This is Dylan’s Long Covid story, shared by his mother, Stacy Smith.
The perfect storm led to my son losing his life for nearly three years. Our son was an 11-year-old boy who loved playing soccer and basketball, had lots of friends, straight A’s in school, and except for seasonal allergies was completely healthy.
In January of 2022 that all changed when I caught Covid for the first time, five days later so did my son. We both had mild symptoms for about two weeks. He suffered with body aches, congestion, cough, headache, and a low grade fever. After two weeks he was completely fine and returned back to school, caught up on all of his missed work, and even finished out the basketball season.
On February 17, 2022, just four days after his 12th birthday, his long covid symptoms started (we didn’t know that at the time) with congestion, runny nose, and a horrible cough. He missed a few days of school and when he wasn’t showing any signs of getting better I took him to the doctor for the first time on 2/22/22. That was the first of many trips over the next few months. Doctors at that time were not familiar with Long Covid and he was diagnosed with a sinus infection, walking pneumonia, and habit cough. After many rounds of blood tests that all came back clear.
My son’s PCP started sending us to specialists. From February to June my son saw an infectious disease doctor, a cardiologist, a pulmonary doctor, had three ER visits, and a functional medicine doctor. Still no answers to why our son was getting more ill every day.
Finally, we thought there was hope when a Long Covid clinic called us. We had been on the waiting list for months hoping for a call.
June 16, 2022, we drove two hours to the clinic and saw a team for about eight doctors ranging from a nutritionist to a neurologist. By the time we made it to the clinic, our son had severe nerve pain, could no longer walk, migraines, brain fog, cough, fatigue, and was very weak. He also could no longer attend school. We were so desperate to find some type of help for our son.
After a full eight hours at the Long Covid clinic, we left there with a prescription of Gabapentin and at-home PT. They also recommended putting him on their waiting list for an inpatient program where he would have stayed at the hospital for 6-8 weeks alone. He would not have been able to see us and we could only talk to him only 20 minutes a day on the phone. They said this was to focus completely on therapy and getting him well. We said absolutely NOT! Our son couldn’t walk and couldn’t take care of himself. We were not going to leave him with complete strangers that still couldn’t tell me what our son was suffering from. Needless to say we were looked down upon for not agreeing to this program.
By July of 2022, the Long Covid team of doctors were just increasing his Gabapentin (that was not helping). He also continued with PT at home. Our son was bedridden and had developed slurred speech from side effects from the high dose of medication. I was in constant contact with his doctors and they just kept pushing the inpatient program.
By the end of July, one of the Long Covid doctors (a neurologist) referred Dylan to an inpatient rehabilitation program at another hospital that allowed a parent to stay with their child. We agreed to this program and on August 9th of 2022 we headed to the rehabilitation center.
We had such high hopes and so did Dylan. I was the one staying with Dylan at the rehabilitation center. When we arrived, our son was in a wheelchair because of how weak he had become and was unable to walk. His days were filled with PT, OT, speech, and CBT.
Within 24 hours, Dylan could no longer hold his body upright, sit up or control any movement. We arrived on a Tuesday evening and by Friday morning after seeing an OT therapist for 10 minutes, he was diagnosed with FND (functional neurological disorder). This was a therapist who had taken a weekend workshop on FND. She then spoke to the head doctor and he agreed that was the final diagnosis. Needless to say I did not agree!
Long story short, we were at the rehabilitation center for four weeks. Within that time, Dylan had lost the ability to move, speak and swallow. It was two weeks of not being able to swallow, the doctor would not allow a feeding tube because he was treating it as a behavior issue. I even had to fight with them to keep his food in his room for me to try feeding him. Our hopes were to take home our son feeling better but instead our son was basically a vegetable. We returned home on September 8th, 2022.
Dylan’s body was starting to shut down! Not long after returning home Dylan had to stay in a children’s hospital for 10 days to get a NG feeding tube because he still couldn’t eat or drink. While at the children’s hospital he started having short spells that looked like seizures. Later to find out the short spells were non-epileptic seizures caused from pain and trauma not only from Long Covid but from the abuse he endured at the rehabilitation children’s hospital. The only positives were that our son was finally getting the nutrition he needed and he began to speak to my husband and I. The joy of hearing his voice after almost two months was unbelievable.
After the non-epileptic seizures began, Dylan began to isolate himself from all family and friends except for his father and I. His psychologist said he was doing that because he didn’t want others to see what he had become after getting sick, it was a form of protecting himself.
Each day our son was just getting worse and there was no one that knew how to help him. All the doctors wanted to do was give him antidepressants. By this point I had stopped teaching to give full-time care to our son. All I did besides taking care of my son was research and read! I had to find someone that could help him. But that never happened!
It is now May of 2023. Our 13 year old son is completely bedridden, had a feeding tube, full-body nerve pain, blurred and double vision, ringing in his ears, migraines, has 50-100 non-epileptic seizures a day, dissociates, has violent rages, cannot feel the urge to urinate, anxiety, depression, and PTSD from all of the pain and trauma.
As Dylan said before we were just surviving not living! I just knew that something bad was going to happen to either Dylan or I because of all of his non-epileptic seizures, violent rages, and dissociating. Daily, I had to hold him down from attacking me and destroying the room. While he dissociated, he would black out. I suffered from two concussions, several black eyes from objects being thrown, we both had scratches, and bruises.
This life we were living was hell and I couldn’t save him no matter how hard I tried. The look in my son’s eyes after coming out of a non-epileptic seizure and after dissociating was a look of horror. He was so scared and ashamed of what he had done but couldn’t control or stop the spells.
Throughout all of his illness I was in weekly contact with his psychologist who guided me through all of Dylan’s emotional trauma. Remember as I stated above Dylan’s anxiety and PTSD prevented him from seeing or talking to anyone other than his father and I. Every week Dylan’s wonderful psychologist talked and explained to me what was happening to our son. Honestly, at times I don’t think I would have survived if it hadn’t been for his knowledge, kindness, and compassion he had for Dylan and our family. I also met every three months with his GI doctor, psychiatrist, and PCP for check-ins.
Finally, after a year and a half, I had convinced Dylan’s psychiatrist (I sent him all of the research I had found on LDN) to prescribe him Low Dose Naltrexone (LDN). I had read many articles and researched how LDN was helping LC patients with pain, anxiety, PTSD, and dissociation. The last thing I wanted to do was to try another medication because of how Dylan had responded to all of the others but we had no other choice. He started LDN at a very low dose .50 mg and every two weeks I increased it by .25 mg with the hope of it helping in some way. Within 4 weeks Dylan went from having 50-100 non-epileptic seizures a day to only having one when he was picked up or carried to bed or the bathroom due to the pain. Although our son was still so ill, with the non-epileptic seizures and dissociating stopping we were able to breathe a little. We were hoping for more improvements but sadly that didn’t happen.
When the new school year of 2023 started Dylan had missed all of 7th grade and now was missing the start of his 8th grade year. He missed his friends, playing sports, reading, playing games, field trips, school dances, and just laughing and being a kid. It broke our hearts as parents to see our sweet little boy missing out on all of these special moments that he could never get back. He missed the last few years of his precious childhood. Our days were spent in one room upstairs in our home. Because of Dylan’s anxiety and PTSD he had not left the house since November of 2022. He wouldn’t even go downstairs.
Daily, we felt like we were losing our son and felt helpless. No one could help heal our son because Long Covid was such a new diagnosis.
Since I had stayed home for Dylan’s full time care for the school year 2022-23 my husband and I decided that I needed to return part time to teaching in 2023. We were lucky my husband was able to work from home two days a week. We were blessed that the school where I worked and Dylan attended treated us like family. They had me come two days a week to be the STREAM teacher for grades 1-5. This allowed Dylan to depend on someone else besides me and allowed Dylan and his father to get closer again. I also needed socialization!
In February of 2024, I caught Covid for the second time and of course gave it to Dylan. With every illness from a cold to the flu worsened Dylan’s symptoms. I was terrified what getting Covid again would do to our sweet boy and I was right to be terrified. His symptoms worsened which I couldn’t even imagine that could have been possible. He was completely bedridden, could not move at all, developed severe nausea, vomiting, and stomach pain. He couldn’t even focus on watching tv that was even too painful for him. We were totally lost at this point and had no clue how to help our son. Covid wasn’t going anywhere it was here to stay. I kept asking my husband how he will live and survive like this.
Finally, on March 5th of 2024, I received a text from my long-term sub (yes, my school had been holding my position for two years) not a doctor, not from researching, my long-term sub gave us the information we needed. God had a plan and it was starting!
She told me of a clinic in Fayetteville, Arkansas, that was starting to help Long Covid patients. Her sister had known someone with some of the same symptoms as Dylan that had just graduated from the clinic completely in remission. But the only problem was health insurance wouldn’t pay for it. At that point my heart sank and I thought how could we even think about paying for this. Even with all of my hesitation my husband and I said we had to try, we had to save our son’s life. The next day I filled out the online form and by that afternoon someone had contacted me. I’m not going to lie, I actually avoided the call because I thought this had to be too good to be true and I didn’t want to disappoint our son again or give him false hope. Finally, the clinic reached my husband and he was the first to talk to them. He was very excited when he was telling me about what they could do to help Dylan get his life back. My husband said you have to talk to them tomorrow. The next day I spoke to the most amazing lady, she was so kind, soft spoken, she listened, and she believed me. She said that they could help and told me about several Long Covid cases they had helped since 2023. She also put me in contact with another Spero mom already at the clinic on week 8 with her son who was the same age as Dylan, got sick at the same time, and had most of the same symptoms as Dylan. When we talked we cried, we laughed, and we shared our stories. I thought to myself if the clinic is anything like the young lady I spoke to, it would be amazing. We finally had hope!
For almost three years we had been searching for help to heal our son with no answers. For the next 12 weeks the Spero mom and I kept in touch. She told me weekly about her son’s wins and challenges, about what the therapies would cost per week, and described how she felt as a mother seeing her son go through this journey. She was a true angel to me!
After multiple conversations and even a Zoom call with Dr. K, the lead doctor we decided to schedule a start date for Dylan, June 26, 2024.
We had three months to raise enough money for the treatment and our relocation to Arkansas. Between my husband and I we contacted our local newspaper, radio, and tv stations. We brought awareness to Long Covid, our son’s story, and the fact that health insurance would not cover the medical care our son needed to get well. But what feared us the most was how in the world would we tell Dylan what our plan was. How would we tell him with his anxiety, depression, and PTSD that we were taking him to another medical facility to try to heal him, that we were leaving our home he hadn’t left in 18 months, that we were staying in Arkansas for who knows how long. We knew that he would refuse to go and he would be mad at us for planning this and even thinking the clinic could help. Needless to say my anxiety was bad but my husband just had the attitude that we were going to do this and that it would be ok!
After speaking to Dylan’s psychologist he agreed that if we told him right away and gave him three months to worry and fear the trip that it would not be healthy for Dylan. We decided to tell him a week before leaving for Arkansas. But Dylan’s psychologist did say that we needed to get him out of the house for a short weekend trip before our journey to Arkansas. My husband and I had discussed my ways of traveling to Arkansas and where to stay while we relocated. Dylan was not able to sit up in a car and definitely couldn’t fly in a plane so we decided to drive an RV to Arkansas. Dylan would be able to lay in the bed for the trip and we would also be able to bring our three dogs on the journey. Honestly staying in an RV also saved us on living expenses as well.
Dylan’s first trip out of the house in 18 months was challenging to say the least! The only thing leading up to our weekend getaway we told Dylan was that we had purchased a RV for camping. As a family we always loved camping so he was actually happy! Two days before leaving in May of 2024 for our getaway we told Dylan that we were going to Ocean City camping in our new RV. He screamed NOOOOOO and that he wasn’t going and that we couldn’t make him. We knew this was the reaction that he would have and we knew after telling him the details of our trip that we just needed to leave him alone to process what was happening.
The plan was to leave on Tuesday, May 21, 2024, and only stay until Thursday. On the day we were leaving Dylan kept having non-epileptic seizures and dissociating; he was so terrified. His therapist said to talk to Dylan prior about making a plan and doing anything that would make him more comfortable/safe when leaving the house for the first time. Dylan said since he hadn’t been downstairs in so long and there were bad memories from being down there after returning from the children’s hospital and almost dying. Dylan said that he wanted to be blindfolded to be carried downstairs. The whole time my husband was carrying him to the RV he was yelling no, and dissociating/blacking out. Finally, we were on our way and it was a rough start but finally Dylan settled down and after the hour drive to Ocean City with the dogs in his lap I think I saw a smile. We were only supposed to stay for two nights but Dylan first said let’s stay until Friday so we did, then he said let’s stay until Monday so we did! Dylan stayed in the RV and stayed in bed but just getting out of the house and seeing new things, people, smells, and sounds out of his window was so amazing for him. He had overcome a huge fear of leaving the bedroom and the house he had been in for 18 months. We knew we were on the right track.
Now the countdown was on, we had less than one month before leaving for Arkansas. Three days before leaving we told Dylan we had to talk to him. He knew we had been planning something with buying the RV, I had been telling him success stories of patients recovering from Long Covid, and by going camping he knew something was up. His reaction was not as strong as his first reaction when we told him we were going camping. He was still angry and didn’t want to hear much about our plan because he didn’t believe anything would work. He said it has worked for others but that doesn’t mean it will heal me. He said please leave me alone so I can process this. In the final days I had to pack Dylan’s belongings and he would actually tell me things to pack. June 19th finally arrived and we proceeded in the same way as we did when we went camping. Dylan wanted us to blindfold him and my husband had to carry him to the RV. He laid in the bed with the three dogs as we began our journey to heal our son.
Needless to say our journey in the RV with a sick child and three dogs, and summer heat was a challenge but we did it. We arrived in Fayetteville, Arkansas June 25 and Dylan started at The Spero Clinic on June 26,2024. The night we arrived Dylan wanted me to cut his hair that hadn’t been cut in over two years (it was long). I also had been giving him sponge baths for the last two years because of his nerve pain and not being able to hold himself up. That night he wanted me to really clean him for the next day, he endured the pain. We even picked out an outfit for the next day! We were ready but I was still so scared of how things were going to go.
Was Dylan too sick for them to heal, how was he going to stay in a wheelchair all day and follow a schedule when he could barely lay in bed, how would he wear clothes when his nerve pain was so severe, how would we feed him with his feeding tube during therapies, and how would he handle seeing and hearing people when he hadn’t interacted with people in over 18 months?
The morning of the 26th arrived and there was a huge thunderstorm that morning which just added to our obstacles. That morning we did our normal routines and I got him dressed. My husband started the handicap van and then came in to pick up Dylan to carry him to the van. I was expecting him to have a non-epileptic seizure, dissociate/blackout, and yell like he had each time we put him in the RV for our trips, but he didn’t. He just closed his eyes and let my husband, his dad carry him to his wheelchair in the van. He was willing to go and that in itself was a huge success!
We had finally made it to The Spero Clinic and were so hopeful!
8:30 am on June 26, 2024, Dylan started his day at the clinic.
When we entered the door the front desk staff was so welcoming and had smiles on their faces. Then we went to intake with an amazing and caring woman who made us all feel so welcome. At one point Dylan looked at me and I knew that meant he needed a break. Remember he wouldn’t talk to anyone else but myself and his dad. His dad took him to the bathroom and he was actually fine he just needed to go to the bathroom. We were so amazed at how well he was handling all of this. His first day was a full day of therapies and meetings of what to expect. We met his amazing doctor and all of his therapists and they were all extremely caring and kind. Spero was unlike any place we had ever been to before. By the end of the first day Dylan had cooperated with all the therapists and was willing to try all that was asked of him. We were so happy and so exhausted! After the first week Dylan dropped a bomb on us. He stated that he didn’t want to live anymore with this pain and he had felt this way for a long time. We talked for hours as a family and I also talked to his therapist. He said that Dylan had been through so much and now this journey at the clinic has probably overwhelmed him. Believe me we took his statement seriously and watched him carefully. We also knew that at some point in his therapies he would get help for his PTSD. As the weeks continued we just saw more small improvements and smiles.
In the first six weeks, we saw mental and emotional breakthroughs. Dylan started talking to his NMR therapist within the first week and then to his doctors the second week. He was texting his friends and as a family we were able to go to the grocery store and the book store shopping. Dylan then started smiling more at patients and then spoke to a wonder man who would always acknowledge Dylan even when he didn’t open his eyes and speak back. These were all small improvements and we knew we were in the right place. I knew from talking with a Spero mom prior to coming that we had to be patient and that it took time for the body to heal from the inside out. That was the hard part we had waited so long to get our boy back we wanted it so badly.
Every day we saw true miracles happening right in front of us. I was told by a Spero employee once who was patient herself that first you see the healing happening, then you start to believe it can happen to you, and then you do it yourself. That is exactly what happened to our son.
Week seven Dylan started to swallow for the first time in two years in cold laser therapy and then when he went to his NMR therapy he started to move his arms. His body was starting to wake up and heal. That weekend Dylan ate and swallowed all of the food he put in his mouth and he even wheeled himself around the parking lot and the movie theater. On Monday August 26 just two months after arriving at Spero Dylan started to walk.
The start of week eight was the beginning of a second chance at life for our son. That Monday morning Dylan could move all of his upper body, write on his own, and started to move his toes in his first therapy. Dr. K came to visit Dylan in his first therapy and told him how proud she was of him. We were all in tears but you could see the determination in my son’s eyes. He believed it now and he was going to heal and live life again.
That afternoon we left in our van for lunch like we always did and went to our favorite fast food restaurant drive through. In the drive through, Dylan said my legs are moving and I think I can stand up. His dad said how do you know if you don’t try! So Dylan unbuckled his wheelchair lap belt and seatbelt and stood up (the best he could in a van). We all started screaming and everyone in the drive through thought we were crazy. When we arrived back at the RV instead of my husband wheeling him out and carrying him into the RV Dylan walked out of the van on his own! He was a little rusty while walking because it had been over two years. But he did it. He walked around outside, went into the RV and put on his tennis shoes, tied them, went to the bathroom on his own, and washed his own hands. He was all smiles and so happy something we had not seen in a long time.
That night, Dylan pulled out his feeding tube that he had had in for two years. What a joy to see!
When we returned to Spero, Dylan stepped out of the van from the front seat (they kicked mom to the back seat) and one of his therapists saw him and ran to him, hugged him, and started to cry. We all walked into the clinic where everyone, patients, doctors, and therapists celebrated his huge accomplishment.
Others said he was an inspiration to them to keep going, that meant so much to Dylan. The clinic was just so uplifting and encouraging and that gave Dylan the determination to completely heal. Then the next day Dylan reached 100 in NMR therapy and joined the 100 CLUB! Which is very hard to do especially since before that day Dylan hadn’t gone over 30.
By September 9th just 10 weeks after starting at Spero we were sitting in the waiting room at the end of the day after his NMR therapy and Dylan looked at me so calmly and said, “Wow that’s weird it’s like all my pain just rushed out of my body.”
He was at ZERO pain for the first time in three years. Once again everyone celebrated his win! By this time as a family we had gone out to a restaurant to eat dinner. That was such an amazing site to see our son sitting in a restaurant, ordering dinner, talking to people, and eating dinner. Something you tend to take for granted. We rented electric scooters and rode them all around Fatteville. We had a blast. It was so much fun just enjoying life again. We also met some friends at Spero and went to dinner and the arcade with them.
Now Dylan’s goals were to walk normally, run, and jump. He was determined to accomplish this goal. In the beginning of our journey Spero had estimated 16 weeks for Dylan to graduate and he did it in 15 weeks. He had been pain-free for 5 weeks and had accomplished his goals of walking without a limp, running, and jumping.
Our journey home was much different than our journey to Arkansas.
We took our time driving home and enjoyed camping as a family in the beautiful fall weather. We arrived home on October 19th, 2024, with Dylan’s grandmothers waiting for us with open arms. Dylan had not seen or talked to them in almost two years because of his illness. He jumped out of the RV and hugged and kissed them both. There was a big beautiful WELCOME HOME sign, cookies baking, lots of smiles, love, and a beautiful clean house. Our mothers had taken care of our home like it was their own. And lets not forget our cat Lily that they had taken care of for 4 months. She was so happy to see us, especially Dylan.
From November to January, we had Dylan tutored in math so that he could return to high school (9th grade). Dylan returned to school in January of his 9th grade year. He has just completed his 9th grade year completely healthy and with straight A’s. He was able to go to his high school Valentine’s Dance (with a date) and had rejoined his friends. This summer, he will be taking driver’s ed and playing soccer in August for his sophomore year.
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