Sep 21, 2013 Latest post:
Aug 24, 2022
Thank you for visiting Megan's Caring Bridge site. The following is a brief outline of her medical journey:
December 2011 – diagnosed with a severe case of Mono
April 2012 - diagnosed with strep and influenza
March 2013 - diagnosed with Epstein Barr Syndrome (another type of Mono)
September 2013 - Mayo Clinic - Rochester, MN - after spending a week at Mayo, Megan was diagnosed with:
- Orthostatic Intolerance, a rare autonomic nerve disorder where the body’s “automatic” systems do not adjust to gravity as a person moves to an upright position from a horizontal position. When Megan is upright, her symptoms include increased heart rate, a drop in blood pressure, severe dizziness, excessive fatigue, headaches, exercise intolerance, nausea, muscle weakness, muscle/bone pain, shortness of breath, chest pain, brain fog, pooling of blood in her lower legs and temperature regulation problems. There is no cure and only limited ways to treat this disorder
- Chronic fatigue
- Chronic daily headaches
- Chronic musculoskeletal pain
- Severe joint hyper-mobility
- Abnormal brain MRI.
October 2013 - Mayo Clinic - we spent the month at Mayo for an out-patient treatment program. It focused on living with the pain and symptoms by ignoring them. The best part of the program was meeting other families from across the country who are dealing with the same issues.
February 2014 - Mayo Clinic - Megan was given a 3 hour EEG to observe her brain waves because her symptoms had worsened. Since that test was inconclusive, she was admitted to Mayo's Children's Hospital. They conducted a 48 hour video EEG which confirmed that she was not experiencing seizures. The neurologists also told us that she may have a sleep disorder which we had been saying since the fall but we could not get the doctors to believe us.
March 2014 - Noran Neurological Clinic - Minneapolis, MN. We spent almost a week here to try and get answers about Megan's sleeping issues and her abnormal brain MRI. The neurologist said the MRI shows that there has been some bleeding in her brain and that she will need to have that re-examined on a regular basis especially since her brother, Adam, had brain surgery for the same thing when he was 2 years old. The doctor diagnosed her with a severe sleeping disorder and sleep deprivation. She was started on two medications at that time.
April 2014 - Noran Neurological Clinic. Despite being sedated, Megan was having episodes where she was not able to fall asleep at all some nights. The neurologist ordered a 24 hour sleep study which was completed in their clinic in Blaine, MN. The sleep study led to an increase in her medications and the following diagnoses:
- severe sleep deprivation
- sleep initiation insomnia
- restless leg syndrome
- delayed sleep phase disorder. This is the most serious because it is a malfunction of her circadian rhythm. This means her body is not "programmed" to fall asleep until around 5:00 am each morning. There are limited treatments for this and because it wasn't diagnosed earlier, it is now considered severe and much harder to treat.
June 2014 - Noran Neurological Clinic - the neurologist referred Megan back to the Mayo Clinic for a followup MRI and because his treatment was not working for her sleep disorders. The medications had been discontinued by the end of May as they were having adverse effects on Megan
October 2014 - Mayo Clinic - Wilson’s Disease. This is a very rare genetic liver disease that Mayo suspected Megan had after her blood tests showed that the copper level in her blood is twice the normal limit. With Wilson's disease, the body is unable to discharge excess copper and it deposits the excess in the liver and brain causing significant damage to both. Megan had been having trouble eating and drinking for over 2 months and most food and beverages taste metallic, acidic or plastic to her. She is not getting much nutrition at all because she is simply unable to eat. However, the doctors decided that Megan does not have Wilson’s Disease but they do not have any diagnosis whatsoever for her taste disorder or high copper level.
December 2014 - Mayo Clinic - We met with one of the pediatric neuro-surgeons who had operated on Adam and finally he was able to give a definitive diagnosis on Megan's brain abnormality. He said it is evidence of bleeding in her brain at one time but that it has not bled recently and does not explain any of her current diagnoses or symptoms. Taste Disorder - a head CT was completed to check for sinus disease which would help explain her taste disorder but the CT was negative.
February 2015 - Mayo Clinic - We met with an ENT (Ear, Nose, and Throat) doctor who specializes in taste disorders. After examining Megan as well as her brain MRI and sinus CT results, she concluded that her eating and drinking problem could not be explained nor did they have a treatment plan. We were told that this is something that Megan will just have to live with.
April 2015 - Mayo Clinic - Non-24 Hour Sleep Disorder - the sleep specialist said Megan's case is very complicated and believes she now has worsened from Delayed Phase Sleep Disorder to Non-24 Hour Sleep Disorder. There is no treatment for this disorder and it is considered the most severe sleep disorder. The majority of people with Non-24 Hour are totally blind and it is extremely rare for a sighted person to have this disorder. Megan's circadian rhythm does not recognize light in the normal way to establish normal sleeping patterns. Instead, her sleep time moves steadily around the clock and at the present time, there is no way to treat this. The best treatment is to let her sleep this varied sleep schedule so she does not become severely sleep deprived like she was prior to diagnosis and she was trying to function with the normal society hours of awake times.
May 2015 - Taste and Smell Disorder Clinic - Washington, DC - the neurologist discovered that the receptors for taste and smell in Megan's brain have been damaged by the 2 cases of mono she had in 2011 and 2013. She underwent the procedure - "transcranial magnetic stimulation" - in hopes of stimulating the damaged receptors. Megan saw a slight improvement with eating and drinking the first 2 days after the TMS procedure. Unfortunately, it changed drastically on the 3rd day and is worse now than before the procedure. He was unable to explain the elevated copper level in her blood which is now 2 1/2 times the normal level....quite a difference in only 7 months.
October 2015 - Community Memorial Hospital - Redfield, SD - During a trip to the emergency room, Megan's blood was checked once again and her copper level is still double the normal rate. Through her new doctor at Mayo and that doctor’s consultation with a liver specialist there, it was decided that Megan should see a geneticist.
December 11, 2015 - Mayo Clinic - Megan met with a geneticist at Mayo and because of her rare and multiple disorders, he is referring her to the Mayo genetics research team.
December 21, 2015 - Mayo Clinic - we met with the Mayo representative for the genetics laboratory who will be conducting the most extensive genetic testing if insurance is approved or we pay outright for the testing. We also met with the Mayo genetics research team. Megan will literally become a research project for Mayo as they begin to enter the genetics testing field.
June 9, 2016 - Mayo Clinic - Megan's blood was tested again to check on her elevated copper level. I requested a referral to the hematology department in hopes of some answers regarding this elevated level that none of the doctors have ever seen.
June 14, 2016 - Mayo Clinic - Megan was tested for Hodgkin's Lymphoma. The tests were negative and because she does not have cancer, the hematology department will not accept her as a patient for any further testing. They have never seen a copper level that high and don't have any idea what could be causing it.
September 2, 2016 - Mayo Clinic - Megan learned the results of the genetic testing: no results to explain any of her current disorders and symptoms. A new diagnosis was discovered: Long QT Syndrome - a serious heart condition.
October 13/14/17, 2016 - Mayo Clinic - Megan met with a GI specialist and surgeon who recommended a feeding tube. She received a NG tube to start immediate nutrition and did other testing in preparation for surgery.
October 21, 2016 - Mayo Clinic - Megan had surgery to have a G tube inserted for feedings.
December 2016 - Mayo Clinic - extensive testing for Long QT Syndrome. Medication started.
January 2017 - Megan had an adverse reaction to the cardiac medication and it was discontinued. She is unable to have the cardiac surgery so she will just live with this condition as well.
March 2017 - Megan was not able to tolerate the prescribed formula for her feeding tube and was started on another formula.
April 26 & 27, 2017 - Mayo Clinic - the elevated copper level in Megan's blood was "evaluated" - we were told not to worry about it.
June 14, 2017 - Mayo Clinic - quick recheck
July 19 - 21, 2017 - Mayo Clinic - new "primary" doctor consultation and blood work
July 23 - 25, 2017 - Mayo Clinic - Megan was unable to do appointments because of her sleep schedule so we will be back in 2 weeks
August 6 - 10, 2017 - Mayo Clinic - blood work, testing and consultations. Megan received a new diagnosis of POTS – Postural Orthostatic Tachycardia Syndrome meaning her original diagnosis of Orthostatic Intolerance has worsened since 2013.
November 14 - 16, 2017 - Mayo Clinic - GI recheck of feeding tube and appointment with dermatology
April 11 - 16, 2018 - Mayo Clinic - dermatology recheck, blood work, IV therapy discussed
May 1, 2018 - we received an email from her one of her doctor's at Mayo Clinic, “I'm sorry that there doesn't seem to be anything else that we can do even though her symptoms continue to worsen.”
September 23, 2019 - removal of gallbladder in hopes of improvement with pain and nausea with eating
November 20, 2019 - happy 21st birthday Megan -- loss of consciousness and fell onto concrete floor
November 29 - December 21, 2019 -- Mayo Clinic -- tests and scans provide diagnosis of Gastroparesis and anatomically incorrect transverse colon
March 2021 - Extensive testing at Mayo Clinic - problem discovered with her small intestine
April 2021 - Gastroparesis Specialist -- Cleveland Clinic in Cleveland, OH -- ordered more testing
January 2022 - Emergency appendectomy - Aberdeen, SD
May 6 - June 4, 2022 - Extensive testing at Mayo Clinic due to inability to tolerate nutrition and hydration which has been ongoing since her appendectomy in January. She receives all her nutrition and hydration through her feeding tube.
June 29 - July 14, 2022 -- Rochester - Mayo St. Mary's Hospital - hospitalized for malnutrition and dehydration.
July 14 -August 2, 2022 -- Rochester - follow-up appointments and complications after hospitalization