Twenty contractions in two minutes
These strange outbreaks persisted on Monday, Anne filmed her son’s spasms with her phone and submitted them to her older sister, a neonatology nurse. “She then advises me to contact the pediatrician. As she happened to be on vacation that week, we decided to wait for her return.” The young mother is a little reassured. But when, upon waking up from her nap at 3 p.m., Orel reproduces this spasm around twenty times in two minutes, Anne, who lives in Ollon in Valais, goes directly to the Clinique de Valère, in Sion.
“I arrive at the pediatric emergency room and wait two hours. I was received at the last minute, at 5 p.m., as a very last appointment. I talk to the doctors about my son’s spasms and above all I show them the video. There, I see their faces freeze. They made a call to neurology and immediately sent me to the department of Claudia Poloni, an exceptional pediatric neurologist who saved our lives. At this moment, I don’t know it yet, but if I hadn’t filmed Orel’s spasms, our child would certainly be disabled today.”
Epilepsy in infants
Because, yes, if West syndrome advances masked by producing these slight contractions in infants aged 3 to 7 months – in extension, in the case of Orel, or in flexion, in other subjects – its effects are devastating for babies’ brains. “This syndrome, also called epilepsy of infants, corresponds to a brain storm,” explain Anne and Pierrick. That is to say, during spasms, neuronal transmissions are completely scrambled. The longer we wait before stopping the storm, the greater the cognitive damage, to the point of completely erasing the acquired learning. In the worst case, a child suffering from West syndrome which is not stopped can become multiple disabled,” explain the parents.
At this moment, comfortably seated on the family sofa, in Ollon’s house, I observe Orel, 18 months old, who is happily scampering from his police car (with siren, very important!) to his cuddly toy Bambi. He looks perfectly healthy. “He is,” confirms Anne, who has just submitted her son to the last encephalogram, eleven months after the crisis. Orel is officially cured and can stop taking the medication that saved him from severe disability.
Stressful rush
“There too, we were very lucky,” remembers the young mother. Even before Ms. Poloni could see our son and give us the final diagnosis, the two pediatric doctors administered vigabratin to Orel, who immediately reacted positively. It was a relief, but on the other hand, this rush around our baby was very stressful. Wherever we arrived, we were received as a priority and, after the first encephalogram, on Tuesday morning, for which I had to put Orel to sleep in my arms while I was extremely agitated, the nurses told me: “In all case, you were right to come, we will see each other often!” These are the kind of sentences that go boom in your head,” sighs Anne.
No brain damage
Tuesday afternoon, Doctor Poloni gives the precise diagnosis while explaining to parents the contours of West syndrome. At this stage, the doctors are not yet sure that the medicine administered to Orel in the morning will work fully, but they are confident. Thanks to the video and Anne’s early reaction, the baby should be able to avoid major injuries. On Wednesday, the MRI confirms that Orel’s brain is intact: the medicine is working correctly, the parents can start breathing.
“If vigabratin had not worked, we would have had to try something else. Children very affected by West syndrome are apathetic, no longer turn around, no longer eat, no longer speak. The horror,” the parents tremble.
Panic fear of relapses
Orel, fortunately, escaped this fate. His only treatment consisted of taking this medication in the form of a syrup, at a rate of 5 ml in the morning and 5 ml in the evening, to begin with, then reducing the doses until September 18. With consequences on his mood? “At first he was a little high, then nothing. On the other hand, we were quite stressed, because the syrup had to remain at a constant temperature and we had two or three situations, particularly on vacation, where we feared not having enough reserve or not at the right temperature. », remembers Anne.
Obviously, the syrup wasn’t the only problem. What the couple had to face and overcome was the panicky fear that gripped them during the crisis and put them under pressure, as well as the fear of relapse. “This fear is only starting to let go of us now,” notes Anne. Since we had the final diagnosis, we realize to what extent we have put our lives on hold to devote ourselves solely to Orel. We tried to behave normally with him, but as soon as he repeated a gesture several times or simply stared into space to recharge his batteries, which all children do, we were on edge, fearing the return of the syndrome. »
Rediscover innocence
It’s also that Orel already had a strange phase, at 3 months, where he would contract, arms outstretched, when he was afraid. “It was already some kind of spasms. And we know that children affected by West syndrome are more likely to develop epilepsy from the age of 5, so the climate remains heavy… In fact, what we would like is to regain our innocence before the crisis, erase this episode which poisoned our first months with Orel,” says Anne.
Pierrick confirms. “I feel like I clearly have anger inside me. When we know that this syndrome affects four children out of 100,000 and that, in Orel’s case, its onset is idiopathic, that is to say that nothing in him or in us explains this illness, I cannot I can’t help but blame the fate that imposed this on us.”
Overcome denial, release feelings
Did the couple get help to overcome this trauma? “Yes, a child psychologist came to the house to talk with us. But, as we had closed ourselves off to our emotions during the treatment, we were in a sort of denial and were unable to find the words to express our feelings. Now, we would be more ready to talk about it,” replies the young mother.
Pierrick also suffered from the gap between those around him and what he felt. “As soon as Orel seemed out of reach, people quickly moved on, saying: “It’s okay now, relax!”, while we were still completely tense, afraid the slightest relapse. Even now that the final diagnosis has been made, we remain marked. This state is hard to overcome.”
A happy baby, parents under tension
Anne confirms this sneaky stress evidenced by her current eczema. During this year of treatment, when she entrusted her son to his mother or mother-in-law, she never stopped asking them if Orel was indeed the same as the one they had known before the crisis. His obsession? Constantly checking and verifying that nothing in the baby was altered.
“No doubt our emotion was all the greater because we didn’t see anything coming. And that nothing has happened to justify this syndrome. Besides, it’s crazy, but Orel always continued to smile. Suddenly, you have on the one hand a completely normal baby and, on the other, a crazy threat hovering over his health,” summarize the young parents.
Back to normal
Fortunately, Pierrick, who is a building designer, has started music again in his brass band and Anne, who is an auxiliary in a nursery in Chermignon, has launched a podcast with her sisters-in-law and dreams of starting to sing again. Little by little, life is returning to what it was before the crisis. And the couple would not be against a second child…
“Above all, we would like to thank Ms. Poloni, who has always enlightened and supported us. She immediately gave us her private contact details and invited us to call her if we had the slightest concern, even in the evening or on days off. She is a top pediatric neurologist, who is in high demand, and yet she gave us all her attention,” greet the two parents. The couple also emphasizes the importance of their respective families, loved ones who have been of great help to them and to Orel, “with their infinite love and their presence at all times”.
Orel, in fact, stares at us with his big brown eyes. Big shot of charm. We look back at him with a smile and we wonder what this little guy will keep from this storm in and above his head.
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