A Encephalitis story

---

“I thought I would have to teach my child about the world. It turns out I have to teach the world about my child.” – fromAutism Spectrum Disorders page

 

Flipagram Photo Timeline:  https://flipagram.com/f/g0QJfj3B8g

My name is Chrystal Carpenter. I am a single mom and a business owner. My son, Blake, turned 14 in January. He was born healthy, but his medical issues began when he was diagnosed with Meningoencephalitis at just three weeks old. As a result of that, he has Epilepsy and Cerebral Palsy.  It took 13 years, but doctors finally identified the exact point in his brain where the seizures originated. So, on July 29th last year he underwent brain surgery to remove that portion of his brain with the hope that it would end his seizures. 
 

 

Some of what you’re going to read or see will definitely make you wonder if Blake was a “problem child” or “troubled.” Nothing could be further from the truth.  He is so sweet. My son LOVES life and people. He has always been straightforward about his medical conditions. He has always accepted himself as he is and gone forward.  If there were time, you could watch all the videos he made before and after his surgery – some goofy, some simply honest.  He didn’t make any for a long time last year.  He is full of joy. It seems like he has always been sensitive to others in pain. He is generous to a fault. When he laughs, really laughs, it is both hilarious and life-affirming. I knew one of the risks of the surgery was that his personality might change, but we hoped not.

I cannot begin to describe my joy when the medical team told me that his surgery couldn’t have gone any better than it did. My son quickly responded to family and even finished a joke that had been started right before surgery. Seriously.  It was amazing!  And just 24-hours later practically hopped out of bed to walk even though he didn’t have feeling on his left side. Sunday, August 2nd we were released from All Children’s Hospital [ACH]. I would give anything to have that be how our story ends. 

We were back home for a few hours, then I drove him straight back to ACH. While it wasn’t yet clear what was happening to my son, I knew he needed to get back to the doctors fast. Before we would finally get home for good [just before Halloween] my beautiful son had multiple strokes, a complete psychiatric breakdown, and was on the verge of no return until his incredible medical team properly diagnosed him with a VERY rare autoimmune disease and initiated treatments. I had never heard of this disease and none of his doctors had ever treated it.

By August 7th doctors were still encouraging me to believe that the surgery might have been successful. But my son was in tremendous pain in Neuro ICU with no real answers and it was getting harder to be hopeful. By August 15th Blake’s Neurologist told me that his surgery was not successful. Going through with the brain surgery was the hardest decision of my entire life and I continue struggle with it every day.  By August 22nd, Blake was home again. I was giving him 14 meds 6x/daily at 6, 10, and 2 [AM and PM]. By August 24th, he was back at the ER and they discovered stroke spots. Blake lost ALL his emotional responsiveness. He didn’t feel pain – perhaps a blessing in disguise. He didn’t feel love or sadness. He still hasn’t cried since right before his surgery. He has regained some of his emotions and I pray that someday he’ll cry.

On August 26th, we made our first trip out to drop off paperwork for Hospital Homebound schooling and Blake was all smiles! Then he began hallucinating…

The disease is called Anti-NMDA Receptor Encephalitis [Anti-NMDARE]. It wasn’t a known disease until 2007. People, even physicians, still refer to it as “The Exorcist” disease. I will never know if my son was born with it, but it seems the most likely conclusion. The following details will be hard to fathom and it will overwhelm you. Please read it anyway…. hopefully it will give you a brief peak into what my life has become since my son had brain surgery last summer.  Before I tell you my experience, let me just share a few facts about this disease: 

Anti-NMDARE attacks the brain ruthlessly – potentially rendering a child incapacitated for several months or longer. Every aspect of a child’s development is affected: cognitive, behavioral, psychological, neurological, social, and physical.  Symptoms advance rapidly!  

• Seizures
• Abnormal, repetitive physical movements
• Behavioral changes [agitation, aggression, changes in sleep]
• Changes in levels of consciousness
• Psychological changes [hallucinations, paranoia, hearing voices]
• Cognitive changes [loss of memory, changes in or loss of speech]
• Tumors in females [usually non-malignant ovarian] 
• Autonomic instability – in other words, the basic bodily functions needed to survive become unstable [sweating, breathing, fever, blood pressure, heart rate, digestion, vision]
Nobody seems to know about this disease. I spent my sleepless hours researching it online. Whenever I have found somebody else’s story or a doctor’s perspective, Blake’s situation always seems so much more severe. I’d never want any parent to go through this, but I can’t help but feel that his situation is beyond the scope of what anybody will ever understand. I lived it and I don’t understand it, and I know Blake doesn’t.  It’s terrifying to have so many questions and no answers! I shared the information I found with Blake’s doctors. My son, who was always tiny, lost so much weight before the final diagnosis. Thankfully his doctors made contact with the right doctors, got him help quickly, and saved his life. 
 

But before they diagnosed him in mid-September things got unbelievably worse. My son went absolutely crazy! There’s no other way to say it. The disease put his brain on overdrive.  He hardly rested.  He talked gibberish and used strange voices.  My son used words that I didn’t even know he knew.  My son saw and heard things that weren’t there.  He was terrified of the dead rats in his belly button and I followed his directions and helped him remove every last one with an ice cube when he said that’s all that would work. My sweet son hit me – not once, but to the point where I was bruised and scared to death.  MY son has the most generous heart. He would help anybody he could. He would never have done that to me if he were well.  
 

Blake getting the ice water out of his belly button

 

Blake on his hallucinations [10/29/15]: https://www.facebook.com/chrystal.carpenter.7/videos/10205014938957503/

Video attachments: IMG_0248 [36 seconds] – Blake and the rats

           IMG_0288  [38 seconds] – psychiatric symptoms

           IMG_0307 [54 seconds] – psychiatric symptoms

 

My son didn’t know who I was. He tapped me on the shoulder and said, “Mam, do you know where my mom is?”  I don’t know how to tell you what that feels like, but if you’re a parent you’re already trying to imagine it.  I don’t know how to explain how hard it was to live through all of this when he didn’t even know me. I pray that his lack of memory about this time in his life is blessing. This disease stole him and tried to keep him, but he’s fighting back. He’s been fighting back right from the start. 

 

On September 13th I wrote this:

WHAT I HEAR FROM THE EXPERTS​…Be patient, It takes time, We don’t know, We are not sure, That shouldn’t have happened. WHAT THEY DO… Give pills to sleep, Pills to stay awake, Pills to improve memory, Pills to prevent seizures, Pills to control mood swings, Pills to dull the pain, Pills to lessen the hallucinations. HOW I FEEL….Like a stranger to the ONE person who is my life and guilty. WHAT HE HEARS….Scary voices, Funny voices, Some stranger [Me] saying NO, Stop, Wait, Over here over and over and over again. HOW HE FEELS… Scared, Frustrated, Sleepy, Anxious, Dizzy, Nauseous, Lost and I’m petrified of what else. WHAT HE DOES…Scream, Yell, Stare and talk to the voices in his head. WHAT I DO… Research, Research, Research, Make Calls, Beg, Cry, and of course PRAY!

Thankfully, even during the worst of it, MY son surfaced for brief moments. On one late night during another ER visit due his increasing violence and my inability to protect him or myself, Blake finally settled down for about 30 minutes. He’d been rigid, aggressive, and speaking foully for hours. When he rested in his seat, he looked over at me and asked, “Everything ok?” That’s MY son. I was exhausted and bruised all over. Of course, I told him everything was fine and that I loved him. An hour later he was revved up and we were back in the cycle of disease. Sometimes those fleeting moments were all I had to hold onto while we fought to make him well.

Doctors were on the verge of diagnosing him with Schizophrenia, when really the psychiatric meltdown was a symptom of a bigger issue. How many kids have been locked up because nobody knows about this disease??  In the Neuro ICU they diagnosed him with Aseptic Meningitis and Cerebral Salt Wasting. Blake suffered tremendous pain. We spent day after day in a silent, dark room because he couldn’t bear any light or noise. He wasn’t eating; he was allowed minimal fluids due to the salt wasting and he was constantly thirsty. My heart ached and he didn’t complain.

As a mom, all I want to do is make everything better and I can’t. I still jump every time I hear an unexpected sound or Blake doesn’t respond fast enough when I call his name or he looks at me funny or he tries to play a joke on me.  I am always tired. I am always on call. My 14 year old son has lost his independence. He is a toddler one minute, an 8yr old with hurt feelings ten minutes later, and a stubborn teenager after that….but with half of his brain gone I don’t even know who I’m talking to sometimes. I have to constantly monitor how I respond to him so he doesn’t see my pain, my frustration, my guilt.  

Nothing I have lost or given up hurts like Blake’s illness has hurt him or like losing him would, but I feel each loss. I will take every loss and I will give everything I have to get him better.  But it’s hard. It’s hard to see how much he’s lost.  He tries so hard to get things right and he has been so determined all along to get better. He seems to be reaching a point in his recovery where he can see some of what he’s lost. Still, I don’t know how much he knows or understands about all of this. I struggle to understand what it means to parent a child with a traumatic brain injury. I only know that I’ve read it can take two years for him to become stable, to develop a new sense of self.  We’re just shy of one year into this journey.  Recently he started back to rehab therapy. It’s with someone he worked with before, so he looks forward to those visits and works hard during them. 
My lost son. Anti-NMDARE takes everything. I was asked to not use this picture last year. I was told it was too real and people couldn’t handle it. 

 

I have so many concerns for him. He used to be able to take care of all his personal hygiene. Now I need to help him with various tasks, including in and out of the bathtub. Bath time is an incredibly strenuous and stressful event every night. If either of us ever slipped….I can’t even imagine. I don’t live in a place that has a handicap accessible bathroom. The property doesn’t even offer that and I can’t afford to pay for all those modifications in a rental unit, knowing I’d have to do it again when I moved. Blake needs a handicap accessible bathroom so that he can regain independence and be safe. Until I find that place, I need to get him a bathtub chair lift. 

The only sport Blake was ever able to participate in was Martial Arts and he loved it. He can’t do that anymore. I hope someday he’ll be able to. He can’t return to school until I don’t know when. He’s such a social kid. When he came to work with me, he’d take his phone and wander our little street to talk to all the employees he knew in the neighboring shops. Now he’s often uncomfortable going into a store or out to dinner. On the good days I do my best to take him to Target or dinner if that’s what he wants no matter how exhausted or rushed I feel. It means so much to see some of his old self come back. 

This clip is Blake at ACH in Spring 2015 for testing before the surgery. He was preparing for his Martial Arts class graduation, but in the end never got to participate. 

https://www.facebook.com/chrystal.carpenter.7/videos/4937797487087/  [31 seconds]

 

One of the many sad aspects of this has been seeing people not know how to talk to Blake [or me too sometimes] anymore – or to seem afraid of him.  It becomes evident very quickly when somebody is uncomfortable around my son and trying to get away. I just want him back. We have definitely lost some friends – maybe not permanently, but they’ve certainly kept their distance. This disease isn’t contagious. It’s just gut-wrenching and life changing. 

We had to give up our dogs. Blake could no longer tolerate the noise and chaos of pets, and he thought his favorite dog had been replaced with an evil version. And, frankly, I DID lose my son– the son I knew before his surgery. He talks and behaves differently now. He looks different – between teenage growth and having steroids required as part of his treatment – he’s gotten so big! I feel guilty saying I miss him because I’m SO grateful he’s still here. But it’s like getting to know him all over again and it’s hard not to compare the before and after. 
 

 

Blake with one of his dogs.

 

He has lost some of his mobility.  He desperately needs to regain the level of independence he had before the surgery, strokes and Anti-NMDARE diagnosis. He has to relearn so much.  Blakehad to relearn where his ankles were. I didn’t even know he didn’t know that until it came up in a random conversation.  These types of losses happen pretty much every day – most of the time right out of the blue. Every single day I wonder if this is the day he might relapse. I can’t go through this again. 

Blake at ACH relearning his colors [9/25/15]:

https://www.facebook.com/chrystal.carpenter.7/videos/10204863722897196/

 

In addition to providing his care 24/7, I am now his homeschool teacher. He should be a 7th grader, but since his cognitive decline he cannot comprehend or complete that work. Hospital Homebound appointed a teacher for him earlier this year, but she never seemed to understand that she needed to meet him where he was - NOT force him into second semester 7th grade work. We recently started reviewing 3rd grade materials. He is doing an awesome job, surprisingly me daily with what he can recall when given the opportunity. As importantly, he is excited about school and enjoying it. To see him happy about school and proud of his 98% and 100% scores is everything right now. I don’t care that it’s a 3rd grade book. I just care that he makes progress and feels good about it.  Eventually though, I realize I might need to hire a tutor for him. I still want him to go to college. 

My son’s long-term memory is phenomenal. He revisits old memories daily. His short-term memory has not yet recovered, but I very much hope that it improves. 

For sanity’s sake, my son and I have had to find a safe way to talk about the bad times. We refer to his illness as “when he was in cuckoo land.” I tell him stories about how he tried to “clock a doctor” and bite a nurse. He doesn’t remember doing it. He doesn’t remember most of the bad times. But he asks questions like, “When I was in cuckoo land did I…..?” He’s been asking questions – hundreds of them a day! – for months now about EVERYTHING! It’s hard because I do not have answers to all his questions. But I try and I research and read everything I can get my hands on. 

There’s so little information out there about this disease. It’s awful to go through this without any information or direction. All of my energy goes toward Blake’ recovery.  But for a while now I have felt that same level of passion and commitment about getting the word out about this disease. There must parents who need information, resources, and support. There must be children in institutions who have never been tested for such a rare autoimmune disease. That’s why I have begun to explore the steps required to create a foundation. I cannot rest until people know that Anti-NMDARE exists and that it can be treated. Nobody should ever have to go through this as blindly as I have had to.

The frequent battles with the insurance company has added a layer of stress to all of this that I find so frustrating and disheartening. They repeatedly denied services/treatments when they were the ONLY things that might save Blake’s life and help him recover. Each of his IVIG treatments were approx. $23k. That doesn’t include the Plasmapheresis treatment or the Rituximab [chemo] treatment or the months in the hospital or the surgery or the prescriptions or the multiple MRIs [some of those weren’t covered either]. Once the insurance approved all the Anti-NMDARE treatments I thought things would go more smoothly. But the insurance company continued to try to block treatment. 
                                        

                              Blake after an 8hr Plasmapheresis treatment.

 

 

 

 

On January 26th, 2016 my son had some sort of episode that I had not seen before. I rushed him to ACH, they kept him for observation, gave him new meds, and concluded that it was probably neuromuscular in nature. Turns out that this is a possible consequence of everything else he’s been through, and it could get worse. They don’t know. When it happened the first time I feared a stroke or worse and rushed him to the ER. Now I know it’s more likely to occur when he’s extremely tired and we do our best to avoid that.  Still it terrifies me every time because how will I know if it’s neuromuscular or a stroke or… if I don’t take him to the ER?

This video attachment is of a similar episode that occurred not too long after the first time: IMG_1248

Now, the most immediate medical step ahead of us is his eyesight. We have spent the last two months just trying to get someone on the phone to make an initial appointment. The challenges we have faced with medical care/insurance issues are absolutely ridiculous and unnecessary! I barely have the energy to do what I need to do; I do not have the energy to argue with people over the phone about whether or not he needs a doctor. I don’t know how people do this without help. I don’t know how I’m doing it sometimes, but I know I’m doing it for Blake and he is the reason I keep fighting. 

The good news is that Blake hasn’t had a seizure in 290 days! After all of this trauma, it looks like the brain surgery was successful. Blake and I agree we wouldn’t have gone forward with the brain surgery if we had it to do all over again. His smile and his laughter have returned; they are different than they used to be but they always bring me joy. He knows I’m mom and we get on each other’s nerves sometimes.  We don’t know what each day will bring.  We still have so far to go, but we will never stop fighting. 

Me driving Blake nuts during an IVIG treatment:

https://www.facebook.com/chrystal.carpenter.7/videos/10205043450190266/    [22 seconds]

Blake on his health in March 2016: 

https://www.facebook.com/blake.carpenter.547/videos/1519366711702332/  [21 seconds]