This has nothing to do with Neurofibromatosis. Just a fair warning. But it DOES have to do with our fight for proper medical care. Sometimes, I wonder with some of the medical care our family has gotten, if the doctors are just tired of hearing "Hopkins"...That is not to say that we haven't received some great care, but there are times, when I just wish I had gone to college to be a doctor. I would definitely treat people with more care and respect than I have gotten.
My 11 yr old daughter is being seen at the Children's Hospital Urology clinic....AGAIN. This poor girl has battled UTI's since she was 4 yrs old. Quite exhausting. For HER and for ME. The specialists can't seem to figure out why the infections keep happening, leaving all of us frustrated. At one point my daughter begged me...."Isn't there some kind of surgery, to fix me?"
My heart breaks for her. She knows she is different....She knows the doctors can't figure out why, and she is as desperate as I am, to find a "cure".
Riley has taken countless bottles of antibiotics, and has taken part it NUMEROUS urological tests. None of which have pinpointed the cause of the UTI's.
My daughter is now on "prophylactic antibiotics" and has been for the last few yrs. But we still have issues. We seem to have exhausted treatment, leaving the doctors and our family wondering what's next.
We have had to fight for every test, though. I feel like I have become a professional when it comes to going into the doctors office, and pushing them to give us full care. I get so sick and tired of hearing the "Oh it's nothing." or "Let's just give this a few months." I WANT TREATMENT NOW!
I am the one who asks, "What's next?" While the doctors are ready to put Riley's chart in a box and "let her grow out of it".
It takes effort to get what you want and need...Sometimes, it takes going to a different specialist...One that WILL go the extra mile, to help you figure out the answers. I've been learning this...And RE-Learning this....I AM THE ONE IN CHARGE---NOT THE DOCTOR! The doc just gets to be the one who follows through with the proper referrals and/or treatments.
It's definitely been a hard lesson for me. I am the type of person who HATES confrontation....One who never questions anything! So, when it comes to standing up to a person who has 15+ yrs of College, and degrees on the wall....WHO AM I?
I am a PERSON! I MATTER! MY CHILDREN MATTER!