Breathe
By Mónica Maldonado Torres
I am a mother of three children. Two of them are diagnosed within the autism spectrum and since we received the diagnosis they have been accompanied by many people who have supported them to overcome all their challenges, such as language, which fortunately is starting to flow after a few years, but in this case played a fundamental role.
One day, one of my neuro diverse children had an accident in kindergarten and hurt his foot. Initially we thought it was a sprain so we opted to put an ointment on it but he kept saying "here" while pointing to the affected ankle.
The recommended
The next day we decided to take him to the orthopedist recommended by one of the doctors we usually go to. The doctor at the consultation, having no verbal response from the child to his questions, decided to do an ultrasound and because 15 days before my son had suffered from the flu, he ruled that he had "reactive arthritis" and sent him some medicines for the inflammation.
After a week, the little boy's foot did not improve, on the contrary, it looked more fragile and he walked with greater difficulty, so we went back to ask the doctor but he could not help us.
The well-known
My husband decided to consult an acquaintance, also an orthopedist, over the phone and he recommended us to take him for a check-up. I took him and the same thing happened, he asked more questions, my son did not answer and I had to explain what had happened. He sent him x-rays, which did not show any injury, and he told me that it was probably a sprain, so he prescribed a flexible ankle brace and more medicines and made an appointment for two weeks later.
After a week my son got worse, so the doctor recommended that we now take him to a "partner of his".
The partner
Upon arriving with this doctor, who we will call Doctor V, something happened that would change our lives for the next few months:
In a very arrogant and unempathetic manner, he told me that he did not need to do any tests, that just by seeing him he knew what he had and that little by little he was going to lose motor skills in his whole body. Just by seeing how he stood up from the floor with difficulty, he diagnosed him with Guillain Barré Syndrome or Duchenne muscular dystrophy, because according to him he had Gowers' sign.
When he left, he gave me a prescription with the diagnosis and a treatment of 10 sessions of physiotherapy. And so, overnight, we went from reactive arthritis to a sprain and then a dystrophy that would get worse every day and eventually lead to his death.
Like any family that receives such a diagnosis, everything Dr. V. told me alarmed us, bothered us and above all distressed us for months. But we immediately began to investigate to seek the opinion of other specialists.
Meanwhile my son kept getting worse, he tried to walk but his knees started to hurt and he would sit on the floor and crawl sitting down to get where he wanted to go, or he would ask to be carried by extending his arms and saying "carry mom", "no walking", he would cry and despair that we didn't understand what was really happening to him.
The traditional
We took him to his neurologist, who has known him since he was two years old, and upon hearing about the experience, she told us that it was very unlikely that he had any of these diseases, but she gave us the option of doing several blood tests if we wanted to rule out these diagnoses one hundred percent. We did so, and we also sought another orthopedist. The latter, upon learning of the situation, decided to cast his leg for two weeks and send him for a knee ultrasound, which did not yield any relevant data, but warned us that if he presented a fever we would have to take him immediately to the emergency room.
When the two weeks were up, we returned to remove the cast and the doctor gave us a prescription for five and then ten rehabilitation sessions. At the beginning my son could not stand the therapy which consisted of placing devices that made his leg vibrate; his sensory challenges made it very difficult for him to tolerate it during the 50 minute sessions, but little by little he got over it.
At the end of the rehabilitation we returned to the orthopedist because although my son was no longer in pain, he still could not walk well, he limped and tired very quickly, and when he sat on the floor and was asked to get up he still did it with movements similar to the Gowers maneuver, now this doctor referred us back to the neurologist for a review for a possible problem of dystrophy or neurodevelopment. His work with us was over.
The team
Our neurologist, who could not believe that we had been given such a diagnosis in the first instance, was surprised to learn that the last orthopedist sent us back to her because of the same suspicion. What she noticed was a drop in muscle tone that needed to be addressed from another angle. And our speech therapists and sensory integration therapists -who had followed the evolution of the case with us day by day-, were upset along with us about how all this had become complicated. One of them recommended that we consult a nutritionist and a therapist who was an expert in the rehabilitation of children on the autism spectrum.
These exceptional specialists helped us to understand what had happened: my son had suffered a sprain, which became chronic because he was poorly cared for from the beginning, and had also caused a drop in muscle tone because his leg was immobilized. The result: weakness and proprioception problems that had to be addressed from a sensory integration point of view.
We started a special diet and a series of sessions given to him by his therapists with a lot of patience, encouragement and love. My son made a full recovery after several months of injury.
The reality
In retrospect I analyze what happened and I regret very much the lack of sensitivity of the doctors we visited, and above all I resent the lack of professionalism of Doctor V, who ventured to give a diagnosis simply because he did not know what to do.
Often these same doctors are the ones who raise their voices and speak out about the need for more inclusion and respect for neurodiversity in schools, in restaurants, in the workplace, but overlook the fact that they themselves, in their own disciplines, may be being too cold and unempathetic, treating one consultation after another with the same measure, instead of putting all their acuity and heart into trying to understand a 6-year-old autistic child who is trying their best to say "it hurts here".
Doctoralia's position
Some time after what happened, when we were certain that my son did not have any of the diseases we had been diagnosed with, my husband posted a review on Doctor V.'s profile on Doctoralia in order to warn other parents about the unprofessionalism of this individual, who had mistaken a sprain for Guillain Barré Syndrome.
However, the response he got to his review was not what he expected. Unlike when you enter a positive review that is published immediately, on this occasion the response was that they were going to review her comment. Then they sent her another message, saying that they needed to verify that the quote had been made via that application in order to publish it (which they don't ask for when it is positive) and finally they rejected it. Such a response was to be expected from a company whose business is to maintain a good relationship with doctors.
Anyway, as a mother of two children on the spectrum, I realized that you should not believe everything you hear from a "specialist", it is better to go to those who are sincere, humble, who dare to say "I don't know" and accompany you along the way.
And on the other hand, never stop trusting in your children, in their ability to overcome all their adversities and challenges. As moms and dads, we must accompany them every day and be their ambassadors, until the end, because there is still a long way to go in this country in terms of inclusion and neurodiversity.
*Monica is an Actuary graduated from Universidad Anahuac, with a Master's Degree in Insurance and Risk Management from Universidad Pontificia de Salamanca in Madrid and with extensive experience in risk management for mass entertainment events. She is the mother of three children and fights tirelessly to expand the opportunities for inclusion of children with neurodevelopmental challenges, as well as the recognition and respect for neurodiversity.
The opinions expressed are the responsibility of the authors and are absolutely independent of the position and editorial line of the company. Opinion 51.
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