12/27/2008 9:28:00 PM
Mom copes with baby's hard-to-diagnose rare disease
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| Jerry J. Herrmann/The Daily Courier
Christine Hartman tries to convince her daughter, Montana, to drink some of her special formula.
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At first glance, Montana Hartman looks like a normal 13-1/2-month-old infant. However, the first appearance is misleading.
Why? The young Prescott infant has a rare disease - eosinophillia gastroenteritis in her stomach and small intestine - causing her white blood cells to attack food she is allergic to as though it is the enemy.
Christine Hartman, Montana's mother, said the white blood cell attacks cause Montana to vomit and have diarrhea, rashes, constipation and abdominal pain.
"Sometimes she can be eating food and everything looks fine. However, a biopsy may show that eating that particular food is causing the creation of ulcers in her stomach and small intestine," Christine said.
Christine said Montana was eight weeks old before they discovered the disease she was born with.
"When I brought her home from the hospital she was vomiting. Being my first kid, I thought it was normal. She was eating, screaming and throwing up. It got to where she had eight to nine diapers of diarrhea in an hour's time," Christine said.
Finally, with Montana's weight getting so low - 5-1/2 pounds at 8 weeks - and her skin turning grey, Christine took her to Yavapai Regional Medical Center on Dec. 17, 2007.
The hospital was not equipped to handle Montana's problems, so it sent her to Phoenix Children's Hospital, where she underwent a series of blood and other tests.
Four days later, after the doctors determined she was allergic to cow milk, they sent Montana home with a special formula. It worked, and her weight increased to 7 pounds.
However, two days after arriving home, Montana got worse because her body became allergic to the formula, so her parents took her to Phoenix Children's Hospital, where the doctors did an endoscopy and sigmoidoscopy to see inside her stomach and small intestine and do a biopsy.
While waiting for the results of the biopsy, the doctors sent Montana home with a special amino acid-based formula - Neocate - to make sure she had enough nutrition, and she started thriving.
This formula, Christine said, costs $350 a month. The worst part about it, she said, is their insurance, like most, does not cover the cost of it. Since Montana was 5 months old, WIC/AHCCCS (Women, Infant and Children's Health Program and Arizona Health Care Cost Containment System) has paid for it.
The results from the biopsy showed Montana has eosinophillia gastroenteritis.
Christine said Montana was 8 months old before she had her first real food.
"We started doing food trials. By doing this we've eliminated a lot of foods she is allergic to," she said. Unfortunately, Christine said, these tests and biopsies will continue throughout her life.
Currently, Montana can have some Beechnut Oatmeal cereal, pears, bananas, sweet potatoes and peaches. However, it appears that will be changing, because she evidently is allergic to something in that group. She goes in Monday for another biopsy to see what is going on in her stomach and small intestine.
Christine said what Montana eats today she might not be able to eat in the future if she becomes allergic to it.
Montana is fortunate, Christine said, because she can still take her formula from a bottle. Some kids can take it only through a tube in their body.
One big problem is children who have this rare disease have problems convincing their teachers that regular food makes them sick.
Christine said she also has a problem when she takes Montana to be with other kids.
"I am constantly picking up Cheerios scattered on the floor and watching so other kids don't give her one to eat," she said.
She said eosinophillia gastroenteritis has no known cause. In fact, she said, the doctors know very little about it.
To get more research done, Ellyn Kodroff, a parent of a child with this rare disease, and her husband, Fred, founded the Campaign Urging Research for Eosinophillic Disease. Christine, who is helping to raise money for this research, urges people to send a donation to CURED, P.O. Box 32, Lincolnshire, IL 60089.
Christine has found a website for parents of children who have the disease.
"We learn from each other. They have been a big help to me," she said. "In fact, I share with the doctors some of the things I learn to educate them on ways to care for children with the disease."
She hopes parents of children with this rare disease's symptoms will ask their doctors to check them for it. Also, she said it is important for moms not to give up on finding out what is wrong with their child.
"Moms should advocate for their child no matter what the pediatricians say and trust their gut if they think something is wrong with their child," she said.
Contact the reporter at jeherrmann@prescottaz.com
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Posted: Tuesday, December 30, 2008
Article comment by:
dana
I hope and pray that they soon find a cure or something that will help this precious little girl....my prayers are with this family......always....
Posted: Sunday, December 28, 2008
Article comment by:
No name provided
Good luck w/your daughter. Hopefully they find a cure. My daughter has food allergies and I know it is hard on her to not be able to eat certain foods-but she is a trooper and so will your little girl.
Posted: Sunday, December 28, 2008
Article comment by:
Ellyn Kodroff
I wanted to correct CURED's mailing address. The Zip Code is 60069. You can also make donations at www.curedfoundation.org
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