
Misdiagnosed Autistic teen fighting for her life
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We are the Lutz family - Mom, Dad, two girls and an incredible story of an Autistic teen fighting for her life.
Our story begins with Isabel - our eldest daughter, now 19 years old. Isabel was misdiagnosed in 8th grade as a behavioral problem. She was medicated incorrectly and suffered severe health issues. She began vomiting, lost weight and fell off the growth chart. Failure to thrive was her medical diagnosis. It took three hospitals, hundreds of procedures and tests to find out she is Autistic with a rare motility disorder.
I am Isabel’s caretaker. I cannot work. Isabel needs medications throughout the day and receives enteral nutrition through a port in her intestines at night. Many nights revolve around making sure her pump is delivering nutrition. Many nights revolve around her not understanding why this is happening to her as she was told by doctors over and over for four years that she was going to die. It is heartbreaking.
My husband, our sole provider, just broke his knee cap. He needs surgery and won’t be able to work for 6 weeks. We have no income.
Isabel was recently dropped from Medicaid and medical bills are overtaking us. We can’t find affordable healthcare. We can’t get formula or supplies until our bills are paid.
We need your help.
Please consider donating today.
Thank you.
THE LONG STORY
In 8th grade Isabel was called in to see the guidance counselor. There was a behavioral issue. Isabel was not performing well, missing classes and becoming a problem. They told me she needed to be evaluated by a psychiatrist and likely medicated if she was to stay in school. The diagnostician quickly dismissed her saying she has no desire to make any testing work but they would medicate her for being over active. They gave her a long list of letters - ADHD, ODD, bi-polar, all of it. So we medicated her.
Over the next couple of months it was clear the medications were not working. Back and forth we went with medications, finally settling on one that was making a minor difference. But, the medications were making Isabel so thirsty she was going through a gallon of water a day. She started vomiting constantly and losing weight quickly.
Our pediatrician sent us to a local children's hospital. The diagnostician there performed many tests and determined Isabel was Autistic and had been misdiagnosed. They changed her medications. Things were better mentally but Isabel still couldn't keep food down and continued to lose weight. They sent us to another hospital.
Isabel was admitted immediately. She had lost so much weight she fell off the growth chart. Failure to thrive was her diagnosis. They put in a gastric tube for nutrition.
Over the next three years Isabel’s tubes broke over 100 times. We were living in hell. The amount of anesthesia running through her body was a concern. The hospital threw in the towel telling me they would not do any more surgeries on Isabel.
I asked them to collaborate to call another hospital, and see if we can find out why this is happening. Why are her tubes busting? Why is she vomiting and losing weight? There had to be a way.
We were sent to another hospital. They put in a new port - into her intestines, a tube in the Jejunum. Slowly, at a snail's pace Isabel started gaining weight even though the tubes continued to break regularly.
Then, we got a break. There was an opening for a motility test at the new hospital. This test would tell us exactly what was happening from the minute Isabel put food in her mouth until it came out.
The test showed that Isabel has a rare motility disorder. Her stomach works until she begins eating. Then it goes dormant and her pylorus goes into overdrive working five times harder than it should. This is why she vomits. Her new diagnosis was Extrinsic Autonomic Neuropathy.
A year later Pylorus surgery was granted. The doctor said Isabel's suspicions were correct. She had Pyloric Stenosis causing the tubes in her stomach and intestines to break.
Since this last surgery Isabel’s tubes have not broken. She still vomits but she has met her goal weight. We are in the process of teaching her to eat without vomiting.
Isabel's next step is occupational therapy and continued enteral nutrition. She needs surgery for a prolapsed rectum and several hernias. But we can't get treatment.
About four months ago Medicaid dropped Isabel. She turned 19. We have not been able to find affordable healthcare for her. We cannot afford any more surgeries.
I haven't worked in over two years. It was impossible to take Isabel to the hospital and stay employed.
My husband has been keeping us alive. Somehow we have just barely paid our bills. We have had a little help along the way - local charities and family. But now, with the loss of health insurance we are drowning. My medical bill debt is through the roof. I can't order new supplies, formulas or tubes until we are caught up.
Then, December 23, in a twist of fate, my husband, a self employed contractor broke his knee cap. He needs surgery and will be out of work for six weeks.
So, here I am. A mom of two girls. A wife to a contractor trying to live an honest life and raise good kids. I need your help.
Please consider donating today.
Thank you.
Organizer
Liza Lutz
Organizer
Kitty Hawk, NC