Opsoclonus Myoclonus Syndrome

Reflecting on Second Opinions

Second Opinions Good or Bad

Reflecting on Second Opinions.  When it comes to my health…I ignore 99% of it.  The 1%, is usually the kicker.  I am down for the count until I can learn to listen to my own body.  Problem is, is that I do not have time or energy to listen to my own body because I have about 8 other bodies to be concerned about.  All that being said…my health is better because I’m learning how to take care of myself and I’m seeking guidance from our physician….when I’m there for another child 🙂  I’m sure that thrills my dr!

When It Comes to my Child

Then, there is Hunter….diagnosed with Opsoclonus Myoclonus Syndrome.  After, almost 2 weeks (at onset), in the hospital, we got this diagnosis.  This diagnosis was the third and the fifth diagnosis for Hunter.  At the time we were seeking a second opinion, it had been 10 mths.  He was not any better than when we started.  Every day is a struggle for him.  Every day there is a new thing.  Every day, there is a new challenge.

First Kindness, Then Not So Much

Our Dr was very kind to Hunter…he listened and responded to emails and calls.  I felt comfortable that we were a team with the mutual goal of working towards getting Hunter in remission.  Lately, however, I feel like it is me doing my thing and he does his thing.  I know that he is a good dr and I do not question the diagnosis (so stupid, I should have pushed for genetic testing).  I just want more and I want answers.  Simply stated, I want to understand.  The need for me is that I want it explained to me 1005 times so I will finally get it.  I read through 1300 pages of hospital records.  In my reading, I took notes, made charts and asked questions of my dr friends.  Yet, radio silence on our doctor’s end.

Did I Offend Him?

Somewhere along the line, I must have offended him.  Maybe it was when I mentioned getting a second opinion because the last email I received had the words in quotes “OMS experts” (that statement was made assuming this is what he had).  I must have ticked him off.  That was not my intention.  My intention was to get any and all eyes on my son.  I believe that someone, somewhere, somehow, at some point read something that may be the key to his remission.

Long-Term Effects

See, the longer he is symptomatic…the more brain damage is being done and that is not acceptable to me.  I want to prevent that if I can.  I want him to live a life that is full and one that he understands completely.  I have 2 kids that have brain damage from FASD because of the choices their birthmother made.  It is not my desire to have another child with brain damage as well.  To my core, it hurts my heart, to see him struggle to even hold a spoon or put a lego together.

Second Opinion, Third Opinion, and a Fourth (or Fifth) Doctor

At this point, almost 2 years later.  We have left that original doctor, who gave him his third diagnosis.  At this point, of this post, we did seek a second opinion.  Through a WRONG genetics test, we had a diagnosis of Ataxia Telangiectasia Like Disorder.  This diagnosis was carried for a year.  We chose to stay with this doctor, though I have feelings.  A year after meeting this doctor, we actually went for a third opinion.  This last doctor told us the truth of the wrong diagnosis.  We ended up going back with the third diagnosis.

Confused yet?

I hate to hurt feelings during this process….but this is not about me.  It is not about our current dr.  It is not about this lady we are meeting this week.  It is all about Hunter and his future.  I will do my best to move heaven and Earth and to get him the help he needs.

I stay confused.

 

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