Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

We went for our second follow-up with the neurologist this week. I swear, their follow-ups are how they make a profit. We actually saw the neurologist this time instead of the nurse. He didn’t have any new information for us, of course.

The doctor told us that he wants to repeat the brain MRI in one year even though it came back “normal”. He said that Luke’s white matter isn’t as broad as it should be. He said this could be a “chicken or the egg” dilemma though. Since Luke’s gross motor skills aren’t where they should be for his age, his white matter is going to reflect that. I’m guessing that if you compared Luke’s MRI to one of a normally developing 9 or 10 month old, the white matter would be similar. I am really on the fence about repeating it for a few reasons. I don’t want Luke to have to go through the traumatic experience again. It was also disturbing to us as parents to see him scared, then 2 seconds later go completely limp from the anesthesia. Another thing to consider is the fact that we will have to pay out another $1000 deductible. I would definitely not think twice about paying out the money if I knew for certain that the procedure was critical for more answers. We are going to wait and see what happens. As long as Luke is continuing to make progress with his physical therapy, then we are going to hold off.

The neurologist also said there are a few other tests to perform that weren’t already done with the bloodwork that Luke had done while he was under. There are 2 blood tests that check for other kinds of dystrophies. They can also do a muscle biopsy to check for other genetic muscle conditions. There are no cures or treatments other than physical therapy for any of these outcomes. Again, we are going to wait another 6 months to do any additional blood tests or biopsies.

I also asked the doc if he had patients in the past with hypotonia who had all of the testing done, but found no cause. He said “yes”. Well, that doesn’t really make me want to do them either.

Does anyone out there have any experience with all of these crazy tests? I feel like my son is a pin cushion and a guinea pig! I just want to leave the poor boy alone for awhile and let him have fun. Maybe then he will feel more compelled to be “normal”!!!

We are still waiting on a few of the genetic tests from our neurologists office. I called the nurses last week and left a message, but of course no one ever called me back. Today, I got a call from their office to change our second follow-up appointment. While I had the girl on the phone I asked about the tests. She put me on hold and another girl came on to tell me that 2 of the genetic tests came back negative. She had to put me on hold again to pull up the other test results from the hospital website. She came back and said that they were in, but a nurse had to call me back. I thought there was only one test left, according to the lab order sheet.

Now I’m freaking out because she couldn’t tell me what it said!!!! UGH! I’m so over dealing with doctors and their staff.

I still don’t understand why we are having a second follow-up appointment either. This time we will actually be graced with the neurologists presence. Our first follow-up was only with a nurse who told us exactly what she told us over the phone 3 days earlier. It was a waste of three hours total driving time! As long as all of the blood tests are fine, I’m tempted to tell them to take their follow-up to the follow-up and stick it where the sun don’t shine! I’m convinced that doctors and insurance companies are in cahoots and just want you to keep coming back so they can pay for their next vacation.