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.
The Puddles 
So relieved to hear the MRI results were ok. In complete sympathy with your frustrations though, and glad you persisted with calls. Praying with a host of others that Ben will see good progress in his relief from dizziness and healing from whatever is causing it. Sending love and hugs to all the Lakes.