In no particular order, here are some of the lessons we learned:
Specialists Don't Necessarily Breed Answers
When we first got our appointments set up with Genetics, Neurology, etc., I breathed a sigh of relief. All we had to do was wait a month or two till those appointments, and we would have answers.
Ha ha ha ha ha ha!
That, of course, didn't happen! First of all, we never got any answers. But secondly, I had really put too much trust in those medical specialists. They are very smart people, but they are not God! Having never seen a specialist before, I believed that a visit with a specialist would answer all questions, reveal all mysteries, and leave us completely satisfied and taken care of. Instead, a visit with a specialist was simply that - a visit with a specialist. The specialists poked, prodded, nodded their heads, and said, "Okay, great, we'll see you in three months." Specialists don't necessarily breed answers (though they sometimes do), and answers, when they do come, can be very slow in arriving.
Specialists Breed More Specialists
When we visited our specialists, we didn't always come away with answers - but we did come away with requests to visit more specialists.
Pediatrics sent us to Neurology, Developmental Pediatrics, Therapy, and Genetics.
Developmental Pediatrics sent us to Cardiology. Genetics sent us to Gastroenterology and a second branch of Neurology. The therapists sent us to other therapists.
It got pretty crazy.
Anyone who's been in this web-of-specialists knows how insane the specialist visit-list gets, and we were no exception. It's exhausting and overwhelming, and I have complete sympathy with anyone who is dealing with this!
Some Doctors Won't Work Well For Your Family - and That's Okay!
Sometimes you'll meet with a doctor and things just click. Your family loves him, he loves your family, and things go swimmingly from there. (Our example of this was our excellent neurologist. We love him.)
But sometimes, things don't click. A relationship is awkward, or strained, and things just don't go well. This is usually due to one of two causes:
- A personality clash between doctor and client
- A difference of care-philosophy between doctor and client
We experienced both of these at different times.
In the first type of doctor-client conflict (personality clashes), there are simply some personalities that don't work well together. For example, when one of our specialists thought that she had discovered that our son had an extremely rare condition, she was excited - in a scientific way - about her discovery. My husband, who was in a state of shock, took offense to her excitement, as many would. "What do you mean, you're excited that my son has a dangerous disease?" I, on the other hand, being of a similar turn of mind, was able to join her in professional interest. "Really? He has something really rare? Wow! Let's investigate!" Not that I was happy about it, but simply that we were of a similar personality that rejoices in scientific inquiry and rare finds. But that doctor didn't work out for us, mainly because of that personality clash between the two of them.
In another example, we had a specialist who, unfortunately and through no fault of her own, reminded me strongly of another person whom I find highly intimidating. Every time we had to see her, or even communicate, I rolled up into a ball of stress. It wasn't her fault, but it didn't contribute to a great relationship.
In the second type of doctor-client conflict (a difference of care-philosophy), huge issues can arise between doctor and client when they are of different mindsets - Western v. naturopathic, interventionist v. observation-based, etc.
We experienced this clash several times.
For example, there was the gastroenterologist who wanted us to wean our special needs baby and put him on formula. (We said NO.) Thankfully she moved to a different state before we had to fire her officially.
We had another specialist who was extremely high-intervention, high-test and high-stress - none of which fit our family's personality. We are very laid-back, and we do not like to volunteer for tests and procedures unnecessarily. If they're necessary, we'll do them. If not, lay off. That eventually led to a rupture in the relationship, though I'm not sure in the end who fired whom. One way or the other, we're thankfully out of her hands.
When you're dealing with serious illness and serious conditions, it's essential that you find doctors who fit your personality and your philosophy of care. Not every care provider will work out, and don't be afraid to change.
Modern Doctors Tend to Be Test-Happy and Intervention-Happy
In other words, very few doctors are willing to sit back, relax, and wait. They are trained, and are encouraged by current medical culture, to do something right now - whether it's order tests, perform a procedure, or intervene in some way.
Unfortunately, this is in many ways a matter not of good medical practice, but of liability. If something bad happens, it is much easier to avoid being sued if you were actively intervening, rather than waiting on nature.
It's rather like that unfortunate saying in the OB world - "The only surgery you get sued for is the one you didn't do." This philosophy is present in every arena of current medicine, and leads to some very unfortunate consequences. Doctors are pressured to do something in order to avoid getting sued, or to provide documentation in case of a lawsuit.
As an example of this, some time ago I read on the internet a doctor saying that he had that day ordered 18 MRI procedures - and he knew that only two of them were medically necessary or even advisable. The others were done simply for liability-protection purposes.
The threat of liability saturates every bit of the current medical world. Unfortunately, it results in doctors who are very test-happy and procedure-happy. We had one doctor who wanted our son to undergo a seizure test (he's never had seizures or symptoms of seizures). Another wanted him to do a very toxic swallow test, just to make sure on a minor non-essential issue. (Thankfully another doctor got him out of that.) The same doctor wanted him to undergo repeated painful blood draws in order to test one number that was slightly off on his labs. We ended up refusing after the second time through that nightmare.
If nothing else, these experiences forced me to grow a backbone!
One of the problems is that doctors do not experience the stress and pain that repeated tests and procedures cause families. When a doctor prescribes a test or procedure, he doesn't see that Dad takes a day off from work, the whole family is stressed out, the child undergoes tremendous stress and sometimes pain during procedures and tests, and the whole family goes through quite a bit - often repeatedly. He or she just sees a neat sheet of numbers after the results come in.
When tests and procedures are necessary, all of that just has to be dealt with. But when the tests are just to cover a doctor's backside, or to pursue non-essential trivialities, then they are just ridiculous. And telling the difference can be quite a trial.
Click on Part 10 to keep reading!