While the “long Covid” of adults has been recognized and taken care of since February 2021, many families find themselves helpless in the face of their adolescents suffering from various and disabling symptoms after an infection with the coronavirus.
The Haute Autorité de Santé published on Friday recommendations to quickly diagnose and manage multisystem inflammatory syndrome (PIMS) in children (up to 11 years old).
And some families hope that this first step will ultimately lead to wider recognition of the “long Covid” of children and adolescents.
20 Minutes
gave them the floor.
“We're finally moving forward!
".
This is how the long testimony of 14-year-old Michaël ends.
Since April 5, 2021, this Strasbourg teenager has been suffering from pain throughout his body, has difficulty urinating, weak legs, blurred vision ... And three months after catching Covid-19, he is finally taken care of in this early summer.
Like an adult with "long Covid".
Because today in France, if the "long Covid" has been a recognized disease for adults since February, this is not the case for children and adolescents.
"Since then, I know that I am neither alone nor crazy, that I have to stay positive"
Before his treatment, Michaël had heard from a psychologist that he wanted to "attract attention".
"We, the" long Covid ", we do not understand us, he regrets.
I know it's a new disease, but to the point of saying that we are inventing… We are not going to have fun doing this while we are in pain!
"
After months of unanswered consultations, it was a woman from the Regional Health Agency who advised her mother to contact a professor specializing in "Covid long".
Relieved to finally be listened to and taken care of, Michaël has just undergone a PET scan and has started physiotherapy sessions.
What also helped him was a Facebook group of long-term Covid patients.
“Since then, I know that I am neither alone nor crazy, that I have to stay positive and that I support these children and these teenagers.
"
A complicated diagnosis to make
However, it is not easy to diagnose these young patients.
Because the symptoms of "Covid long" are extremely wide, from stomach pains to tingling in the hands, through skin reactions ... And very variable depending on the patient.
Alicia, 17, tested positive in January 2021. “Two weeks after the test, I felt very tired, like in a fog. I got up without remembering why, I forgot all my phone numbers. I was losing my hair, I had tinnitus, rashes. I still have pain, memory and concentration problems. I can only sleep 2 or 3 hours a night despite taking antidepressants. I am followed by my attending physician, who was able to manage my long Covid and its evolutions well, and recently at the CHU by a neurologist. "
How can we be sure that these symptoms, in healthy adolescents, are linked to Covid-19 and not to a chronic disease?
"It is all the more complicated as in the blood tests, we do not find anything", recognizes Michaël.
And that the standard exams don't reveal much.
Doctors are all the more helpless.
And many then suggest the psychiatric track.
Parents' wandering and annoyance
This wandering and these psy diagnoses translate into an amplified worry and a lot of annoyance on the side of the parents.
Bianca was in despair in the face of some deaf doctors with the pains and the various symptoms of her 14-year-old son Hadrien.
“The doctor is interested in one symptom, but not the rest.
I do not understand that they remain in their certainties.
"
Since March 2020, Antoine, 13, "walks like a very old person", summarizes his mother. After seeing three cardiologists and many other caregivers, a specialist in post-viral fatigue syndrome ends up ordering an examination, which reveals that the teenager is suffering from postural orthostatic tachycardia (STOP) syndrome. "A treatment to relieve it is finally instituted in May 2021, after months of wandering," resumes her mother. It allows him to stand 5 to 6 minutes without feeling the need to sit up and without shortness of breath, whereas this period was 1 to 2 minutes before the treatment. Without it, we probably would have ended up using a wheelchair. "
These parents are therefore trying to find treatments to relieve their children's pain.
But also solutions so that their education does not come to an abrupt end.
This is why many of them are pleading for recognition of these “long Covid” in children and adolescents, which would make it possible to advance on the nascent research on this disease.
A first step towards recognition?
Precisely this Friday, the High Authority of Health (HAS) published new recommendations for the management of multisystem inflammatory syndrome (PIMS) in children. She specifies: “520 cases were identified in France on June 13, 2021, including one death, and two thirds of the children were hospitalized in intensive care. This syndrome is not well known and the suggestive symptoms (association of fever, an alteration of the general condition and digestive disorders) are not very specific, which can lead to a delay in diagnosis, especially since the infection with SARS-CoV-2 is often not very symptomatic, or even asymptomatic, in children. "
“An advance, but insufficient, nuance Cristina, administrator of the Facebook group which collaborates with the association AprèsJ20.
PIMS is the most serious and rare form of the "long Covid" in children.
Some families were pushing for this recognition to go beyond.
"The decisions vis-à-vis children [school closure, vaccination] would not be the same if we realize that there is a risk of long Covid in minors," she says.
Especially if many of them are affected ...
A lack of data in France
If the figures vary enormously and France has not published any national study on the issue, according to the World Health Organization, one in ten patients remains ill after twelve weeks (all ages combined). For its part, the British National Statistics Office estimated that of nearly 500,000 children positive for the coronavirus in the United Kingdom, 12.9% of 2-11 year olds and 14.5% of 12-16 year olds still had minus one symptom five weeks after infection. Mainly fatigue, cough, headache, loss of taste or smell and muscle pain.
"In France, there is a terrible inertia on this subject, attack Cristina.
In line with what is said: "Children do not risk much, they do not contaminate" ... It is unfortunate that in July 2021, parents find themselves in the same chaos as me in April 2020. " And Michaël, 14, to end on a note of hope: “Things are starting to move forward for the children, I hope that we will soon be taken into account.
The "long Covid" for teens may be rare, but it is not nothing.
"
Health
Coronavirus: Mobilization on the networks, proposal to the Assembly ... Anything new on the Covid long front?
Health
Coronavirus: 60% of hospitalized patients have at least one symptom after six months, study finds
Covid 19
Coronavirus
Health
Child
Parents