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OMS: Where We Are Now

Here we are…almost 3 months into our OMS journey (Opsoclonus Myoclonus Syndrome).  It has not been the easiest time.  We spent about 2 weeks, at onset, at Kosair’s Children’s Hospital (now Norton’s Children’s Hospital).  During that 2 weeks, he had 8 high dose steriod treatments and 1 high dose IVIg treatment.  Once we were released, we went back a month later and we got the first Rituximab treatment.  In 2 weeks, we went back to get the next dose of Rituximab.  We will go back in January to get the 3rd dose.

The steriods were to get the inflammation down.  The IVIg is immunotherapy and it replaces the good stuff in his body.  Rituximab is a type of chemo treatment that specifically kills off the B antibodies that are confused and attacking his brain.  The first dose killed off the majority of them.  The second dose killed off the baby ones.  We were hoping remission would come after that second dose, but sadly, it has not.

Hunter still walks around like a drunkard, basically.  He walks with his feet out, like a duck to steady himself.  Stairs are still a challenge.  Mornings and after naps are still filled with uncertainty as to how he will be.  He is more tremulous during those times and when he is doing something that has focused movements with his hands (ie holding a fork/spoon, pencil, coloring, etc).

He is still highly emotional.  I know that he is 3 but it is almost like have 100 kids that are 3, at the same time.  It is exhausting.  He either has hypersomnia or insomnia; eats well or does not eat well; walking or not walking well.  There is not an in between. His eye is still turned in (apparently that is normal for OMS kids) and they still twitch….all the time.  It is so weird.

We start monthly IVIg treatments next month.  Our prayer is that we can get them through home health so I do not have to make that drive and sit in that itty bitty room for 8 hours.  Our prayer is still remission, of course.  Our goals are to continue either/or (or both) get a mobility service dog for him and we still need to raise money to redo our downstairs bathroom to make it more accommodating to him when/if the need arises for constant use with his walker.

I do not know what the future holds, but I do know the One who holds the future in His mighty hands and I will choose to trust and obey…………


2 Comments Post a comment
  1. jenn56093 #

    Praying for your family, love you!!


    September 2, 2017
  2. Deb #

    Praying for Hunter, and for you and your family.


    September 2, 2017

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