Sunday, February 1, 2015 share what we know about monophasic ADEM

...we have learned more than we care to know this past month.

I haven't been writing much lately...partly because I have been overwhelmed, partly because I have been on hospital time, and partly because the moments I have had free...I have spent them answering the dozens of texts and emails and phone calls of concern that we have received.

And for all of those well wishes...I will be ever grateful.

Looking back, the last time I wrote was 20 January.  Abbey had been making excellent gains with respect to all of her skills.  She was nearly ready to be discharged from both physical and occupational therapy and she was all set to begin attending school for half days...but she caught a cold virus.

Will came down with the same virus, one day later.  Neither of them were able to attend school all week.  It was an ugly virus for both of them.  They had sore throats, fevers, and awful coughs.  While Will was slowly getting better, Abbey just couldn't shake the fever.

By Friday the 22nd I had already had multiple conversations with her pediatrician, we had visited the emergency room, and we even had a follow-up visit.

Each time we were told:

  • Be patient. 
  • She is going to be fine.  
  • The virus just needs to run its course.  

By Saturday the 23rd, her fatigue set in and her speech became slurred.  She had quit eating and just wanted to sleep.

When she woke up Sunday morning Mark and I realized that her slurred speech wasn't just from her fatigue.  The left side of her face was droopy and she couldn't smile with both sides of her mouth and she was drooling. As soon as we decided to take her to the hospital again we tried to get her to eat and at that point she started to vomit (we now know, this is another neurological symptom).

Thank goodness we live where we live.

I am so thankful we are in a community with one of the top Children's Hospitals in the country.

Abbey was diagnosed with monophasic acute disseminated encephalomyelitis.

They are considering this the same attack (monophasic) of ADEM that she had right after Christmas.  Apparently the cold virus she had 'interrupted' her healing process.

The doctors have tried to assure us this shouldn't happen again.

Abbey has a much longer recovery ahead of her this time.  While her acute symptoms have recovered, the damage to her brain was in her brain stem this time.  Her mood, behavior, and affect have been affect the most.

I feel terrible for her.  It breaks my heart to see her struggle.

Our family is exhausted and overwhelmed.

Having said that, we have been humbled by the outreach from this community we are so new to, and by the comfort from friends and family both near and far away.

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