Medical Issues, Opsoclonus Myoclonus Syndrome

Good Times Never Seemed so Good

Good Times Never Seemed so GoodGood Times Never Seemed so Good

In Good Times Never Seemed so Good, I am going to outline our next round of “guess Hunter’s diagnosis.”  It’s a fun game set to Neil Diamond’s “Sweet Caroline.”  Let’s see, who, after almost 5 years, can guess what diagnosis we are gonna get!  It’s been a nailbiter over the years, but I feel like someone is getting closer to winning the game.  Now, Why does Neil Diamond’s “Sweet Caroline” come to mind?  I simply don’t know.  There is so much I don’t know though.

Happenings as of Late

Our neuro has gracefully exited stage left with us.  After our PLEX experience, she feels like she has done all she can do.  Honestly, that wasn’t much so I’m not too sad about it.  We still need to find someone new but I’d rather eat thumbtacks.

We have a Geneticist and a Movement Disorder doctors.  They know nothing either.  Our Geneticist has requested a lot of bloodwork, which we’ve done.  They also wanted a new level of testing since no one has done anything since this started.

Since all of his genetic testing has come back clean, and we cannot get swabs from bioparents, we have to go a different route.  So, we are redoing all of his testing.  Now, I am not opposed to that because he hasn’t had them done in about 3 years.  If any doctor was worth their weight, we would have this testing done every year.

But let’s face it, they don’t care.

Coming Up

Hunter will have a Lumbar puncture to check his opening pressure and to see if he still has, has more, or has less Oligoclonal bands.  The last time he had this done, his opening pressure was high and he had 5 bands.

Does anyone know what to do with that information?

Hell no.

No one knows anything.

With that LP, he is having his MRI, MRS, MIBG, and a CT Scan.  This is to check his cerebellum and to see if any tumors have popped up.  Once we get all this information, they want us to get involved or apply to the UDN.

That is the Undiagnosed Network.  Basically, all these doctors  do is study rare things and give something that doesn’t have a name…a name.  Possibly, again, it isn’t OMS because he has been medicinal resistant.

No one knows anything.  Do you know how many doctors we have seen?  I can’t even.

As We are Driving to Nashville

I get a call as I’m turning the corner to be in the city.  It is the surgical nurse calling me to RESCHEDULE his surgery.  I thought I was going to implode.  Though I know that this sweet woman has nothing to do with anything, I was going to light into her.

I refrained.  Her job is tough and she is the one that takes the anger while the doctors are the ones who get no words spoken to them because they are “gods” and people are scared to say anything cross to them.

However, I am not too scared.  I’m so sick of being talked at, talked around in circles, lame excuses, no shows…I’m done.  This is my 7 yr old’s life.  He is not a toy to be tossed around like a hot potato.

I explained that we had just driven almost 3 hours and were in town.  That not doing the procedures was not going to be an option.  She called again, after about an hour, and said that another doctor would be doing the procedure.

So Here We Go Again

He has eaten and watched more tv than normal.  He is tucked into bed and we wait until morning.  I know the information is necessary, I just am so tired of him being poked and prodded.

As of now, we are waiting for those results and he was tested for Celiac’s Disease, so maybe somebody can figure something out.  Or, maybe, I just need to stop…take a year off…let him grow and heal and tell everyone to dirty word off.

Sigh.

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