Answers for Amy
Mystery illness has mother reaching out for help
by Sarah Fay Campbell
Until the morning of Sept. 16, Amethyst “Amy” Hiestand was a happy, adventurous young girl who loved to fish and to run through the woods.
The then 7-year-old woke up that morning doubled over with abdominal pain. Her mom, Tawny Hiestand, took her to the doctor. She got a CAT scan and blood work, and "everything looked normal," Tawny said. So they went home. Amy went to school the next day.
"She lasted 45 minutes," Tawny said. They went back to the doctor and took more tests. Amy was dehydrated and they went to Children's Healthcare of Atlanta at Scottish Rite. Amy was admitted and spent six days in the hospital on heavy pain medicine. Then they realized she was allergic to morphine — a new item on a long list of allergies.
Doctors discovered the stomach pain was because the lymph nodes in her stomach were swollen. But why? Almost four months later, the Hiestands still don't have an answer.
The doctors told them the swelling was from an unknown infection, but that it shouldn't last for more than a few weeks. According to Tawny, the doctor told her that if the swelling continued, "It would be her new normal."
Tawny refuses to believe it. "My child's new normal is pain medicine? That is not her new normal."
They've traveled to almost every kind of doctor imaginable, and they still don't have a diagnosis.
And Amy’s symptoms have gotten worse. In addition to the abdominal pain, Amy has muscle aches. She has a hard time keeping food down, and on some days, all she can stomach is Pediasure. She's always suffering from a low-grade fever. Her legs go weak and she falls. She feels confused. Her memory seems to be slipping. She feels like "there is stuff crawling in her hair and she'll pick at her skin, because she feels like they crawl on her," Tawny said.
Amy can't go to Sunday school or children's church, out of fear she might catch an infection. Tawny worries about her daughter taking so much pain medicine. Blood work shows it's already stressing her liver.
None of the many doctors they have visited have any answers. The last doctor, a neurologist, recommend they try the Mayo Clinic.
"We keep thinking we'll find an answer behind this door, then this door," Tawny said. When the neurologist suggested the Mayo Clinic, it was the first time she felt like they might actually find an answer.
"We will stay [at the Mayo Clinic] for four days. They will run every test under the sun. We will leave with a diagnosis," Tawny said.
"They guarantee they will figure out what is wrong," she said.
But it's not cheap. Tawny said the cost is $10,000. Amy has PeachCare and it doesn't cover medical care outside the state.
Friends have organized a fundraiser that is scheduled for Saturday, and they have set up a "Go Fund Me" page online, and an account at Charter Bank in the name of Amy and Tawny Hiestand. The Go Fund Me page, where you can donate online, can be accessed at http://www.gofundme.com/5v5egk.
Tawny has to stay home with Amy now and will probably lose her job. She's scared of losing their home to foreclosure. They have moved in with Tawny's parents, but hope to go back home one day.
Saturday's fundraiser will be held at Joe Friday's Pizza in the Thomas Grace shopping center near Thomas Crossroads, off Georgia Highway 34 East near Highway 154. The restaurant will donate a percentage of sales from every customer who comes in between 5 and 8 p.m. Tawny and her friends will be waiting tables and talking to customers about Amy's struggle.
Tawny has also set up a Facebook page, Answers for Amy.
From all the tests and all the symptoms, Tawny said her best guess is that it is either Lyme Disease or lupus, but nobody can confirm it.
Amy tested positive on one test for Lyme, but not the other, when she was at Scottish Rite. Blood tests also showed a strep infection in her blood. They cleared that with rounds of antibiotics.
And then they started lab work again. She's been to rheumatologists, immunologists, infectious disease specialists and neurologists.
Amy's blood work shows something is wrong but doesn't indicate what. It does show that her muscles are inflamed. And one time the doctor said the labs indicate "her body is turning on itself."
"We've stopped doing labs until we get something specific," Tawny said. "Nobody is getting any answers."
Tawny said, at first, the infectious disease doctors at Children's Healthcare of Atlanta at Egleston wouldn't even see Amy.
Amy's pediatrician also thinks it is Lyme, and talked the infectious disease doctors into seeing her.
It couldn't be Lyme, they were told, because there is no Lyme Disease in Georgia.
Amy was started on a round of doxycycline, one of the antibiotics used to treat Lyme, and she got noticeably better, five days into the 10-day treatment. Her birthday party just happened to be held while she was feeling better, so Amy got to enjoy it.
"She was eating and she was gaining weight," Tawny said. They started to think she might be able to go back to Arnco Sargent Elementary, where she is an honor student. Since September, Amy has been in the home-bound program, and a teacher comes to visit her three days a week.
But two days after she finished the antibiotics, "we were back to falling, back to not eating,"
A few weeks later, around Thanksgiving, Amy started another round of doxycycline, but her body could no longer tolerate it. She couldn't keep it down. They even tried giving it to her with the anti-nausea medicine Zofran, but that didn't work.
Amoxicillin is the other common antibiotic used to treat Lyme, but Amy is allergic to penicillin and everything in the penicillin family. She's also allergic to Tylenol, two asthma medicines, and several other antibiotics.
They tried to get back into the infectious disease doctors, but "they denied us," Tawny said.
Though doctors claim there is no Lyme Disease in Georgia, Tawny said her research has discovered plenty of people in Georgia suffering from the disease. There's even the Georgia Lyme Disease Association.
Amy loves the outdoors and "attracts ticks like a tick magnet," her mom said. But they've always been very careful to spray her with insect repellent before she goes out and to do a thorough tick check afterwards. The last time Tawny found anything other than a seed tick on Amy was more than two years ago. If that tick gave her Lyme, she’s had it since then, Tawny said.
Tawny said Amy's pediatrician has been amazing. "Her pediatrician does a lot of talking behind the scenes to try to expedite stuff. She does a lot of that on her own. She stays up late making phone calls."
But she can't diagnose Amy with Lyme. That requires a specialist.
Even in all the pain, Amy thinks about other people. When she was 5, she decided she wanted to grow her hair out and then donate it to Locks of Love. She got the haircut just days before she got sick.
"Next year for Christmas, she has already decided she doesn't want Christmas gifts. She wants to use the money we would use for her and help a family with children instead," Tawny said. She also wants to start something she calls Tummy Smiles, for the children on the diabetes and GI unit at Egleston. She also "wants to donate stuffed animals, pillow cases and things that were given to her in order to cheer up other people," Tawny said.
"She will think of someone else well before she will think of herself. That's one of the things that makes so many people fall in love with her."
Amy was a preemie and had some problems with allergies and asthma. Tawny said she's always "tried to let her live as normal of a life as possible without being in a bubble."
But these days, she thinks, "Maybe I should have put her in the bubble."
On Friday, they were at urgent care. And now Amy has anemia. Iron supplements aren't helping.
One of the things Tawny misses most since Amy got sick is her daughter's bright smile.
“I want Amy back. I want to see her smile,” she said. "All I have now are fake smiles — the trying to tell me 'mommy, I'm OK' smiles. Not the bright, boisterous smiles I'm used to.”
The Hiestands may be contacted though the Answers for Amy Facebook page or e-mail Tawny at firstname.lastname@example.org. She said they're open to any suggestions for fundraisers. They can also use more Pediasure. Amy can only tolerate the clear, tropical flavor.