A mothers instinct

So I went around the red tape and took Joey to the ER to get his head scanned a couple of weeks ago. During the focused neuro exam Joseph had difficulty lifting his left leg, tracking with his eyes and coordination tasks. I knew I had done the right thing. The results of the scan were not what I expected; it showed he had mild/moderate atrophy of his frontal and parietal lobes inconsistent with a child of the age of 11. What does this mean? I don’t know….

Frontal lobe atrophy is a reduction in the size of the frontal lobe, the foremost area of the brain. Result, changes to its shape and structure can cause a variety of problems. Patients with frontal lobe atrophy may experience it as a standalone issue or in association with an underlying disease. Many neurodegenerative diseases like Huntington’s are associated with shrinkage in the frontal lobe over time. Patients with this neurological condition can develop planning, emotional regulation, movement and critical thinking impairments. Sometimes the condition onsets slowly. The symptoms are sometimes mistaken as signs of mental illness before more progressive symptoms indicative of neurological problems develop. For example, a patient might have disorganized thinking, emotional outbursts, and hallucinations. As frontal lobe atrophy progresses, the patient may start to develop movement disorders and more obvious neurological deficits. The frontal lobe helps the body plan and executes voluntary movements. Patients with degeneration in the frontal lobe may move more slowly, shake or have difficulty with fine motor tasks. This can also affect speech and eating, as the patient may have difficulty swallowing and articulating clearly.

So in desperation reaching out to every doctor I know and some my friends no we have come up empty handed to any thought of what this means. We have an appointment with a pediatric neurologist in April and hopefully that is where we will find answers. My biggest fear is that we have been poo pooed away so many times in regards to this being an organic cause I just hope the doctor looks past all of Joseph’s psych diagnoses and looks at his symptomology. He has never stabilized; he has never gotten any better. This is all just a lot to process. We have spent the last 3 years institutionalizing my son thinking that was the best treatment…. We have spent the last 3 years with our family separated thinking we were making the best choice. I know people have said “you only did what you thought you had to” that doesn’t make me feel better.

There are so many questions and no answers. In the meantime Joseph seems to be on a back slide again, last week ending up in full blown rage stabbing himself 5 times and ending up on 24 hour watch. My heart is breaking and every day that passes this is getting harder to handle. I know that I am trying to keep it together but I am slowly crumbling. We are putting together a synopsis of his medical history to bring with us and in plowing through all the records I find myself becoming more angry and sad. Reliving all the events. At one point a hospitalist at Phoenix children’s hospital said in a note, “If headaches persist, recommend outpatient neurology consult.” Do you think anyone ever told us or followed up?! I shake with rage as I write this thinking we might have had answers 3 years ago.

All we can do is wait and hope that this time we will get some answers.