They ran labs, performed a spinal tap, EEG and CT scan. Emma was put on an antibiotic in case it was something bacterial. After days of waiting for results and a diagnosis, her condition had worsened. Emma isn’t able to fully communicate, sit, walk, stand, or support her neck. Emma was sleeping for close to 22 hours a day. The left side of her body is weak and she has little mobility of her right arm and hand. For a few days Emma wasn’t able to swallow food or liquids. This has improved in the last 24 hours. OT has been working with Emma, and she can now swallow food and liquids. After days of waiting for results, doctors have ruled out meningitis.
A 3 view MRI was done and she has been diagnosed with a severe case of ADEM. (Acute Disseminated Encephalomyelitis)
(ADEM) is rare and characterized by a brief but widespread attack of inflammation in the brain and spinal cord that damages myelin – the protective covering of nerve fibers. ADEM often follows viral or bacterial infection. Doctors suspect that this may have stemmed from Emma’s recent battle with influenza B. The symptoms of ADEM appear rapidly, beginning with encephalitis-like symptoms such as fever, fatigue, headache, nausea and vomiting, and in the most severe cases, seizures and coma. ADEM damages white matter (brain tissue that takes its name from the white color of myelin), leading to neurological symptoms such as visual loss (due to inflammation of the optic nerve) in one or both eyes, weakness even to the point of paralysis, and difficulty coordinating voluntary muscle movements (such as those used in walking). ADEM is sometimes misdiagnosed as a severe first attack of multiple sclerosis (MS). Children are more likely than adults to have ADEM. In addition, ADEM usually consists of a single episode or attack of widespread myelin damage. Doctors will often use imaging techniques, such as MRI (magnetic resonance imaging), to search for old and new lesions (areas of damage) on the brain. The presence of older brain lesions on MRI suggest that the condition may be MS rather than ADEM, since MS can cause brain lesions before symptoms become obvious. In rare situations, a brain biopsy may be necessary to differentiate between ADEM and some other diseases that involve inflammation and damage to myelin.
The treatment to stop the progression of her disease is a heavy dose of steroids. Emma has some swelling in her brain, and lots of pain throughout her body. They had a hard time managing her pain and she would cry for hours. Doctors have recently found the right medication to help manage her pain. Emma’s Doctors performed a second spinal tap to rule out some other possible viral infections. We are still waiting on those results. Doctors are concerned about her vision being impaired. They performed a VEP test, and we’re awaiting the results.
Emma and her parents are taking her progress day by day. We don’t have any indication on when Emma’s parents will get to bring her home or a real prognosis. This disease affects each patient differently. Emma has a great team of doctors and specialists by her side. Emma’s entire family is by her side praying for her recovery. The PT, Speech Therapist, and OT have been working with Emma daily to teach her how to regain all of her motor skills. Emma will have to learn how to eat, crawl, walk, talk, the use of her hands and occupational skills. My sister Lauren is no longer working, so that she can care for Emma and her recovery on a daily basis. Once her parents get to bring her home there will be aggressive outpatient therapy and frequent visits to her PCP and Neuro specialist. This has left them with Emma’s dad Dominic as the only source income to support their family during this difficult time. Emma’s parents are going to experience a very hard time mentally, emotionally, and financially. I created this page to help them get through this difficult time. I ask for any help and ALL of the prayers we can get. Help us to bring Emma home. Let’s fight this together, let’s be “Emma Strong”.
- Elizabeth Cass
- Silvana Wild
- Thomas Arndt
- Archana Mandhare
- Natalie gajewski
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