Veronica was born in April, 2015 with supraventricular tachycardia (SVT). A heart condition she outgrew by the time she was 6 months old. She was slow to crawl and walk, but at 1 year old it was discovered that she needed glasses, shortly after she crawled and walked.
It was also discovered that she has minor speech delays, but also has chronic ear infections. On August 15, she was diagnosed with myoclonic epilepsy, September 1, she had an MRI to further look at her brain. The following day she was pulling at her ear, so I took her to Urgent Care, sure enough, ear infection #8. They gave us antibiotics and sent us home. The following Friday, I picked her up from daycare and something wasn't right. Her care giver reported that she was a little cranky and hadn't eaten much, also was pulling at her left ear.
I took her back to Urgent Care, now she had a bilateral ear infection even though she was on medication. They gave her a shot of Rocephrin to clear it up and asked that we come back Saturday morning because she had lost 2 pounds in the last week. She was considerably more clingy and tired when we got home.
The next morning she was far more weak. I took her back to Urgent Care, but she could hardly sit up. The doctor said she was weak from dehydration, gave us new meds and sent us home.
On Thursday we had a totally healthy, lively 16 month old girl, by Friday there was a drastic difference. She was lethargic and clingy. Over the next 12 hours she lost the ability to stand, sit, hold her head up, talk or even smile. By 10:30 Sat. morning she had gone from lethargic to rag doll, so I decided to take her to the ER. They ran a bunch of tests from spinal taps to x-rays and all kinds of blood work. Nothing was coming back with any information, but she was extremely weak, not even responding to blood draws, IVs, etc. We were transferred to the University of Iowa Sat. afternoon and she was admitted Sat. night.
Again more tests were run, but no answers. In the next 48 hours she had not improved with strong antibiotics and the University started to rally the troops. We have met with genetics, metabolic, neurology, neuromuscular, etc. to try to figure out what is wrong. She has had more blood drawn, an EEG, CT, and multiple examinations. She has since lost her ability to swallow which has landed us in the PICU so they can keep an eye on her airways. The doctors feel that they have narrowed the focus to neuromuscular or autoimmune.
September 15th she had a spinal and head MRI along with an ECG to determine which disease/ disorder she had. Unfortunately, the results of the tests were normal. No indication was made for any of the disorders/ diseases they were anticipating.
The doctors are frustrated, we are frustrated and just want our little girl back. We have a strong faith and know that God is on our side and guiding the hearts, hands and minds of the doctors. We know we are in the BEST place possible for answers to be found. The doctors, nurses and specialists have been and continue to be amazing.
Thank you for your support and we walk with our daughter on this journey. The last few days have been exhausting and overwhelming, but we have so much support from friends, family and coworkers, we really couldn't ask for more.
Funds are being accepted on behalf ofof Verinica's parents, Barb and Dave Sullivan