All about ADEM, the illness that put Betty Kyallo's daughter in ICU

Piece by: Grace Kerongo
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TV personality Betty Kyallo opened up about spending 4 gruelling months in hospital nursing her daughter back to health.

Betty revealed all this in a long social media post.

"My beautiful four-year-old daughter stopped walking, soon stopped talking, soon stopped eating, soon was so drowsy couldn’t keep her eyes open and thereafter went into a deep coma that she had to be taken to ICU and put on life support for a whole month. For the Larger part of her diagnosis doctors couldn’t even figure out what was wrong with her. We did numerous tests looking at every organ and blood but for a long time of hospitalization in Nairobi Hospital Children's ward, we couldn't find it. All the while she kept deteriorating every day losing one function after another. 

Ivanna got better and now she is back to her hale and hearty self.

"Today she could talk the next day she couldn't make a sentence. Thanks to God and the brilliant doctors that were so kind and gracious in their work and how they diligently treated my daughter especially Dr Ismail primary ICU pediatric carer for my daughter, the overall lead Neurologist carer Dr Oyatsi and ICU nurses, Ward doctors and nurses we finally found a name to what was eating her."

Here is an excerpt from the National Institute of Neurological Disorders and Stroke (NINDS) describing what ADEM is .

Acute disseminated encephalomyelitis (ADEM) is 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 infections, or less often, vaccination for measles, mumps, or rubella.  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 typically 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), since the symptoms and the appearance of the white matter injury on brain imaging may be similar.

However, ADEM has several features which differentiate it from MS.

First, unlike MS patients, persons with ADEM will have rapid onset of fever, a history of recent infection or immunization, and some degree of impairment of consciousness, perhaps even coma; these features are not typically seen in MS.

Children are more likely than adults to have ADEM, whereas MS is a rare diagnosis in children.

In addition, ADEM usually consists of a single episode or attack of widespread myelin damage, while MS features many attacks over the course of time.

Treatment

Treatment for ADEM is targeted at suppressing inflammation in the brain using anti-inflammatory drugs.

Most individuals respond to several days of intravenous corticosteroids such as methylprednisolone, followed by oral corticosteroid treatment.

When corticosteroids fail to work, plasmapheresis or intravenous immunoglobulin therapy are possible secondary treatment options that are reported to help in some severe cases.  Additional treatment is symptomatic and supportive.