- CASE FILE
My 14 yr old son presented with altered mental status the day after having his braces removed 2 yrs ago.
ABOUT THIS CASE FILE
My 14 year old son had his braces removed at the age of 12 and the very next day he presented with altered mental status. He had a lumbar puncture with a high elevated opening pressure. Initially he was diagnosed with HHV6 encephalitis. At first we were told it would just take time and it should resolve on it's own. He was then treated with one round of Ganciclovir with no improvement. He continued to have elevated pressure on Lp's . He was referred to a neurologist and diagnosed with autoimmune encephalitis. He started with high doses of steroids. It caused unwanted outbursts and aggression. He then received an IVIG infusion. Due to foreclosure and the sell of our home we had to move and get established with a new neurologist. During this time he started to regress. His speech became limited he intermittently lost bowel function and began sleeping more than he ever had before. I had to do basic functions for him such as bathing and wiping him after he used the bathroom. He went to the new neurologist who did a complete work up with everything coming back normal and it was said it is not auto immune encephalitis. He still continued to regress had severe constipation, abdominal pain, nausea and weight loss. A few months down the line he presented again as he did 2 yrs ago with his gate being off altered mental status and somewhat agitated, all of a sudden. He was taken to the hospital where he was given Haloperidol and Ativan then transferred to a different hospital. Upon arrival he became aggressive and it never left. The haloperidol caused dystonia and benzos caused aggression.Since that day it has been said his issues have been psychological, behavioral, metabolic, physical presenting with psychological symptoms, secondary encephalopathy, major neurocognitive disorder due to another medical condition with behavioral disturbance. Neurological disorder and developmental regression and an undiagnosed disease. He did have some promising infusion of IVIG with a new neurologist but it stared to wear off to quickly. During these IVIG treatments he presented with a rash pre treatment and it cleared post treatment of IVIG. I actually started to see my son and it was calming the aggression.The next course of treatment was Rituximab infusions to try and jump-start his immune system and treat the encephalopathy which actually made things worse. He has had lots of bloodwork, several Mri's, CT's and LP's which have all come back normal. We have found over the past two years that he has a cobalt allergy and cannot take any medications with benzene or benzos because they cause aggression. The doctors have tried treating the symptoms of aggression with anti-psychotics. But since most anti-psychotics have benzene in them it has proved to be a great challenge for the doctors. My son has his whole life still yet to live. It has been very taxing on our family. He has an older brother who cannot understand why the doctors haven't fixed him yet. His younger sister aka partner in crime also cannot understand why they cannot figure out exactly what is going on with him. I am reaching out in hopes that someone may be able to help us find an exact diagnosis/ cure so that my baby boy can live life and our family can breath again.