Every problem is one of context. When Segev was born I asked them to do an MRI of his brain and they looked at me like I was a four year old who had said something funny. "No, no Daddy (that's how they refer to the parents, mommy, daddy) MRI is the last thing we'll do, if it turns out to be necessary". So you have a system that is in place that works according to protocol and must process thousands of sick babies a year. What are the chances that that system will encounter a child like Segev?
I live by my intuition. The more i have learned to listen to my intuition the more accurately I have been able to solve problems and deal with difficult situations. My intuition said that Segev had a problem in his brain that was also effecting his entire nervous system. The assisstant head of the children's department said, "I think your boy is just a late-bloomer". I felt like I was drowning. I spent every free moment in the university bookstore medical section (latest books), 1998 not a lot of info on the internet. Segev would be bottle fed mother's milk and after one or two sucks scream hysterically for five hours non-stop.
I came up with esophageal colic. The neurologist told me that that doesn't exist. I told him i got it from one of the standard medical textbooks they teach with at the university. I told him if he doesn't believe me he can go look it up. Oh, but he shut me down, real good. He turned his back to me and from then on refused to speak to me or acknowledge my existence. No one spoke up. They complimented me on playing relaxing music in Segev's room though, brought some measure of tranquility, they said.
After two weeks of Segev's screaming the assistant head said, "I don't know how you can stand it, I would have thrown the baby out the window a week ago". Gallows humour. After a month she took us aside and said we shouldn't get too attatched to the baby (Segev still didn't have a name) and start thinking about having another child in the future.
Context. I wasn't hurt by her statement, I wasn't confused. I saw it from her perspective. I could see the system, with its slowly turning wheels, grinding some children to death, saving others. Segev was getting lost and I had to find a new perspective.
Since I was getting nowhere from the neurological point of view I focused on inborn errors of metabolism, mitochondria and whatnot. Several months later a sympathetic doctor introduced me to his boss, the head of a hospital as, "Eric is a specialist in mitochondrial myopathy". But as I learned more I understood Segev's context better, he didn't fit any of the known disorders. Many tests were done. Biopsies from his leg ( apparently there where no surgeons available so they asked one of the janitors to take it out with a spoon, the massive scar on his leg is still, well, massive) and anus. When they did the latter I got a very bad feeling in my stomach. I studied hard and went to the chief pediatric endocrinologist and said why are we checking this (lipofuscinocious) Segev doesn't fit it at all.
"We have to", she said, "go from A to Z". What?! She sent me to country's top researcher into that specific disease, far away. I sat in front of the doctor and she looked at the results. "Do you know why you are here, Mr Fischer?" I looked at her and said, "I have no idea whatsoever".
"Neither do I", she answered. "There is no reason why this test should have been performed on your son, he doesn't fit it at all".
Goodbye to the chief endocrinologist, hello context. Segev's context, of not fitting anything. Once you establish where you are, even if it is in the realm of intuition, you start to pick and choose, you start to know things. You start to become more assertive.
Like in cage fighting though you have to learn to cut off your opponent. Single dad ran into one of the zombie legion with his daughter recently (http://www.disableddaughter.com/?p=2810#more-2810) and possibly thought goodwill was raining from the skies. No fault of his, but never be lulled into thinking that those very few individuals in the medical system who actually do have your back have somehow infected their coworkers with this goodwill - they haven't, because zombies are immune.
If I appear antagonistic towards the established medical community let me reassure you with the following example.
Segev's haemaglobin skyrocketed as a result of the ketogenic diet (A treatment method I brought up 12 years ago with several neurologists. The answer was, "well, if that's the sort of thing you want to try, go ahead". Now it is the first thing suggested by most neurologists). I made an appointment, not so long ago, with the pediatric hematologist working in the children's hospital. I brought (train wreck!) Segev because I was certain there might be physical signs that she would have to see to confirm any possible problem. I explained that i was worried about the meteoric rise in the Hgb level. What did it mean?
She looked confused. "Who came up with the idea that this is a problem?" I did. "Who are you again?" she asked. The father, I explained. I'm also a naturopathic therapist for twenty years, I quickly added. Silence. I'm responsible for Segev's care, I went on. She looked like someone had just stepped on her little toe but she didn't want to show just how much it hurt.
"You understand" she began, drawing out the "you" to place emphasis, "I am a regular doctor, I don't deal in alternative medicine?"
I swear I nearly fell off of my chair.
My "and" was long and drawn out too, "And you understand that the ketogenic diet has nothing to do with alternative medicine?" Oops. Akward pause. When she did finally speak she started a lecture on the fact that with children (in general) high hemaglobin is a good thing and never indicates a particular disease.
I'm not looking for a disease here, I said. Segev is not most children, I said. Skyrocketing Hgb came as a direct result of the diet, I said. What does it mean, I asked. Silence. We need to find out what it means, I pressed. "Well...." was the response. I tried to save her some grace and offered: "why don't you discuss it with the ketogenic specialists working here two floors below, the one's who are responsible for the treatment?"
She would get back to me.
Is four months a long time to wait or is she one of the zombies?