Tuesday, January 25, 2005

No clue...

I have blogged some about Braden before, basically he is 5 years old, sweet sweet happy little boy. He has some health issues (seizures but they cant pinpoint what kind or where in the brain, severe speech delay, and some developmental delays. Within the past few weeks some small issues have begun steadily getting worse. The doctors "think" it may be seizures coming from deep in the brain, but as one looked me in the eye and said, "We dont know what it is but we know something is causing a problem".

Okay I respect that he told me he doesn't know but dang it find me someone who does know. You ahve to understand this has been an ongoing battle they try to treat the symptoms but have no idea of the cause.

Today I pick him up from school and his teacher is like I am so worried his staring out (seizures) were almost constant today.

I just lost it, I am so sick of doctors not knowing what is wrong within the last 3 weeks he has had a weakening on his left side, his left eye is turning in we have had to have glasses this is how fast it is getting worse 3 weeks.

I called my primary care physician and basically she doesnt want to refer me anywhere different even though I told her Little Rock has said they dont know what the problem is. So her answer drive the 3 hours to Little Rock and set in the Hospital ER and make a doctor see him. we have an appointment on February 28 in Little Rock but things are getting continually worse daily and there has to be a reason I dont want to wait till he is convulsing in the floor and not able to breathe before we decide he has to be seen. I went ahead and called the nueo on call and she said that she would talk with the doctors tommorow and they may admit him for testing and MRI's etc at Little Rock Childrens. After talking with Matt we are going to give Little Rock one more chance we will be seeing a new doctor an Epitologist, but if we put Braden through all this testing and we still dont have a diagnosis or a reason then I told Matt I will fly to Pennsylvania I will fly whereever, but I would not just sit idle. If our local pcp wont refer us I willg et a new pcp I have reached my breaking point this is my son and "we dont know" is no longer acceptable.

Okay I guess I have vented enough for one blog session but that is where I am at with BRaden medically today.


Nixon Casablanca said...

As I've told your husband, if you guys ever need a place to stay, or anything else while you're in Little Rock, just e-mail me. My wife and I live here, and would be glad to help.

kel said...

THanks, I got home from a very long trip to Little Rock today. QUick update was a very long day and too long to go into right now. Good news is no masses in the MRI that was done today. I had a very strong disagreement with the doctors and we will no longer be using that doctor. The good news also is at least part of the problem of the worsening seems to be that when they atarted the new medication about 3 weeks ago on Braden for some reason it is not passing thru his system it is building so basically he is overdosing so we are going to use other meds to flush it out. See if this helps the big thing was finding out that there wasnt any masses that had been missed.