Archive for March, 2016

We visited the new ENT yesterday and he was very nice.  He performed some in office testing and doesn’t think he has that rare syndrome.  But . . . we have to do a CT scan to absolutely rule it out.  This ENT (like so many doctors before him) isn’t sure what the cause of his dizziness is.  He thinks that Ben is “complex” and it could be all of his health issues contributing to it.  Ugh.

The bad news is that he doesn’t have an immediate solution, and he said that it could be that Ben will just have to learn to live with the dizziness and not let it impede his life (yeah, right.) The good news is that he isn’t giving up hope and will order some additional testing to see if we can come up with a solution.  So he is ordering a sleep study, another balance study, and a CT scan.

Chris’ first reaction was, “you mean we just spent $1300 on an MRI that told us nothing, and now we have to do MORE expensive testing.” Yes. Thank God we have insurance.  Even if our portion is huge, it could be SO much worse. What else are we going to do?  This isn’t resolving on its own and Ben is miserable.  As parents, Chris and I are always balancing whether each test is appropriate for the problem.  We don’t want to do invasive testing if it isn’t absolutely necessary.  The boy is poked and prodded so much, that we try to limit those more invasive tests, and only do them when the health issues and potential results are worth it.  After this summer, seeing Ben get IV after IV after IV makes us even more cautious.  He now has scar tissue inside his arms from all of the blood draws and IVs.

But the tests that have been ordered are ok.  And we feel that the reasoning behind the tests are valid towards finding a solution.

So on Friday, we go downtown to TCH to have a 24 hour blood pressure monitor put on.  Monday, we go for a CT scan.  And I’m waiting to hear back for the scheduling of the other tests. The other good news regarding this new ENT is that he has ordered all of the testing to be done in the Woodlands. I could have hugged him when he said that!

The other news is that Ben’s renal doctor called.  She is so sweet and cares so much about Ben.  So we are again playing with some medication and she is ordering the 24 blood pressure monitor.  I asked if I could just drive down and pick up the machine.  She said that it isn’t protocol but that she could try to find a place closer.  Unfortunately, Cypress and Katy aren’t closer.  I can’t wait until the new TCH hospital in the Woodlands opens up.  That could be a huge life changer for Ben.  But until then, we will continue to trek down to the Medical Center to get Ben taken care of.

It was good hearing from all of the doctors but frustrating that we aren’t any closer to an answer.  Chris and I joke that my job is taking care of Ben and taking him to all of his testing and appointments.  It is so true. But I wish it wasn’t.  Until that day that this part of our journey is over because Ben is healthy, we will trudge along this course that has been set before us.  The upswing is that Ben’s favorite way of feeling better is sitting next to me on the couch while we snuggle.  That is my FAVORITE part of my job.  It makes all of this worth it.

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It has been almost two weeks since the MRI. We haven’t heard from any doctor about the results.  So I am frustrated.  Full on frustration. Border line psychotic today. The mama bear inside of me is rearing it’s ugly head. This is has been going on two months!

The boy is getting progressively worse.  Now he never leaves the house.  Not for school, not for church, not for fun.  Nothing.  Every time he does any sort of exertion, he gets extremely dizzy.  And it isn’t immediate.  Because there are no immediate symptoms he can push himself too far doing an activity and then he becomes extremely dizzy and sick for the WHOLE next day.  Now he is scared to do anything because he isn’t sure of what the effect on his dizziness will be.

I knew that I had reached my tipping point when he couldn’t even make it through a Skyping session with his class.  He put his head down 15 minutes in the lesson and had to go lay down or he was going to pass out or throw up.  He LOVES this connection with his friends and classmates.  He looks forward to it all of the time.  For him to need to lay down in order to not get sick and miss the rest of the lesson is horrible emotionally.  I was SO frustrated after that episode that I decided it was time to start calling ALL of his doctors.

Yep. My sweet voice called every doctor to find out the status of everything according to them.  The pediatrician hadn’t received the results yet.  The neurologist was out of town all of last week, so he hadn’t reviewed anything yet.  And I had to send an email to the cardiologist.

Seriously, some times the squeaky wheel gets the grease.  And in this case, it did.  This morning I have received nine phone calls from his doctors.  Nine.  Yes, the MRI results appear ok. The pediatrician and cardiologist want Ben to start Cardiovascular Rehab at TIRR. They think that because he has been so inactive for so long that he is out of shape and can’t handle activity.  The cardiologist is moving to schedule his stent.  She also wants to speak to his renal doctor about possibly doing a 24 blood pressure monitor and some other testing. The pediatrician wants me to go ahead and schedule the balance study (side note:  I called to schedule the study and the ENT had still not sent the order over to the balance clinic. He told us in January he would do it. Ugh! More phone calls to ENT with a frustrated voice.) Then the pediatrician calls back and says that she read about a rare disorder in the ear and she called an ENT in the Woodlands and he has agreed to see Ben today in order to look into this possibility.  It may just require some in office testing and a CT scan to look at this rare syndrome.  So hopefully between Ben’s pediatrician, cardiologist, neurologist, nephrologist, old ENT, and new ENT. They will figure it out.  Otherwise, I have threatened to kidnap them and lock them up in a room until they figure this out!!!!!  They laugh at that. I, on the other hand, am NOT laughing.

So we are seeing some momentum.  Thank God.  I having been praying for this for so long. He can’t live like this.  He is miserable.  We just need someone to help him out.  Please help I plead to any MD that will listen to me.  Please help I plead at every quiet moment in prayer.  Please help I plead to anyone and everyone.  Please help.

Today I feel like help is on the way.  Thank God.


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