April 1, 2013 was just like another tax season day for our household, other than we were finally into April, which signifies the beginning of the end of my long 90+ hour weeks as a CPA. Our nine-month-old daughter, Rilynn, woke up just fine, had breakfast and was off to the day care provider as usual. She ate lunch, went down for a nap and woke up around 4:00 p.m. She had a snack and drank a bottle. At 4:45, our day care provider called Niki and said she was worried about Rilynn. Her eyes were glassy, she cried whenever she was touched and she was unable to bear any weight on her legs. Niki called me at work to let me know something was wrong with Rilynn and I told her I would meet her at home.
When Niki picked her up from daycare, Rilynn was limp. She screamed in pain as Niki tried to buckle her into her car seat. As soon as they got home and I saw Rilynn’s face, I knew something was very wrong. We immediately made the decision to take her to the Emergency Room. We called Rilynn’s primary care physician on the way to the hospital and he agreed that we were doing the right thing by taking her there. We entered the ER and sat in the waiting room for 20 minutes before we were taken back to be evaluated by a doctor. Rilynn was in complete misery. After finally being escorted into one of the rooms in the ER, we waited another 30 minutes before the attending doctor eventually came to our room to evaluate Rilynn.
Rilynn had previously suffered from numerous upper respiratory issues from the time she was three months old. She was constantly on antibiotics or steroids every couple of weeks trying to get her lungs to clear. When we went to the ER, we fully expected this to be a worst-case scenario for the respiratory problems she had been having. We explained her history to the doctor and he ordered a chest x-ray to look at her lungs. The x-rays came back clear. By that time, Rilynn had become extremely lethargic. The only way she was comfortable was if she was being held by Niki or me. She cried every time she was moved. Her cries were becoming softer – she was barely vocal at that point. The doctor looked her over and said that he didn’t know what her issues were, that she just seemed “fussy”. He immediately wanted to discharge us. We knew something was wrong, and something bad by the way she was acting. She was weak and by this time she was no longer moving her arms. We expressed our concerns to the doctor about being discharged and asked what other tests we could run to try and determine what was going on. He reluctantly agreed to run blood and urine tests.
The results from the blood and urine tests came back normal and we begged the doctor to do more. He wanted again to discharge us, stating that we were probably being over reactive parents. We again explained that something was very wrong with Rilynn. She was normally so active and since the onset of whatever this was she had, she was motionless. I remember asking him if maybe she broke an arm, the way she was holding it. He twisted and pressured her arm, and because Rilynn showed no immediate reaction, he ruled broken bones out of the equation. He said she would be fussier if she had broken a bone. We kept pushing for more tests and he finally agreed to do a CT scan to check for head trauma. We were furious when we found out that the only reason he agreed to do the CT scan was due to a phone call he had placed to Rilynn’s primary care physician, Dr. James Wigington. The ER doctor had needed Dr. Wigington’s reassurance that Rilynn was normally a “very active” baby. Why he wouldn’t trust our statement, as her parents that she was not acting like herself still infuriates us. The CT scan, of course, came back clear. The doctor told us the next step would be a spinal tap, but he did not see any reason to perform one. He discharged us with the instructions to give her Tylenol for pain and to take her to see Dr. Wigington in the morning if she still wasn’t better. Rilynn was motionless at this point but we had no choice but to take her home and see how she did through the night.
As we were leaving the hospital, I called a good family friend who is also a nurse at the hospital. She gave us the best advice we had received that day. She explained that, because we are in a rural area, our hospital is equipped to “stabilize and transport” rather than to “treat and release”. She strongly encouraged us to keep a close eye on Rilynn and that if she stopped nursing at any point, to get in the car and drive her to Colorado Springs thereby circumventing our local hospital. We took Rilynn home and put her to bed. She slept in the clothes she had been wearing all day – every time we touched or moved her she whimpered in pain. Niki slept on the floor next to her crib that night as I went to bed, hopefully getting up the next morning to do more tax returns. At this point, our naivety was at its peak. Around 4:00 a.m., Niki told me that we had to get to the hospital. Rilynn had woken up and had tried to nurse but was unable to lift her head to do so. Her eyes were open, but she was completely unresponsive. She was not moving her body at all.
The closest Children’s Hospital was two hours away in Colorado Springs. We called ahead to let them know we were coming, loaded up and rushed to the ER. This finally started the diagnosis process. We met some of the most incredibly compassionate care providers, especially in the ER which was such a welcome relief from our experience the night before. We were rushed in, and the doctor was in our room in minutes. He went through a gamut of tests including a full body X-Ray, more blood work and a spinal tap. Each test kept coming back clear. I remember Niki asking the doctor at one point if he was going to discharge us if the tests kept showing up clear. The doctor looked at her like, “you’re kidding me right?” He called the on-call pediatric doctor, Dr. Elisabeth Martin, who came down and examined Rilynn. We knew Rilynn wasn’t moving but the fact that she was paralyzed never crossed our mind. The first thing Dr. Martin did while examining Rilynn was to try and get her to get her to sit up. She slumped over like a limp noodle. Her cries were still a whimper, but her face showed that they should be very loud screams. After examining her, Dr. Martin stated that she felt Rilynn had one of two conditions, Guillain-Barre syndrome or transverse myelitis. An MRI on her spinal column would be needed to determine her diagnosis. Her intuition was that Rilynn had transverse myelitis or TM.
We had never heard of either of these diseases, and I soon took to my smart phone to read about TM. This is when reality began to set in. The information that came up was overwhelming and none of it showed a good, long-term prognosis. No one was able to answer questions for us regarding baselines or what to expect from this condition. We were fully admitted to the hospital and waited to go for the MRI. It took until 6:00 that evening to get Rilynn in for her MRI and very shortly after a neurologist confirmed the TM diagnosis. Rilynn had significant swelling at the “C2” level, explaining her complete paralysis. The first course of action was to begin IV steroids. She was given her first dose at 10:00 p.m., approximately 30 hours after onset. We both wish we had made the decision to head to Colorado Springs the night we were discharged from the Salida Hospital, rather than waiting 6 hours at home before we made the decision to go. We were told that we were very lucky the swelling didn’t continue up her spine, or she may not have been able to breathe during that time and this could have been fatal.
We stayed several long days and nights at the hospital without Rilynn showing any signs of movement. We were told to stay strong and “hope” that the steroids were going to work. Nights were the hardest. The hospital only allowed one person to stay overnight with Rilynn in her room. Niki would stay since Rilynn was still nursing and I was forced to head to a nearby hotel. It was so hard to leave them, but even harder on Niki. Rilynn’s skin was so sensitive to touch during this time and any movement caused her a huge amount of pain. During the day, it took two of us to change her diaper – it was the only way to do it quickly and with minimal movement. At night, Niki was left to nurse her and change her on her own, all while trying to keep Rilynn as still as possible so as not to cause her any pain. Getting her out of bed was so complicated –we had to move her very carefully so that her IV would not become dislodged. She had heart and oxygen monitors attached as well as oxygen in her nose. The room was not set-up for anyone to stay other than the patient and I specifically remember having to put a padded chair at the end of the small couch so that Niki’s feet wouldn’t hang over the edge as she was trying to sleep.
On the third day in the hospital without any signs of movement from Rilynn, her big sister Nola finally got to visit. All of our parents had shown up to support Rilynn and us during this time. We have video of Nola walking into the room and Rilynn smiling so big and the most amazing thing happened. Rilynn got so excited she shrugged her shoulders. This was her first movement in almost four days. She did it again when Nola got closer with such a big smile, everyone in the room cried. I became obsessed with learning about TM, its prognosis and treatments. On the fourth day of the five day steroid treatment, Rilynn was given an Intravenous Immunoglobulin (IVIG) treatment, which has been shown to help patients with TM. The effects take anywhere from two days to two weeks to appear and the neurologist felt this was the next best option for Rilynn to try and help with her recovery.
We were set for discharge on Tuesday, 8 days after being admitted. Rilynn was showing minimal improvement. The sensitivity of her skin had started to diminish and she was able to handle a couple of physical and occupational therapy sessions. We requested a meeting with Dr. Martin and the neurologist prior to discharge. We explained to them our concerns – normally when you are discharged from the hospital you leave with a “healthy” child. I had done research on the Internet and had read some positive articles about the use of Plasmapharesis (PLEX) therapy on people with TM. A PLEX treatment is basically a blood exchange that takes place in numerous sessions over several days. Approximately 60% of the patient’s blood is removed during each of these sessions and the plasma in the blood is separated. The cleaned blood is then put back in the body and the plasma is replaced with a man-made version. Our neurologist felt that Rilynn was too young to explore this option and immediately ruled it out. We also inquired about moving her to the Denver Children’s Hospital to get her in the inpatient rehabilitation program. Again, that was ruled out by our doctors as they felt Rilynn would not be able to withstand three one hour long therapy sessions per day, which is what would be “required” of her to be in the inpatient program. We were discharged with a prescription for steroids, a neurological pain medicine and the advice to schedule 4 therapy sessions per week.
We came home and tried to adapt to our new life with a quadriplegic baby, not knowing if she would ever recover further than shrugging her shoulders. One of our family’s best friends is a physical therapist and she came to our home daily to work with Rilynn and help us with the therapy process. We also arranged for a local acupuncturist to come to our house and work on Rilynn. After several days of this, Rilynn picked up her arms and moved them above her head during an acupuncture session. Niki’s mom was recording it when it happened and you can hear us all crying and laughing with excitement. Her little hands were fisted, and we would work every day to stretch her fingers out. This was all taking place during the last week of tax season and I had no choice but to go back to work during the day. Thankfully, Niki had sick time saved up and was able to stay home with Rilynn. We also had the help of numerous family members to assist with Nola and getting her to school. At work I could not focus, and was an absolute mess.
I researched and obsessed about TM. I couldn’t find many stories of full recoveries or even close to full recoveries and was at my wits end when I finally joined the Transverse Myelitis Association (SRNA). I had been to their site many times reading the educational materials, but had not yet joined the association. . We kept searching for the “silver-lining” approach to Rilynn’s diagnosis and weren’t finding it, especially for infants. I went through the process of joining SRNA and this turned out to change our lives forever. Literally within minutes of joining, Sandy Siegel, the president and founder of SRNA, emailed me to call him as soon as possible. I immediately called and we discussed my daughter’s condition. He mentioned PLEX, and I told him that we were told by our doctors that wasn’t an option for infants. He explained that though he is not a doctor, he believed it could be done and may be very beneficial. Sandy took it upon himself to contact Dr. Ben Greenberg, a top neurologist in the study of children with TM. Dr. Greenberg immediately requested our approval to allow Rilynn’s medical records to be released to him for review. Dr. Greenberg then contacted Dr. Teri Schreiner, the head neurologist at Children’s Hospital in Denver to see if her team would be willing to perform the PLEX treatments on Rilynn. Dr. Schreiner called us at home on the Saturday after we were discharged from Colorado Springs. She told us that she was willing to do the PLEX treatment on Rilynn, but still needed to discuss it with her team on Monday morning. She would be in touch with us on Monday to let us know what her team’s decision was, but to plan on heading to the hospital that next week to begin the treatments. Dr. Schreiner called us on Monday to let us know it was a go and we were scheduled to be admitted that Wednesday. We finally felt like we were headed in the right direction. On April 17, 2013, we walked Rilynn into the Intensive Care Unit of Children’s Hospital. I remember the receptionist telling us how strange it was to be admitting someone who was being brought in by his or her parents, rather than through the ER. The PLEX treatment would be administered through the use of two IV lines that had to be inserted through her inner thigh. Rilynn had to be sedated to insert the lines. They told us it would take about 30-45 minutes, but it ended up taking a little over an hour and a half. The wait was excruciating, but thankfully worth it. The lines were in and we were scheduled to begin her first PLEX treatment that afternoon. We had to stay one night in the ICU before being transferred to a regular room.
Rilynn completed five PLEX treatments over a seven-day period. They were painless for her; she slept or watched movies through most of them. We immediately began discussions with the rehabilitation doctors about Rilynn’s admittance to their inpatient rehab program. The information we had been given in Colorado Springs about her needing to be able to withstand three one hour long sessions per day was not correct and the rehab doctors were ready for her to begin the program. We were ecstatic as we met the PT and OT personnel, especially when we learned that they had worked with TM patients before. During Rilynn’s treatment she was beginning to show great signs of improvement. Her right arm needed an IV, therefore it was bandaged and pretty heavy, but her left was free and she would swing it around all the time. I also have footage of her giving me knuckles when she finally opened her hand for the first time and moved her fingers.
After those seven days, all of the IV’s and monitoring cords were finally removed from Rilynn and we were transferred over to the rehab side of the hospital. This in itself was very liberating as we could finally get her out of the room. We had therapy sessions three times per day, at roughly an hour a session. Rilynn was very motivated, and worked very hard. The PT’s and OT’s were amazing. They taught us how to work with her, and the days were very busy between naps, eating, therapy, and play sessions. During this time she continued to improve, from arm and hand movements, to attempting to roll, to rolling from her belly to her back. We have plenty of pictures and video of this progression. I could literally write ten more pages on her recovery process.
We were released to go home on May 17th, 2013 with a specific plan for PT and OT for the unforeseeable future. We feel incredibly lucky at how well our insurance company has worked with us. They have deferred to the doctor’s orders when it comes to therapy sessions and she has not been limited to a certain number of sessions per year. We have been extremely lucky that Rilynn has shown no bowel or urinary track issues, though being an infant at the time she had no control over movements anyway. She has never had a urinary tract infection, or any bowel issues. Just last week, at less than two years old, she sat on the potty and went!!!!! And she has done it consistently, telling us when she has to go. We are very hopeful that this may not be an issue going forward.
She has slowly regained what seems to be 100% of her hands, arms, shoulders, neck, and core muscles, though the core certainly needs to get stronger. During our stay in rehab, her legs began to have movements, though spastic at first. She would react to cold water when in a hot tub. She began to “army” crawl about a month after our release from the hospital and it took several months for her to be able to get onto all fours. One day in the tub, she finally began to crawl. It was labored at first, but today she crawls all over the place and is happy. She can feel, what it seems, 100% of her body by touch. She has no permanent paralysis, and she is starting to walk with help!!!! Her little legs sometimes cross when she does, but more often than not she gets it right. She is beginning to cruise at home, using the furniture for assistance. We are currently working on her transitions from sit to stand to cruise to walk. We will walk out of the playroom and come back to see her standing. Though she is slow and fatigues pretty quickly, we, along with her doctors and therapists, are very optimistic that Rilynn will walk one day.
There is so much more we could write about Rilynn’s story but to write it all would turn this into a novel, not a blog. We are constantly reminded that the rehabilitation process after TM is a marathon not a race. We try to be careful not to let our highs get too high or our lows get too low, which is definitely a lot easier said than done. We were very blessed during our time in the hospital as both Niki and I are employed by incredible organizations and people. They understood our situation and said just be there for our daughter. We spent 41 nights in the hospital without worrying about our jobs or being paid, allowing us to focus on Rilynn’s recovery. Children’s Hospital in Denver encouraged family to stay with the patient as it helps so much with the recovery process. I’d sleep on the floor and finally got smart enough to bring up a cot, and Niki would take the couch. Nola made the three hour trip between Salida and Denver every weekend and was able to stay in the room with us during her visits. Those were the best days – both girls together again brought so much love to our world. Niki and I worked as a team helping Rilynn and taking breaks when we needed them. It’s interesting to look back on and reflect on that time now. Niki and I both had our bad days, but thankfully, never at the same time. We were each other’s strongest support team. It was awful, painful, inspirational, and amazing every day. Rilynn was so positive and worked so hard. Her motivation is the reason we are where we are today.
I remember reading a story and it started that their child has now had TM longer than she didn’t have it. Rilynn is now the same, turning two years old on June 13, 2014. Just last week, while taking a bath with her sissy, she began to kick her legs. She now kicks them every time we ask her to. She is asking to walk more and more, and has received some specialized ankle orthotics that fit on her feet to help strengthen her stance, allowing her core to strengthen. We are down from four to three therapy sessions a week. We’ve coordinated all of her sessions over our lunch hours. I pick Rilynn up and take her to her session. Niki meets me at therapy and takes Rilynn home, which allows us both to be at every therapy session without missing any extra work. We have been fortunate to meet the most amazing people through this experience. We have been fortunate enough to have the ability to hire in-home care providers for Rilynn and they have grown to love our daughter as much as we do. We have so many people rooting for Rilynn’s success. We cannot thank them enough as their support has helped so much in Rilynn’s progress. We worry that Rilynn may have another attack and that worry is always in the back of our minds. But that worry and this diagnosis have also taught us the importance of living in the moment and being grateful for every day. Some days, her progress seems to slow down and we start to panic. But those slow-downs are always followed by some break-through in her progress. The more cognitive she becomes, the more she is finding out she can do. We are very optimistic for the future and will not allow this disease to defeat our family or us. When we look at life, we feel incredibly happy and incredibly lucky.
If your child is diagnosed with TM, here are a couple points and why SRNA is SO important:
- Early diagnosis is incredibly important, therefore the more awareness of TM the better.
- FIGHT for your child. Don’t allow doctors to dictate everything. You know your kids better than anyone else, therefore don’t allow a doctor to think for you. If something doesn’t seem right, express that. Fight for answers.
- Love, persistence, and harmony go a very long way. We did our best to never react negatively around Rilynn. If you need some time, excuse yourself, break down, recompose and come back.
- You are in for the long haul, so take it day by day. Remember that this is a marathon, not a race.
You are stronger than you give yourself credit for. It may feel like your world is crashing down but you can handle this. You have an amazing child who is about to show you how strong they are. They got that strength from you.
Parents that have children with TM, please feel free to contact us through SRNA, as we would like to help in any way we can. We owe a lot of our daughter’s progress to Sandyand this great organization. With warm hearts and lots of Love,
~ Danny J. Stotler