office so she can check her blood, that is not acceptable to me. What’s the buddy going to do if my daughter passes out on her way to the office?"

Smith, who volunteered full-time at Morgan’s school just to be by her until she went to high school now, writes detailed letters to teachers to make sure they understand diabetes.

"Most of the teachers were great about it. But one year a teacher at San Luis High told her that if she wanted to eat at her desk she had to have it outside in the hall."

Morgan, now 16, is still active in sports. She said some people who have diabetes hide the fact, but that’s not her style.

"I’m very open about it. My friends all know. They like to watch me while I check my blood," she said.

She wears an insulin pump, a small device the size of a beeper, which constantly delivers minute amounts of insulin. It’s made her life so much easier, she says–no more needles and self-administered shots. It’s one of the advances that experts in endocrinology bring.That’s why the Children’s Diabetes Network wants to keep bringing experts here. A $6,000 grant it recently received will be used help fund the pediatric endocrinology/metabolism clinic staffed by Kaufman, Meadows-Paige said. Members vow to find the money to keep the clinic open.

They are determined people who know that children's lives are at stake. Æ

Anne Quinn has a sweet tooth and a mean mind.