Lyana
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Hello, we are the parents of our pretty princess Lyana.
Lyana is our first baby, pregnancy went extremely well, no negative symptoms, ultrasound and perfect blood test.
Lyana was born by a scheduled cesarean, I take the news very well and know that on October 19, 2023, our baby will be among us. The caesarean went well, all of us were relaxed and in good moods. Her dad even stayed with her two hours while I left the room. Shortly after, we are transferred to our room. Lyana is so beautiful, her weight and size are perfect.
The first day Lyana has reacts to all possible noises…even the quietest. The second day Lyana started to show slight tremors. Nicolas his dad notice that there is a problem and alerts the team. We are then told that Lyana is epileptic. I, as her mother, have been epileptic since I was 15 years old. The pediatrician came to observe Lyana and reassured us by telling us not to worry and tremors are quite common in newborns. When we put our hand on our child’s arm the tremors are supposed to stop, but when we put our hand pm Lyana’s arm, the tremors do not stop. It was then that we knew that the doctors were wrong.
On the night of the second day, a midwife came into our room to see if all was going well. She observed Lyana and is immediately surprised to see these tremors. She asked us if she can film Lyana on her mobile phone to show different doctors. An hour later, Lyana was transferred to neonatology to be observed where she ends up with a rise in temperature. With everything happening, we had to forbid any visits. Lyana stayed five days in neonatology. Her doctors came to tell us that they were not specified in Lyana’s symptoms and that she will be transferred to the hospital of Poissy where they can do more thorough examinations
Lyana stayed for three days at the hospital in Poissy where she underwent a lumbar puncture and an MRI, but all the results were normal. The doctors proceeded to tell us that it is probably sleep myoclonus.
Of course, with his dad, we knew that the diagnosis was wrong. With no positive results, the doctors tell us that Lyana must go home because she had no more fever and no reason to stay.
On October 26, 2023, the three of us go home, far from being reassured by our daughter’s health. The tremors never stop. Lyana is a baby who cries a lot with no peace. I film all of these moments as evidence for doctors. On December 5, 2023, her dad has to go back to work and I warned him that if Lyana makes any more strange movements, I would immediately call the firefighters. I knew that day was coming. Lyana ended up having her first REAL crisis at 4:30pm in the afternoo. I immediately started to film to have proof that there is no myoclonia.
Lyana is our first baby, pregnancy went extremely well, no negative symptoms, ultrasound and perfect blood test.
Lyana was born by a scheduled cesarean, I take the news very well and know that on October 19, 2023, our baby will be among us. The caesarean went well, all of us were relaxed and in good moods. Her dad even stayed with her two hours while I left the room. Shortly after, we are transferred to our room. Lyana is so beautiful, her weight and size are perfect.
The first day Lyana has reacts to all possible noises…even the quietest. The second day Lyana started to show slight tremors. Nicolas his dad notice that there is a problem and alerts the team. We are then told that Lyana is epileptic. I, as her mother, have been epileptic since I was 15 years old. The pediatrician came to observe Lyana and reassured us by telling us not to worry and tremors are quite common in newborns. When we put our hand on our child’s arm the tremors are supposed to stop, but when we put our hand pm Lyana’s arm, the tremors do not stop. It was then that we knew that the doctors were wrong.
On the night of the second day, a midwife came into our room to see if all was going well. She observed Lyana and is immediately surprised to see these tremors. She asked us if she can film Lyana on her mobile phone to show different doctors. An hour later, Lyana was transferred to neonatology to be observed where she ends up with a rise in temperature. With everything happening, we had to forbid any visits. Lyana stayed five days in neonatology. Her doctors came to tell us that they were not specified in Lyana’s symptoms and that she will be transferred to the hospital of Poissy where they can do more thorough examinations
Lyana stayed for three days at the hospital in Poissy where she underwent a lumbar puncture and an MRI, but all the results were normal. The doctors proceeded to tell us that it is probably sleep myoclonus.
Of course, with his dad, we knew that the diagnosis was wrong. With no positive results, the doctors tell us that Lyana must go home because she had no more fever and no reason to stay.
On October 26, 2023, the three of us go home, far from being reassured by our daughter’s health. The tremors never stop. Lyana is a baby who cries a lot with no peace. I film all of these moments as evidence for doctors. On December 5, 2023, her dad has to go back to work and I warned him that if Lyana makes any more strange movements, I would immediately call the firefighters. I knew that day was coming. Lyana ended up having her first REAL crisis at 4:30pm in the afternoo. I immediately started to film to have proof that there is no myoclonia.
I immediately called the fire department, as Lyana made bubbles with her mouth and her eyes completely empty.
The firefighters arrived on site while Lyana convulses and they decide to call the SAMU. We are very quickly transported to the hospital of Poissy, while knowing that it is not the right hospital for Lyana. Her crisis lasted two hours. For 3 days, the doctors filmed Lyana to send videos to the neurologist of the Necker Hospital in Paris. On the afternoon of the 3rd day, Lyana had her second big crisis. The doctors had to give her oxygen and an emergency treatment to stop it. We finally learn that Lyana will be transferred to the hospital Necker in Paris and we will finally know what is wrong with our little girl.
On December 8, 2023, Lyana had a 24-hour EEG. There was a crisis every 10 minutes for 24 hours. It was unbearable to see such a small baby suffer so much. Once the examination was completed, they gave her a treatment to stop the crises and Lyana finally sleeps peacefully. Lyana ends up with another MRI and blood draw. I thought I was dying of sadness. Her father and I do genetic blood tests to either find the disease or know if it came from me or her dad. Treatment is given. Neurologists think it’s focal epilepsy, so she’ll have treatment to treat only part of the brain.
The firefighters arrived on site while Lyana convulses and they decide to call the SAMU. We are very quickly transported to the hospital of Poissy, while knowing that it is not the right hospital for Lyana. Her crisis lasted two hours. For 3 days, the doctors filmed Lyana to send videos to the neurologist of the Necker Hospital in Paris. On the afternoon of the 3rd day, Lyana had her second big crisis. The doctors had to give her oxygen and an emergency treatment to stop it. We finally learn that Lyana will be transferred to the hospital Necker in Paris and we will finally know what is wrong with our little girl.
On December 8, 2023, Lyana had a 24-hour EEG. There was a crisis every 10 minutes for 24 hours. It was unbearable to see such a small baby suffer so much. Once the examination was completed, they gave her a treatment to stop the crises and Lyana finally sleeps peacefully. Lyana ends up with another MRI and blood draw. I thought I was dying of sadness. Her father and I do genetic blood tests to either find the disease or know if it came from me or her dad. Treatment is given. Neurologists think it’s focal epilepsy, so she’ll have treatment to treat only part of the brain.
We end up going home on December 19, 2023.
The days go by and I resume my work of hairdressing. It is my grandmother who keeps Lyana during the day so that she is supervised. Lyana suffers and cries every day. I end up having to quit my job because Lyana’s seizures will not stop. Lyana usually has a crisis every day and it is sad to say, but it has become a habit. We always had to be very careful about how we wear her and how we put her down because as soon as we change places, she has tremors. We are so afraid to take our baby into our arms. We have to pick her up extremely gently because the slightest shake and Lyana will an absence seizure.
The following days, Lyana is 3 months old and her doctors tell us that they are worried about her development.
-Lyana doesn’t look us in the eye
-She doesn’t catch anything
-She does not present as a typical child
– She can’t keep her pacifier in her mouth
– She laughs only at sounds
-And she is severely constipated all the time
The Necker hospital puts a strategy in place very quickly the necessary to help her catch up. She goes into a structure called the CAMSP, where has sessions of psychomotricity. Months go by and he routine is very complicated, especially with Lyana always crying painfully and constantly These crises do not stop. On April 27, 2024, we start being very worried about Lyana. She screams with pain since she was three days old. We insisted to the neurological service at Necker for her to be hospitalized. She stays a week because of her stiffness. Lyana’s whole body was sore so they applied a treatment to relax her. The following months, Lyana starts to feel better She makes progress with her hands and manages to hold onto objects and bring it back to her mouth. She continues to have daily seizures, but they are less.
August 2024, Lyana manages to turn over for the first time on both sides. It is a very big victory because her stiffness prevents her from doing what she wants to do, but she manages it. On November 28, 2024, we have an appointment with an ophthalmologist because Lyana has bad eyesight. On the way back home, an epileptic crisis began. I have 30 minutes to drive and these crises usually last for 3 minutes. At 5 minutes past, Lyana is still in crisis. I call her father to prepare for emergency treatment. 30 minutes later, her dad takes Lyana and directly injects her with the emergency treatment. Nothing is working and the crisis does not stop. We take the car to go to our city hospital where Lyana will be taken care of. The hospital immediately gets in touch with the Necker hospital. She end up with 2 intravenous, 1 on each leg and a dozen different emergency treatments. Still, nothing is working. Lyana ends up in a drug resistant crisis. They eventually put her to sleep to stop everything. The crisis lasts for 2 hours and 30 minutes. We thought we lost her for good. We feel so powerless.
Lyana ends up transferred to the hospital of Garches. Necker gave the all the instructions to follow. Lyana sleeps for 5 days. No doctors can tell us when and how she will wake up. But when she does, at her alarm we are transferred to Necker.
An MRI was done and we are told that the big crisis has created a small link at the central level of the brain. Lyana scared everyone. In the next week, the genetic results finally arrive. We are summoned with the geneticists and professors where her mutation of the GRIA4 gene is finally diagnosed at 14 months of age. We are told that it is a rare disease that affects 1% of the population. Lyana is the only French girl diagnosed.
They can’t tell us if Lyana will talk or walk. I’ve been crying so much all year long that the diagnosis didn’t make me any sadder. I expected it, we were ready to hear it. Lyana has completely lost what she had acquired with her hands, but now she finally has good treatments to fight the symptoms of her disease.
-her epilepsy
-her constipation
-her stiffness
Now, Lyana is not the same anymore. She has her routine these days and 2 days a week she goes to the nursery. Our princess eats very well and she manages to keep her pacifier turns on both sides. She stays on the floor for hours and she loves being in her custom bike. She will soon be sitting alone. Her stiffness is nowhere near as bad as it was and though her progress with her hands did not come back, but we have hope! We love hearing her laugh. It’s a ray of sunshine. We can finally go out to walk and go to friends homes down the road. Lyana is beautiful. She does sleep all night since 6 months old from 8 o’clock in the evening to 8 o’clock in the morning.
Lyana is surrounded by love. Our daughter will be our lifelong fight and we know she will surprise us. It’s been 3 months that she has not had any crises. Lyana is victorius!
The days go by and I resume my work of hairdressing. It is my grandmother who keeps Lyana during the day so that she is supervised. Lyana suffers and cries every day. I end up having to quit my job because Lyana’s seizures will not stop. Lyana usually has a crisis every day and it is sad to say, but it has become a habit. We always had to be very careful about how we wear her and how we put her down because as soon as we change places, she has tremors. We are so afraid to take our baby into our arms. We have to pick her up extremely gently because the slightest shake and Lyana will an absence seizure.
The following days, Lyana is 3 months old and her doctors tell us that they are worried about her development.
-Lyana doesn’t look us in the eye
-She doesn’t catch anything
-She does not present as a typical child
– She can’t keep her pacifier in her mouth
– She laughs only at sounds
-And she is severely constipated all the time
The Necker hospital puts a strategy in place very quickly the necessary to help her catch up. She goes into a structure called the CAMSP, where has sessions of psychomotricity. Months go by and he routine is very complicated, especially with Lyana always crying painfully and constantly These crises do not stop. On April 27, 2024, we start being very worried about Lyana. She screams with pain since she was three days old. We insisted to the neurological service at Necker for her to be hospitalized. She stays a week because of her stiffness. Lyana’s whole body was sore so they applied a treatment to relax her. The following months, Lyana starts to feel better She makes progress with her hands and manages to hold onto objects and bring it back to her mouth. She continues to have daily seizures, but they are less.
August 2024, Lyana manages to turn over for the first time on both sides. It is a very big victory because her stiffness prevents her from doing what she wants to do, but she manages it. On November 28, 2024, we have an appointment with an ophthalmologist because Lyana has bad eyesight. On the way back home, an epileptic crisis began. I have 30 minutes to drive and these crises usually last for 3 minutes. At 5 minutes past, Lyana is still in crisis. I call her father to prepare for emergency treatment. 30 minutes later, her dad takes Lyana and directly injects her with the emergency treatment. Nothing is working and the crisis does not stop. We take the car to go to our city hospital where Lyana will be taken care of. The hospital immediately gets in touch with the Necker hospital. She end up with 2 intravenous, 1 on each leg and a dozen different emergency treatments. Still, nothing is working. Lyana ends up in a drug resistant crisis. They eventually put her to sleep to stop everything. The crisis lasts for 2 hours and 30 minutes. We thought we lost her for good. We feel so powerless.
Lyana ends up transferred to the hospital of Garches. Necker gave the all the instructions to follow. Lyana sleeps for 5 days. No doctors can tell us when and how she will wake up. But when she does, at her alarm we are transferred to Necker.
An MRI was done and we are told that the big crisis has created a small link at the central level of the brain. Lyana scared everyone. In the next week, the genetic results finally arrive. We are summoned with the geneticists and professors where her mutation of the GRIA4 gene is finally diagnosed at 14 months of age. We are told that it is a rare disease that affects 1% of the population. Lyana is the only French girl diagnosed.
They can’t tell us if Lyana will talk or walk. I’ve been crying so much all year long that the diagnosis didn’t make me any sadder. I expected it, we were ready to hear it. Lyana has completely lost what she had acquired with her hands, but now she finally has good treatments to fight the symptoms of her disease.
-her epilepsy
-her constipation
-her stiffness
Now, Lyana is not the same anymore. She has her routine these days and 2 days a week she goes to the nursery. Our princess eats very well and she manages to keep her pacifier turns on both sides. She stays on the floor for hours and she loves being in her custom bike. She will soon be sitting alone. Her stiffness is nowhere near as bad as it was and though her progress with her hands did not come back, but we have hope! We love hearing her laugh. It’s a ray of sunshine. We can finally go out to walk and go to friends homes down the road. Lyana is beautiful. She does sleep all night since 6 months old from 8 o’clock in the evening to 8 o’clock in the morning.
Lyana is surrounded by love. Our daughter will be our lifelong fight and we know she will surprise us. It’s been 3 months that she has not had any crises. Lyana is victorius!
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