Posted 4:03 pm Sunday, February 14, 2010
Group Hopes To Fight Type 1 Diabetes
By COSHANDRA DILLARD
Staff Writer
Local parents who face the challenges of managing their child's Type 1 diabetes have formed a foundation with the goal of creating awareness and offering support to families. The Tyler Type 1 Diabetes Foundation has established a support group and is visible through a social network.
Staff Writer
Local parents who face the challenges of managing their child's Type 1 diabetes have formed a foundation with the goal of creating awareness and offering support to families. The Tyler Type 1 Diabetes Foundation has established a support group and is visible through a social network.
The group partners with Trinity Mother Frances Hospitals and Clinics since it has the area's only pediatric endocrinologist, Dr. Luis Casas, who has been with the hospital since 2006.
Before he arrived, most families traveled to Dallas or Shreveport for care. Dr. Casa said nationally, there is a shortage of pediatric endocrinologists. He said Tyler has received some patients from Shreveport, since the city lost one of its three pediatric endocrinologists.
Dr. Casas said he treats more than 200 East Texas children with Type 1 diabetes.
OUT OF THE SHADOWS
As America's high obesity rates continue to plague both adults and children, the spotlight is often placed on Type 2 diabetes. But, it differs greatly from Type 1 diabetes.
"Type 1 has nothing to do with race or lifestyle," Dr. Casas said. "It has to do with an immune process that destroys the cells in the pancreas that make insulin, so these children basically make no insulin. Before they discovered insulin in the 1920s, these children would die."
Although less common, Type 1 diabetes is severe. And unlike, Type 2 diabetes, no amount of lifestyle changes can change the diagnosis -- it is irreversible. Formerly known as juvenile diabetes, it can be diagnosed at any age, even into adulthood.
"It can't be cured by diet, exercise. It's a common frustration for parents," said Mia Forehand, a Tyler Type 1 board member who has direct contact with Dr. Casas when a new diagnosis is made.
Upon diagnosis, immediate attention is given to the child and his or her family because it can be overwhelming, parents say. Families receive a "blessing basket," filled with snacks to be used to treat low blood-sugar levels. Dr. Casas said the group also provides practical advice in between medical visits.
"It's been absolutely wonderful for my patients," he said. "When new patients are diagnosed, these families come out, support them. They follow them everyday. They provide the day-to-day practical information about diabetes."
Margie Boyd, executive director for Tyler Type 1, said, "That very first meeting when you find out your child's been diagnosed with Type 1 diabetes, is so overwhelming. There's so much information to digest to keep your child alive."
FIGHTING BACK
Type 1 diabetes symptoms can include weight loss, extreme thirst and frequent urination, but it is sometimes overlooked.
"It's so common to say, 'oh they're growing', or 'oh it's the summer time', they're just thirsty, with not even a thought to test for diabetes," Mrs. Boyd said.
A normal blood-sugar level ranges from 80 to 120, while a diabetic's blood sugar can dip as low as 50 and soar above 200. Sometimes, the disease is suddenly onset as Mrs. Forehand's 9-year-old daughter's health declined within days.
"Lydia went from being a perfectly healthy child on Thursday night to slipping into a diabetic coma on Monday morning," she said.
Type 1 patients are not restricted from sugary foods, Mrs. Boyd said.
"It's not a matter of if you can eat it anymore, but when you can eat it. He (her son Jake) can have sugary stuff when he's having a low to bring him up and he's got to follow that up with a complex carb to level the sugar out."
For Sarah Wilson, she didn't know much about the disease until her daughter, Faith, now 1 year old, was diagnosed.
"I had no idea what a Type 1 child looked like," she said. "Just to see they can be OK, that was huge."
She said a daily struggle is always being on guard for "lows" in her daughter's blood sugar.
"Babies get fussy for no reason, but anytime she gets fussy, I have to first think, 'Let me take her blood sugar.' I can't just pick her up and console her. I have to first think, 'where's the bag, let me poke your finger and squeeze and find out if she's OK … I just took for granted how I could just run in there and pick her up and tell her it's going to be OK … there's no break from it ever."
With the help of the Tyler Type 1 group, Mrs. Wilson's anxiety has been calmed.
The group has a Facebook page, which allows instant access to encouragement and information, she said.
"At any time, if I'm having a bad day, I can get on there and tell them what I'm going through, immediately, I have three or four people saying 'hang in there, we've been through that,'" she said.
Board member Christel Kirkpatrick's teenage son, Logan, has dealt with Type I diabetes for 11 years.
"From the day they are diagnosed, they are insulin independent," Mrs. Kirkpatrick said. "That's why we think support is so crucial, because it's relentless. Every single day, every single meal, you have to contend with it. Every piece of food, when you exercise, all of these things affect your blood sugar."
MAINTAINING
Children with Type 1 diabetes learn early on they have to be vigilante in checking their blood sugar level. This can happen up to 10 times a day, and depending on the child, he or she may receive insulin shots or insulin is administered directly in the body via a pump. Some carry a special diabetes bag that includes a meter and other materials for emergencies.
"It can never be away from her because that's her lifeline," Mrs. Forehand said.
Each day, some parents record blood-sugar levels, resulting in long lists of figures. In addition, the child must learn to maintain a proper blood sugar level while at school.
Logan Kirkpatrick, 17, has handled the disease since he was 6 years old. He said before he was diagnosed, he'd drink about two gallons of lemonade with out a second thought.
When diagnosed, it took some time to adjust, but today, he can properly manage his blood-sugar level.
"Now, I have an insulin pump and I've learned to manage it a lot better so I can just about eat whatever I want to for the most part," he said. "It just takes practice and it gets better as time goes on. You learn to feel your body better and understand yourself better and know what you can and can't have at certain times."
Dr. Casas said as the word spreads about Tyler Type 1, other families in surrounding areas are becoming interested in establishing a similar group. He said East Texas is fortunate to have a group that lends social support, while providing education.
"This is very unique to have a group started by parents, not an institution. It's incredible what this is bringing to this area, to these families."
Mrs. Boyd said, "All of the kids are going to grow up and be adults with it unless there's a cure found. So equipping them to actually manage their day-to-day blood sugar levels is the big goal because over time damage is done that later in life an have some severe complications … That's huge for us."
The support group meets at 7 p.m. every third Thursday at Calvary Baptist Church, 6704 Old Jacksonville Highway. For more information about the Tyler Type 1 Foundation, visit www.tylertypeone.org.
Updated Tuesday, Feb. 16, 2010 at 4:03 p.m. CST
Updated Tuesday, Feb. 16, 2010 at 4:03 p.m. CST
