We followed up with the neurologist yesterday in Fort Myers. He wanted to see Brandon and go over his test results and examine him for signs of neurofibromatosis. According to the doctor he spoke with Brandon's pediatrician who told him that Brandon has lisch nodules in his eyes. Lisch nodules are one of the symptoms of neurofibromatosis. I already knew this. He saw a genetics specialist when he was six or seven because he had multiple café aulaits on his body. They told me he needed to have another symptom to be diagnosed. We are looking for these lisch nodules or freckling in his groin or/and armpits. He sees an eye specialist once a year to look for the nodules in his eyes. He has had neither. I explained to the neurologist that Brandon has iris cysts, not lisch nodules. I wanted to scream at him! We have been down this road and back again. He let me know that he wanted to see Brandon in one year and recommended that he have a physical therapy evaluation to see if they can help with is balance and gait. More appointments! I sure hope he doesn't expect me to drive to Fort Myers once a week for physical therapy. Knowing our luck his insurance won't cover it anyway.
My evening closed with a visit for Brandon's med management with the psych group we take him to. He asked Brandon some monotone questions. I asked him about better managing his ADHD and he gave a slip for labwork and said see you in twelve weeks.
Overall I have had a throughout run around which is completely normal I suppose.
No answers, more questions.
Why does it take so long to get no answer? What are we missing, what are they missing? Is this why my mind is missing?
He is eating again, which is AWESOME! Gained a few pounds.
Subscribe to:
Post Comments (Atom)
Posts
No comments:
Post a Comment