Posted on 05/20/2014 7:12:49 PM PDT by kathsua
The parents of a little girl in Kansas are having problems getting their daughter to eat. It’s not that she’s picky or refuses the food they offer her. Instead, she has a very rare disorder that makes it so her body aggressively attacks itself any time she eats any kind of food, with one exception.
Maehlee Her is 13 months old and has eosinophilic esophagitis, which is a rare condition causes her to get horrible diarrhea and vomiting every time she eats normal food. The only thing she can currently stomach is squash. The rare disorder makes her white blood cells attack her body every time she swallows food.
Parents Marci Flory and Kao Her are desperate to find foods that don’t put little Maehlee’s health and potentially her life at risk.
From the story:
Mother Marci Flory and father Kao Her tell the Topeka Capital-Journal that they were lucky to find that one thing their daughter could eat.
For the first several months of her life, Maehlee lived in nonstop misery as her body attacked itself every time she swallowed any food.
‘She didn’t sleep, and she started refusing to eat,’ Ms Flory told the newspaper.
At one point, she hadn’t eaten anything for 15 hours straight.
Even a single morsel could set her body against her. On recent afternoon, Maehlee found a doughnut crumb at her grandmother’s house and put it in her mouth.
Vomiting and screaming for hours followed almost immediately.
Topeka doctors told Mr Flory and Mr Her that Maehlee simply had a colic or bad acid reflux.
But, after months of enduring their daughter’s screams, the family took Maehlee to Children’s Mercy Hospital in Kansas City, Missouri, where doctors found white patches in her throat and a biopsy showed high levels of white blood cells.
‘The white blood cells are wired wrong, and when children with this condition eat food, the white blood cells come in to fight off the food because they think the food is a foreign invader,’ Ms Flory explained to the Capital-Journal.
Doctors said Maehlee had eosinophilic esophagitis, a digestive disorder. They told the parents to take her off all food and put her on Elecare, an amino acid-based medical food.
For months, the Elecare had to be fed directly into Maehlee’s stomach through a tube in her nose.
Now, she can drink the food through a bottle. But it doesn’t taste very good.
‘It tastes like cardboard. It’s the most disgusting stuff I’ve ever tasted,’ Ms Flory said.
The poor thing. Prayers offered for her.
OMG.
Poor baby!
How can she survive on just squash??
Prayers for her.
:(
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She has mine.
You got it!
It’s the same way Celiac Disease responds to gluten. I nearly lost my wife in 2005 with the same exact set of symptoms. God bless that little one.
Prayers.
Prayers for this precious child and her family!
My adult daughter also has this, but to a much lesser extent. She used to drink Pepto Bismol like it was candy before she was diagnosed. It helped only some. Her “allergy” is to anything with barley in it. She does remarkably well in taking care of herself so far.
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Thanks for posting...what a tragic story. I hope and pray the doctors can find a way for the poor darling to have a somewhat normal life. I can’t imagine the difficulties her Mom & Dad must be experiencing.
How fortunate the doctor was able to see the white patches in her throat and make the diagnosis. It’s unusual for such rare diseases to be diagnosed at all...most docs go through their entire career without seeing such cases.
My niece had really strange eating habits growing up (essentially only dry Cheerios and slices of American cheese). The docs were never able to identify any underlying problems.
Prayers for that poor child, and her family.
May God heal her.
prayers up.
“However this baby needs our prayers.”
And she will get them, I assure you.
Mine too.
She’s in our prayers. May G-D be with this child and her family.
My prayers are out. My sister had some sort of eating issue when she was born, she could not tolerate anything- even my mother’s breast milk. Doctors told my parents she would not live and they should take her home and love her until she died- which the doctors expected to happen in a matter of days. My sister was born at the end of World War II and there were not a lot of options. A Basque sheepherder told my dad to try goat’s milk; fresh goat’s milk as in milk the goat and feed it right to her. That goat’s milk was a miracle, she was able to grow and thrive on it. I am sure whatever my sister had was not the same as this baby but things like that would be worth a try. You just never know.
I know a little boy with something similar. He is one of only 5 in the US with it. I cannot recall what it is exactly, but it is horrible to watch a child suffer. He is able to eat now, but it is limited and took years before he could tolerate actual eating.
Prayers up for this little girl and her family.
bump for prayer
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