Kate Michaelis Nielsen updates us on her daughter: Rachel Nielsen “Rachel’s GI was very concerned about the seizure like episodes she has been having. She decided that she needed to do an endoscopy and take some deep tissue samples. The GI found blood in the top of Rachel’s esophagus; the valve was tight also. There is damage and inflammation due to acid reflux and EOE. In the stomach and the small intestine, the GI found inflammation. Along with the inflammation in the stomach, there is some erosion.  The scope also reconfirmed the dysmotility in her stomach and small bowel. We will wait for biopsy report before proceeding.

On a positive note: 1) Rachel Nielsen is grateful for the GJ she has. She is able to drink yummy stuff and vent/drain it. She doesn’t throw up as much, especially the NJ tube anymore.

2) She had fun at Prom with Ethan (Kevin Wasden) They are a “thing” now.

3) She is in the school musical as one the du-op girls in “Little Shop of Horrors”.

4) she was able to meet her FB/Facetime friend, Ansley McCormick, in person and spend 5 amazing days with her.

 

KateMichaelis Nielsen updates us on her daughter: Rachel Nielsen is a teenager diagnosed as Undiagnosed. She has struggled with getting proper care for the past 18 months until she met wonderful doctors at the U. She has developed new symptoms in the last two weeks; seizures. She passes out due to low blood pressure, low heart rate, and orthostatic intolerance. These episodes have been happening more frequently. Last week, she had a seizure and this week she has had two more!? Today, she passed out again and had another seizure. She hit her head and has a concussion as well as an abrasion on the cornea of her eye. What does this mean? Is it related to her dysautonomia or does she have epilepsy? More questions and no answers. We are at the U in the ER to have a four-hour EEG done. Please pray for answers. ‪#‎RareTeen‬ ‪#‎UndiagnosedDay‬‪#‎RareDisease‬ ‪#‎UtahRare‬ ‪#‎AwareofAngels‬ ‪#‎RareUndiagnosed

Rachel, born in 1999. The youngest of four children.  She has two brothers, a sister, and a sister-in-law. Her diagnoses are: EOE, EC, Gastroparesis, Delayed Motility, Orthostatic Intolerance, Neurogenic Bladder, Dysautonomia.

Symptoms: left sided abdominal pain wrapping around her back, nausea, vomiting, fainting, heat intolerance, cold intolerance, abdominal migraine, head migraine, bladder emptying delay, constipation, unable to eat, stopping of menstruation cycle, eyes dilate differently.

Tests completed: 1 hour gastric emptying, EGD, colonoscopy, tilt table, CMG – bladder, MRI enteroscopy, abdominal CT

Tests to complete: genetics, 4 hour gastric emptying, motility manometry, autonomic testing

She needs IVIG therapy, a j tube placed.

Worried if she will need to go back on IV feeds.  Worried if she can get enough nutrition and hydration from a J tube.  Worried about finishing high school and going to college.  She was a straight A student until this all started happening the summer of 2014. Hope she can give birth to her own children. Biggest struggle is watching her in pain, endless doctor/hospital visits, not able to do the things she loves- musicals, plays, tumbling, running, basketball, piano, violin.

Issues with medical field: doctors stopping all testing and giving the diagnosis of somatic system disorder.  She doesn’t fit into their neat little box of symptoms for diseases they know (chron’s, mast cells, mitochondrial, autonomic neuropathy) so no testing gets completed for these diseases even though she has 9 out of 10 symptoms.  Not listening to parents and the patient about what has worked and what hasn’t worked in the past so far as her treatment has gone.  Having their minds set on what they want to do and not take/seek help from other doctors.

Insurance issues: not approving testing to be done out of state.

Rachel is a positive upbeat young lady.  She is concerned about others and their feelings.  She puts others needs before her own.  She loves to sing and perform on the stage. She did competitive gymnastics for 4 years and then competitive tumbling for 2 years.  Loves to play the piano and violin, basketball and running.  She was training for a 10k when she started getting sick.

People can reach Kate (mom) at knielsen1178@gmail.com