Anyone who says that real friends can't be made on social media has never made a friend on social media. I met a tons of wonderful women and mothers over 6 years ago on a site called Ivillage. Sadly Ivillage is gone now, but back then was very much active. We were both expecting babies in September 2009 that was the only thing we had in common at the time. Over the years and through Ivillage disappearing we all moved to facebook and kept up our friendships. We laugh together, cry together, and rejoice together. We are all very good friends despite the fact we are spread out all over the world.
In September on of those mothers, Lauren began to travel down the hardest road any mother can imagine. Her 6 year old Steven began to have some problems. They thought at first he was having seizures, but it was much, much worse. This is where I am going to copy and paste his story rather than typing the whole thing out and chancing messing it up.
On September 17th, 2014, Steven's mother Lauren dropped him off at school with his brother Joshua. She walked them to the front door and said goodbye. An hour later she would get a call from the staff that they had called EMS because they thought Steven had an absent seizure. The ER started him on Keppra, a seizure medicine and sent him home. Even though he seemed to be talking quieter and sleeping more, he seemed more like himself on Wednesday so when he requested to go to school on Thursday, Lauren allowed him to. He did fine and they figured the ordeal was over; little did they know that it was just beginning. Friday morning Steven was rushed to Brookdale ER from school again. Steven’s doctor wanted him transferred to Brooklyn hospital, so Lauren had to rush around getting things to keep him comfortable, like clothes and food. She had to tend to her other two children and make sure they were cared for while she was in the hospital with Steven.
On the way to the hospital Steven began to deteriorate. He was having major issues with his speech and he was having issues grasping things. Based on the new symptoms, the ER did a CT scan and admitted him for the evening. Lauren was devastated when over the next 48 hours he declined rapidly. He lost his ability to walk, talk, and eat. Different medicines would work for short periods of time, but he was not getting better. MRIs and EEGs were done, but still no one had an idea what was going on. Everything was pointing to an issue in the brain, but no problems could be seen there. The doctors were baffled as usually they would have had some kind of answers, but they had nothing.
It was finally decided to move him to Maimonides Medical because they had better access to continuous EEG monitoring even on weekends. They could also do other tests that weren’t available at Brooklyn Medical on weekends. They hated leaving the loving staff at Brooklyn, but did what was best for Steven. Steven handled the transfer well and was quickly hooked up to the EEG monitors. The seizure specialist, who was watching a video on the other side of the hospital, determined that he was in fact not having seizures at all. Lauren was baffled; what was wrong with her child? A few hours later the attending doctor came in to talk with her after Steven had another episode. It was determined he did not have a seizure disorder at all. It’s not unheard of for the body to go into a seizure when in distress and this was his body’s way of reacting to what was attacking his system. They believed he had a severe and rapidly manifesting metabolic or autoimmune disorder. Ruling out the seizure disorder was at least something after a week of no answers. All Lauren wanted was to have her happy 6 year old back.
A new series of blood work was done and a painful spinal tap in hopes of figuring out the exact condition causing Steven to be in such a horrible state. The tests were sent to the Mayo clinic to see if the doctors were right on their thought that he had a rare condition known as NMDA receptor encephalitis. It was even rarer for a male child under 10 to get it without something such as a tumor causing it. Treatment was started without the results that could take 2-4 weeks. Thankfully the doctors started calling and the tests came back quickly and were positive for NMDA receptor encephalitis.As Steven's advocate, Lauren has spent an obscene amount of time researching not just this illness, but case studies of all demographics, specifically cases closest to Steven, and Lauren felt fortunate that the doctors agreed when she expressed that she felt he needed more aggressive treatment based on how his case has progressed and what helped patients with similar cases.
Initially, his next treatment would have been plasmaphoresis. For those that are not familiar with it, it is essentially dialysis for the plasma. He would been treated daily through a central catheter in his thigh for 5 days while under sedation in the PICU to protect his from trying to remove the catheter. The doctors and Lauren decided to hold off on that until later in because he just had the Immunoglobulin treatment, and IVIg can last for up to a month in the body. The plasmaphoresis would wash out the bad antibodies, but it would wash out the IVIg as well. So, it was decided that this weekend, he will be placed on intravenous Ruxitan; for those that are unfamiliar with it, Ruxitan is a chemotherapy drug. He will receive this for several hours once a week for four weeks, then once a month for several months. Plasmaphoresis may also be introduced sometime later next month if they feel it will help speed up the removal of the antibodies, but they will cross that bridge when they get there. Once there is no longer any sign of the encephalitis present in his lab work, he will be transferred to a long term in-patient facility to continue his treatment and start the various therapies that he will need to regain his functions.
How is Steven himself? There is no real improvement from when he seemed to bottom out from his rapid deterioration. He still can not talk or walk. He cannot eat, so he is fed by an NG tube and in spite of continuous feeds, he's visibly losing weight. He has to use diapers because he cannot use the bathroom. The biggest nightmare from the encephalitis is the movement disorder associated with it. He hardly sleeps even though he's tired. He has physically exhausting bouts of movement that he has no awareness of and because he has no control, he is incredibly physical strong. It often takes 2-5 people to help when he has an episode and they can last for hours. He is now in a youth bed with high walls - essentially a big crib. We reinforced the sides with two layers of bumpers (yes, just like the bumpers you put in a baby crib, but bigger and made of foam) and layers of sheets and blankets as barriers. He has to have someone watching him at all times because the movement disorder causes he to try to fly out of the bed, hit his head against the sides, stick his limbs through the rails, etc. As a result, he has many cuts and bruises on himself. He is on medication to try to keep him calm. A LOT of medication. It just doesn't work for very long. For those that are curious, twice a day, he takes Phenobarbital, Seroquil, and Clonodine. When he has an episode where he is going for more than 30 minutes or especially agitated, he has an as-needed dose of Seroquil and as-needed doses of Ativan. And they still don't help as much as even the doctors thought they would. So they make adjustments daily and hopefully will find one that helps him consistently.
It's now been 4 months since he became sick and now insurance wants his mother to give up on him and put him in a nursing home. This is something she is not willing to do. They are making things as difficult as possible for Lauren and Steven which makes his mother fight harder. Please take a minute to like their facebook page and spread the word about this brave little boy and his loyal, loving mama. https://www.facebook.com/stevenssteps. The more his story gets out there the harder it will be for insurance or anyone else to try to hinder his recovery.
Most of all pray! Pray for Lauren who stays by her son's side even as she has to force herself to stay awake. Pray for Steven and his body to fight and recover!