Children also have strokes and these are the keys to dealing with them

The Professional College of Physiotherapists of the Community of Madrid, the Beata María Ana Hospital and the Sin Daño Foundation are launching a campaign to make visible that the little ones also suffer strokes and take a series of steps to prevent the sequelae from being so serious.

If it is difficult for you to move half of your body, if your mouth twists, if you have difficulty speaking or understanding, if you do not see well or if you are suddenly very sleepy… You have to react quickly. These are some of the symptoms for which the Pediatric Stroke Code should be activated immediately.

“He was in his room playing with the 'tablet' one Easter Sunday and, suddenly, he came to the living room saying that it did not work well. It wasn't the machine, but his hand that was failing,” says Fernando of his son who suffered a stroke at the age of 6.

At the slightest suspicion, it is best for the family to call 112 for an ambulance to come. In addition, it is important to know that in Madrid there are three reference hospitals that take turns to treat pediatric strokes 24 hours a day, every day of the week: La Paz, Gregorio Marañón and Doce de Octubre.

The Professional College of Physiotherapists of the Community of Madrid, the Beata María Ana Hospital and the Sin Daño Foundation have come together to activate this campaign to help parents and health workers to recognize the signs.

Fernando had volunteered in Civil Protection and, therefore, he saw clearly what was happening. But Sandra didn't know until the doctors told her.. He left his other daughter at school and went with the baby to a small. The child was sleepy and did not wake up. It didn't surprise him. Until he went to breastfeed and saw that he was going to one side. So, he got scared. He ran to the hospital and, from that moment, a whole nightmare began until he reached the diagnosis. “I did not imagine what it was,” he admits. That is why when the neurology service explained it to him, he began to cry. I only had references to what happened in adults. “So I thought she was dying or was going to be very bad. I wasn't informed,” she laments.

STROKE IN MINORS

“That is why this campaign is necessary. Society does not know that children have strokes. it is not common. And it is important that the family is aware that when in doubt they have to call 112. At that time, the pediatric stroke code will be activated and a mobile ICU will take you to one of the three hospitals that will be prepared to care for your child, with 24-hour MRI and intervention mechanisms.. It is the fastest way to act, much better than taking him to the nearest hospital through the emergency room,” says Paloma Pastor, president of the Fundación Sin Daño.

Ana Herrero, president of the Neurology Commission at Colegio Fisioterapeutas de Madrid, agrees with her. “It is convenient not to be mistaken. It's urgent,” he says.. For her, this campaign serves “to visualize and raise awareness among the population about pediatric stroke”. He believes that “in these cases, one cannot speak of prevention, but of knowledge”. “Working from knowledge helps. It is convenient that people know this to avoid injuries that are more serious than those of older people.”

“A distinction can be made. It's not just a headache. If he can't move his body and his language is erratic, it's obviously something serious.. If they are told to raise both arms and one of them does not raise it, for example,” explains Beatriz Gavilán, a neuropsychologist at the Beata María Ana Hospital.

In recent years there have been important advances in the management of stroke in adults, achieving a reduction in mortality and less repercussions.. In the case of the child population, however, there are not so many data. “It's rare, but it happens,” says Gavilán. For her, the best thing to do is call the ambulance “because it doesn't take long to arrive and those who know what they have to do go there.”

In his opinion, it is essential to act “from minute one”. “Early diagnosis is the main tool for applying therapeutic measures that can limit brain damage,” says a document prepared by the Community of Madrid working group.

LONG TERM AFTERMATH

It also details that around 80% of children who survive a stroke will present long-term neurological sequelae, the main ones being motor (50-80%), language (30%), difficulty learning and development of cognitive functions (30%-67%), as well as behavioral disorders. Therefore, it is an emergency and examinations and tests cannot be delayed. It is crucial that children are seen “within two hours from the onset of symptoms” by a specialized team.

“These are very heterogeneous, it depends on each child. each case is different. It influences from where it has been, to the attention that has been paid to it. In the rehabilitation services they make a complete assessment. It is important to see how he behaves”, highlights Gavilán.

Herrero also sees it vital that an early rehabilitation be carried out. “The first eight months are very important for recovery,” he maintains, noting that in some places they begin with therapies already in the ICU.

STROKE CODE

The Pediatric Stroke Code was launched in the Community of Madrid in a pioneering way in 2019. According to the data provided by the Transparency Portal of the capital, it has been activated 51 times in 2019; 59, in 2020; 69, in 2021 and 13 times, in 2022. This code does not exist in all autonomies. Only where there is more child population density. Thus there are areas of emptied Spain in which the little ones will not receive this attention.

Experts consider that this code should be implemented “at the national level”. “Although it is difficult because the sanitary competences are in the hands of the regions and each one does what they consider,” says Herrero.

It may not be possible to implement it in all territories, but it would always be convenient for Health to echo it so that there would be an action protocol. “That doesn't cost anything. It's not a matter of generating alarm. It's about letting it be known,” insists Herrero. “A strategy at the national level would not hurt. Everything contributes,” agrees Pastor.

FAMILIES

Furthermore, when these cases occur, they are more relevant due to the high life expectancy. Many people think that they will recover better because the brain is more plastic. “But you also have to see that they have a greater vulnerability. They have not developed. There are simple skills that they can recover, but others cannot,” the neuropsychologist develops.

Added to this is a common complaint from all those who have experienced it.. And it is that after three months “they discharge you and they are no longer sick.” “There is no help,” lament the professionals. Also families that suffer a multitude of changes from one day to the next. “Everything breaks,” admits Fernando. “It's affected all of us. It's chaos when you come home with him from the hospital. It's very hard.”

But, for that very reason, it stresses that it is very important to “fight” so that health workers and parents know it and are prepared. Their son is now 13 years old and although he still has some problems, they are confident that the future can be independent.

He is now supervised by a unit specializing in acquired brain damage at the Niño Jesús Hospital in Madrid. “It is a lottery and we have been lucky because they are very well treated there. It is a great support, a relief. Also financially because you can't afford it,” he explains.

Like him, Sandra has also had to be strong to get through it all. Also, in his case, he had a pretty bad time at the hospital. In the midst of the covid-19 pandemic, alone, with her son in a crib, she decided to take an inflatable mattress to sleep and, in the end, it was the best thing she could do because that's how she began “to move and turn.”

It regrets that there are so many rare diseases diagnosed and stroke is so forgotten. “It does not appear, it is not catalogued. So, what support do we have?”, he wonders.

Now, he admits, that the little one does not notice anything. There are details that only she appreciates for being her mother. But there are no physical sequelae for others to see. “He is very stimulated and has improved,” he says. The little one has constant revisions and she admits that it is difficult to live in fear. Although you have to do it.