Arjan and Joanne are the parents of Levi (10) and Ruben (13), a young boy with severely disabling Long COVID. Arjan works as a mechanical engineer and Joanne as a welfare worker in a nursing home for the elderly.
Ruben is 11 years old when he gets sick with corona at the end of January 2022. Levi had a hard time in the family. The others only had some cold symptoms, including Ruben. But that changed. Levi got better, and Ruben's health got worse. “Ruben was extensively examined and after ruling out all kinds of serious diseases, the pediatrician ultimately determined that Ruben Long had COVID,” says Joanne.
Quest
The family has been to 15 care institutions with Ruben, both the medical circuit and the alternative circuit. To the general practitioner, pediatrician, rehabilitation physician, occupational therapist, physiotherapist, osteopath and kinesiologist, done smell tests and tried infrared. With gradations they increasingly lose hope that it will turn out well. Arjan: “For a long time we had the feeling that things would turn out fine, it wouldn't be that bad, but now a year and a half later we have really tried everything in the hope that things would turn out fine.. "
Pain and rehabilitation
Ruben: “I have a lot of pain in my whole body, all kinds of pain, day in day out and extreme fatigue. Because I no longer have taste and smell, I also no longer enjoy eating. Very occasionally I taste something for 1 second. That is sometimes once a week, but can also be gone for weeks.”
Ruben tried hypnotherapy to distract him from his pain. He was also given a drug that eventually reduced the nausea and headaches somewhat. In the summer of 2022, Ruben was referred to the rehabilitation center by the pediatrician. He was 12 years old and was admitted for nine weeks. In retrospect, this turned out not to be a good idea. Arjan: “I regret it like the hairs on my head that we continued the rehabilitation process with such confidence, despite the fact that Ruben got worse every time he came home. We discussed it with each other, but it was our last straw, Ruben wanted to get better so badly! The rehabilitation doctor was not aware of PEM complaints, and let Ruben go way too far beyond his limits, while this is not recommended for PEM. He came back from the therapy a wreck.”
Perspective
Ruben's school was understanding of the situation and there was occasional contact with the Internal Supervisor, although a bit more instruction on what the family could have thought about was missed. Joanne: “In the beginning, Ruben could still do some sums online, but from December 2022 it was no longer possible. He would then go to school for 15 minutes, and come home broken and feeling bad. He was exhausted and could no longer do anything. Ruben also lost his social contacts. He no longer meets up with friends.II would really like to. But I really don't have the energy for it", says Ruben.
He wanted to go to secondary education, as a smart student who was challenged extra, he looked forward to new challenges. However, he has now had to miss half of the school year in group seven and all of group eight. Joanne: “The farewell to primary school was very confronting. He also had to miss the camp, the end party and the farewell. All children leave, develop and continue with the next phase. Ruben has to miss this, for him there is a standstill in his (educational) development. That confrontation time and time again, it upsets him every time.”
Ruben suffers from brain fog and memory problems. He can't read because letters dance and the material simply doesn't get through. He can't do sums either, he can't visualize it, he doesn't even know the tables anymore. Something that used to go well, doesn't work anymore. At the moment there is also no perspective. Joanne: “He is registered at the SVO (special secondary education) but we see that he can't really do anything there, not even in an online lesson. He is creative and has material read out, but he has to run it through ten times, because he has already forgotten the material after running it through.”
Family life
Arjan: “Life has really come to a complete standstill for Ruben. The disease is very disabling. Ruben was always a healthy boy and very active, did everything and could do everything, and now he can do nothing and sleeps and rests for large parts of the day.” Ruben himself also indicates that the loss is great. Ruben: "I miss going to school and learning new things. My great passion was drumming. I look at my drum kit but I can't play it because of the pain and fatigue. Everything I used to do I can't do now. That's why the days are long, I'm bored and life is boring.
For Arjan, Joanne and Levi too, life has changed completely and has been limited by Ruben's sensitivity to stimuli. No music, no films and the brothers miss each other as playmates. Being together as a family is not possible, they always have to split up. Someone always has to be home for Ruben, so that he doesn't forget to eat or drink. The family also goes on holiday without Ruben. At home, Arjan and Joanne do all the care themselves and they both work. Joanne has cut back considerably on hours and works when Arjan is home, and conversely, Arjan works when Joanne is home. Both of them are now unable to use their employment prospects due to the continuous care for Ruben. Arjan and Joanne: “Everywhere you go or do anything you are confronted with the situation. Emotions of helplessness, anger, frustration and sadness alternate. Only at work can you escape the situation at home for a while.”
Support by C-support
Arjan and Joanne were supported by an aftercare advisor with information and advice about the care trajectory. The right to double child benefit via CIZ was not yet known to them. The situation at school and the home education options of Ziezon were discussed. A Medical Advisor from C-support also visited the home. Arjan and Joanne found it valuable support. In addition, a buddy was found for Ruben and he now occasionally has app contact with another child with Long COVID. Ruben: “Nobody understands having Long COVID, except people who have it themselves. That is also the problem. People try to understand and empathize, but how I feel is only known by people who also have Long COVID.”
Future
After a long wait, the attending physician from the hospital was finally able to secure a place for Ruben in the special outpatient clinic for children (POCOS) at the Emma Children's Hospital in May 2023. He is now being treated there. The family is looking forward to an expertise center, a place where they can look at Long COVID with a multidisciplinary team. Arjan: "You can't go somewhere else every time, that's too tiring so you have to make choices. One place would simplify this so much." The urgency to work on trials and the funding for this is also missing according to Arjan. The lack of perspective due to the absence of work/school or financial problems makes Long COVID even more disabling.
Message
The boy who dreams of playing drums and piano and a future at the conservatory is working on accepting his limitations and complaints, but remains hopeful. His message: “There needs to be more attention, money and research for children with Long COVID. Hopefully there will soon be a medicine that can help me and others to get better again.”
