Dear Friends & Family,
Most of you are aware that our son Hendrix has been having a pretty rough time the last couple of months. We now think everything began this past November when he was diagnosed with walking pneumonia. Soon after that diagnosis, we noticed he started having motor tics and began complaining of neck pain, nausea and stomachaches. About that same time he started having difficulty at school, pulling away from friends, sports and all of the things he normally loved to do. Unfortunately, that was just the beginning of our story.
On February 13th, with no previous warning, Hendrix began shaking uncontrollably, slurring his words and making jerky, uncoordinated movements. His eyes were dilated and he was exhibiting the signs and symptoms of a stroke, brain tumor, or a seizure disorder. As you can imagine, even though Jalayne is an RN, we were very scared, especially since Hendrix himself asked to go to the hospital because he could not control his own body. We drove him to the ER, but on the way Hendrix became extremely confused and did not remember where we were going or why. By the time we saw a doctor, Hendrix returned to normal and after a short assessment, he was discharged. Unfortunately, over the next week, Hendrix deteriorated rapidly and was unable to attend school and both of us were unable to go to work.
On the night of the 22nd, Hendrix became so unhinged that we called 911 and left for the ER in restraints in an ambulance. Two hours later, he returned to normal and the hospital discharged him again with nothing more than another basic exam. The next morning, we took Hendrix back to his pediatrician’s office and begged for help and for them to admit him to the hospital for further testing. Finally, Hendrix was admitted to the hospital for three days. After his tests showed relatively normal/benign results, we were told that our son was medically cleared and that we had a behavior issue on our hands and he was discharged. Three hours after that discharge, we had to call 911 again because Hendrix became worse than ever before.
Once again we arrived to the hospital via ambulance with Hendrix on a stretcher. We requested readmission to the medical floor for further testing, but our request was denied since Hendrix had just been medically cleared. We were then advised that the best place for him was the psychiatric unit. We spent three days and two nights in the ER with him waiting for a room to open up on the psychiatric unit. As you might imagine, there are no words to explain the stress, confusion, despair and guilt we felt during that time. Knowing this was a medical issue, we agonized over the best thing to do for our son and ultimately decided to follow our instincts and asked to be discharged immediately.
We returned home and at this point were now in the middle of a full-blown crisis. Our family was completely overwhelmed. It has been devastating for us to helplessly watch the Hendrix we know and love decline and deteriorate physically, mentally, and emotionally right before our eyes. There are no words to describe the nightmare our family has been living. We just wanted our little boy back.
After months of dealing with non-responsive caregivers here in California we chose to get on a plane and take Hendrix to the East Coast to see specialists at NYU and St. Peter’s Hospital at Rutgers. So many wonderful souls went out of their way to help us with this complicated, expensive and risky journey traveling across the country with a very sick child. Thankfully the trip was the right decision because Hendrix has finally been diagnosed with autoimmune encephalitis (along with PANS and Neuropathy) and received his first treatment infusion of IVIG on May 11th just in time for his 10th birthday.
Autoimmune encephalitis is a rare disease that causes inflammation (swelling) of the brain. The doctors believe that the walking pneumonia infection triggered Hendrix’s body to attack his brain causing severe neuropsychiatric symptoms, as well as cognitive, memory and movement dysfunction. Hendrix has been plagued with a wax and wane of debilitating symptoms including memory loss, confusion, severe separation anxiety, hallucinations, altered personality and behavior, psychosis, movements that he cannot control, clumsiness, difficulty walking, talking, chewing and swallowing, auditory/sensory issues and sleep disturbances. Basically, his brain is on fire, resulting in a sickness that is nearly impossible to describe. Because of this, we have not been able to leave Hendrix’s side, he has not been able to return to school and we both have been unable to return to work.
The positive news is that many children have recovered from encephalitis and the brain has an amazing potential to heal. Prompt diagnosis and early treatment greatly improves his chances of improving. That said, we have a very long and difficult road ahead for all of us. Hendrix needs multiple infusions and extensive cognitive, physical and psychological therapy and at this point we do not know when we will be able to return to work. It's a very scary situation to face.
We continue to live day-by-day and sometimes minute-by-minute. Some days we see more of Hendrix and other days we wonder if we will ever have our son back. We remain positive and are ever hopeful that Hendrix will recover and we will not rest until we have tried everything to save him. We have come to realize that this is more than we can handle alone and are now reaching out to our friends and family asking for help in regards to Hendrix’s medical care and expenses.
We will be grateful for any donation but we completely understand if you are unable to contribute. Prayers for Hendrix and for our family are needed as well.
Beau & Jalayne