Journal entry by Madison Adcock —
Millie has been sick since November 2018. We thought that she had the stomach virus because she got super nauseous and was throwing up. The "stomach virus" ended up going away for about a week, but then she started throwing up again and went to the doctor. She had some tests run. Nothing came back, but then she started breaking out in rashes, so she went back to the doctor. She got her urine tested, which had protein in it.
Then, in January 2019, she went to a GI that put her on acid reducers, which did not help. She started losing weight and was still feeling pain, so she went back to the GI and got an endoscopy done in February. The scope only showed an inflamed stomach, so she got put on a very strict where she could only eat carbs (like bread stuff) or meat. That lasted 2 weeks, but the pain and vomiting never stopped.
In March, they thought she might have mono, so she got tested and missed a week of school--the test came back negative. She went back to the GI in April, but the vomiting started slowing down.
Her summer in 2019 was pretty regular, with limited stomach pain. When school started back, she realized her stomach pain was increasing, but she waited to talk about it. She dropped a couple more pounds in September of 2019 and was still feeling more pain, which worried her mom.
In October, she noticed difficulty keeping food down and eating without pain afterwards.
Then, in December 2019, she realized she had lost roughly ten pounds and was throwing up no matter what food she ate. She then went to the GI again and got on different acid reducers, which still didn't help. her doctor encouraged her to take the medicine, so she did.
late January of 2020, she went to the GI again. she got a "gastric emptying" test done to see how her body processed food, but the test was overall fine. the doctor encouraged her to get her gallbladder out due to the normal test, so she went ahead and scheduled that surgery, along with an appendectomy at the same time.
the surgery was done in February 2020. her gallbladder turned out to be "sick," but she had been told her gallbladder was normal, which was confusing and discouraging. she continued to have trouble eating and she lacked any appetite. she stopped eating fully because eating made her vomit, which sadly was not fixed by her surgery. she went to a doctor for a follow-up and was now down 15 pounds, so her mother contacted Le Bonheur hospital.
she went to Le Bonheur in March 2020 and was now down 20 pounds, so they were very worried about her weight. she got sent home with protein drinks and was encouraged to come back around a week later to get an ultrasound to see if she had SMA syndrome. she was now down 25 pounds and tested negative for SMA. she talked to a dietitian and a doctor and was encouraged to stay in the hospital. she stayed for a week in late March and was ultimately treated for an eating disorder. while she was there, she got another test for SMA; got X-rays to look at her stomach function; but did not end up getting many tests run while there. their main goal was for her to gain weight because they believed it was her more of a mental problem than anything.
when she got home, they had helped her gain about 10 pounds and was on a strict diet to gain weight. she still struggled with stomach pain and food coming up when she got home. she was technically being treated for gastroparesis and stomach migraines, but had never been tested for that. she took all the meds and did what they wanted but her symptoms persisted. the doctors stopped calling, so she got bloodwork and such at her pediatrician. she stopped going back there due to the difficulty of travelling and the lack of focus on her pain. the medicine did not help and her stomach pain started getting really bad. she lost weight again.
her mother heard good things about a doctor in Oxford, but due the coronavirus, she did mainly telehealth services in April 2020. he tested her for a few different things, but then referred her to a doctor closer to our home. we waited to do much and her weight continued to drop.
she went to another doctor that believed her main problem was constipation, but her pain did not decrease with the treatment for that. she still had protein in her urine and now had blood cells in her urine too.
in the weeks of July 1-11, she was sent to a GI, nephrologist, and neurologist. she had a bad "episode" of high blood pressure, heart rate, and difficulty breathing, and the GI thought she needed more protein. the GI said she was not constipated and did not need a colonoscopy; she was told to get tested for POTS by the neurologist with a "tilt" test.
the neurologist tested her for POTS by just looking at her blood pressure and was told to take in more salt. she got more blood work done at the neurologist and the only thing abnormal was that her small nerves are not as strong as they should be for her age. he encouraged her to get 3 tests to help diagnose POTS and her nerve problems further. she left unsure if POTS was really the issue, but her mother reached out to doctors in other states and also people who had POTS to hear more about it.
her next appointment was with the nephrologist who said that he was going to look at her urine to see if she had protein still. this left us all discouraged, as she has had protein in her urine for almost 2 years, so we were hoping for something more. our mother continued to reach out to doctors in other places. she got her records to get referred to doctors elsewhere. she started having chest pain, so she is going to a cardiologist on August 13. (he specializes in POTS) she is planning to go to Houston for more tests once her papers get transferred to them. we still do not have a diagnosis and are unsure what the real problem is, but we are hopeful and looking for answers
Then, in January 2019, she went to a GI that put her on acid reducers, which did not help. She started losing weight and was still feeling pain, so she went back to the GI and got an endoscopy done in February. The scope only showed an inflamed stomach, so she got put on a very strict where she could only eat carbs (like bread stuff) or meat. That lasted 2 weeks, but the pain and vomiting never stopped.
In March, they thought she might have mono, so she got tested and missed a week of school--the test came back negative. She went back to the GI in April, but the vomiting started slowing down.
Her summer in 2019 was pretty regular, with limited stomach pain. When school started back, she realized her stomach pain was increasing, but she waited to talk about it. She dropped a couple more pounds in September of 2019 and was still feeling more pain, which worried her mom.
In October, she noticed difficulty keeping food down and eating without pain afterwards.
Then, in December 2019, she realized she had lost roughly ten pounds and was throwing up no matter what food she ate. She then went to the GI again and got on different acid reducers, which still didn't help. her doctor encouraged her to take the medicine, so she did.
late January of 2020, she went to the GI again. she got a "gastric emptying" test done to see how her body processed food, but the test was overall fine. the doctor encouraged her to get her gallbladder out due to the normal test, so she went ahead and scheduled that surgery, along with an appendectomy at the same time.
the surgery was done in February 2020. her gallbladder turned out to be "sick," but she had been told her gallbladder was normal, which was confusing and discouraging. she continued to have trouble eating and she lacked any appetite. she stopped eating fully because eating made her vomit, which sadly was not fixed by her surgery. she went to a doctor for a follow-up and was now down 15 pounds, so her mother contacted Le Bonheur hospital.
she went to Le Bonheur in March 2020 and was now down 20 pounds, so they were very worried about her weight. she got sent home with protein drinks and was encouraged to come back around a week later to get an ultrasound to see if she had SMA syndrome. she was now down 25 pounds and tested negative for SMA. she talked to a dietitian and a doctor and was encouraged to stay in the hospital. she stayed for a week in late March and was ultimately treated for an eating disorder. while she was there, she got another test for SMA; got X-rays to look at her stomach function; but did not end up getting many tests run while there. their main goal was for her to gain weight because they believed it was her more of a mental problem than anything.
when she got home, they had helped her gain about 10 pounds and was on a strict diet to gain weight. she still struggled with stomach pain and food coming up when she got home. she was technically being treated for gastroparesis and stomach migraines, but had never been tested for that. she took all the meds and did what they wanted but her symptoms persisted. the doctors stopped calling, so she got bloodwork and such at her pediatrician. she stopped going back there due to the difficulty of travelling and the lack of focus on her pain. the medicine did not help and her stomach pain started getting really bad. she lost weight again.
her mother heard good things about a doctor in Oxford, but due the coronavirus, she did mainly telehealth services in April 2020. he tested her for a few different things, but then referred her to a doctor closer to our home. we waited to do much and her weight continued to drop.
she went to another doctor that believed her main problem was constipation, but her pain did not decrease with the treatment for that. she still had protein in her urine and now had blood cells in her urine too.
in the weeks of July 1-11, she was sent to a GI, nephrologist, and neurologist. she had a bad "episode" of high blood pressure, heart rate, and difficulty breathing, and the GI thought she needed more protein. the GI said she was not constipated and did not need a colonoscopy; she was told to get tested for POTS by the neurologist with a "tilt" test.
the neurologist tested her for POTS by just looking at her blood pressure and was told to take in more salt. she got more blood work done at the neurologist and the only thing abnormal was that her small nerves are not as strong as they should be for her age. he encouraged her to get 3 tests to help diagnose POTS and her nerve problems further. she left unsure if POTS was really the issue, but her mother reached out to doctors in other states and also people who had POTS to hear more about it.
her next appointment was with the nephrologist who said that he was going to look at her urine to see if she had protein still. this left us all discouraged, as she has had protein in her urine for almost 2 years, so we were hoping for something more. our mother continued to reach out to doctors in other places. she got her records to get referred to doctors elsewhere. she started having chest pain, so she is going to a cardiologist on August 13. (he specializes in POTS) she is planning to go to Houston for more tests once her papers get transferred to them. we still do not have a diagnosis and are unsure what the real problem is, but we are hopeful and looking for answers
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