
Originally Posted by
Earth Mother 2 Angels
((((((funnylegs4)))))) ~
Jon (and his brother, Michael) has been seen by a multitude of neurologists in his lifetime. When we were at Ohio State, they were enrolled in a state of the art program, where neurologists and specialists worldwide often visited for conferences. They were of great interest, since they are brothers, with the same underlying condition. I would think that at least a hundred neuros, if not more, have seen my sons in the last 46 years. None of those neuros solidified a CP diagnosis for them.
We've been through all of the neuros, who serve our hospital, and none of them is willing to take Jon as a patient outside of the hospital setting. They don't like me. They always offer trying a different seizure med, and I say "no." He doesn't need to be weaned off of meds he's been on for the majority of his life to try something different. His seizures are essentially controlled, except when antibiotics interfere with them. So, they don't want to deal with me, because I'm "difficult," and "I know everything." Yes, I've been told that to my face by a few of them.
Jon's family doc just wanted to categorize Jon's condition, and he used CP as a generic category. And this is common in my experience with general practitioners and even other specialists.
Any kind of brain damage can initiate seizures, so my boys' seizures correlate to their overall neuromuscular disease, whatever it is. I don't associate seizures specifically with CP, as I know that there are many causes for them, often those causes are unknown.
Jon's legs are not paralyzed; he has feeling/sensation in his legs and feet. He was ambulatory until 2000, with an awkward gait, but he managed to walk fairly good distances in his youth. He used a walker in his young adult years, then a wheelchair. Then he lost his ability to bear weight and walk. This is the progressive nature of his condition.
Yes, doctors just want to fix things, and sometimes attaching a label just ties it up in a nice package to be tucked away. They need an explanation, so they take the generic one, when no specific one exists.
On Michael's death certificate, one of the causes of his death was listed as: "mental retardation." He died of septic pneumonia associated with intractable seizures for 22 years. People, who have developmental disabilities, don't die from being developmentally disabled.
Of course, this was the grossest and most painful generic label ever attached to my children. It still stings.
But that isn't something that doctors think about typically. Sad to say, but true.
Love & Light,
Rose