Jennifer from Randall Children’s Hospital shares her daughter’s courageous story

My name is Jennifer Jo E., often typed JenJo. I have a BA in Humanities from WOU, and planned to teach High School English. But I was steered unwillingly into the medical advocacy field when in 1997 my first daughter was diagnosed with Cerebral Palsy. I have been connected to this GI clinic since she was about 8 months old. My father was also diagnosed in ’97 with Multiple Myeloma cancer and I helped with his treatment and insurance battles off and on until his passing in 2004; the very same year my third daughter was born a 32 week, 4lb. preemie and spent a month in the NICU, and a month home on a heart monitor. But it’s my middle daughter, born in 1999 that brings me here now.
Jessi was born with Turner’s Syndrome. ( I will let you look it up) This diagnoses added a Cardiologist, an Endocrinologist, and eventually Urology and Nephrology to our list of frequented specialists. (Neuro, Gastro, Ortho, OT, PT, SpEd). She had several ‘minor’ abnormalities and each of them were cured and corrected surgically. But, long term and prophylactic antibiotics wreaked havoc on her system. She was on daily growth hormone injections from the age of 2 until the end of June 2013. She was a vibrant, brilliant, basically healthy girl until she was 12. At the end of her 6th grade year, she started missing a lot of school. A regularly scheduled check up for her asthma ended with a, “by the way, I’ve had a lot of stomach pain and some diarrhea…” Then a weight check determined a drastically quick loss of 7lbs. This should not happen as a pre-teen, and certainly not while on growth hormones. Fast forward to her 13th birthday, she had gone from 113lbs (just on the chubby side for her) to 72lbs. A girls size 16, back to an 8/10. She missed 47 days of her last trimester of 6th grade. I helplessly watched Tinkerbell’s light going dim. ER trips led to admittance, colonoscopies, steroids and recommendations for Remicade. I know people that it has worked wonders for, but for Jessi with already compromised heart and kidney’s it was not the best option. We made a major lifestyle change and decided to home school her for 7th grade. She and I went on the SCD diet in hopes of avoiding the heavier drugs. It and the addition of VSL-3 Probiotics, along with Azathioprine, Asacol, and Allopurinal made a huge difference. She thrived doing online school, eating the starch free diet, and doing individual food tests to see what she really must avoid. By her 14th birthday she was in her second school play, only missed 2 days of school all of her 8th grade year due to colitis symptoms, and is now a freshman in high school. We are now only Gluten free, Lactose Free and low/no sugar. She packs her lunch to school every day and is as stable as any teenage girl can be.
My husband, Brian is a self employed General Contractor and we run HIS Handywork Handyman services. His flexible schedule has been a blessing to our lives and allows me the time to take on causes that matter to us like ImproveCareNow. I will be attending the learning sessions in Chicago in October with Dr. Fridge and Dr. Colson as the Parent Lead for Randall Children’s Hospital in Portland, OR. I am excited to learn the ropes of the ICN system.

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