Our son Théo was born on 21/05/2021. The delivery was spontaneous.
During his birth, Théo cried very little. My spouse spoke about it but the midwife did not take into account this remark. In our opinion, this was a 1st sign of hypotonia (weakness of the muscular tone).
Theo was born 3 1/2 weeks premature. The apgar test at 5 minutes was 10. He was placed in a heated bed; his birth weight was 2.320 kg.
We stayed in the hospital until 29/05/2021 for Theo to gain weight. At the very beginning, I had some difficulties with breastfeeding.
At the hospital, we were not informed at all about his hypotonia. After leaving the maternity ward, we had an appointment with our doctor who decided to do some additional tests because she noticed that Theo was not responding to certain stimuli. She made appointments for us to have an electroencephalogram (EEG) and an MRI. The EEG result showed no seizures and the MRI was normal.
On the evening of 06/27/2021, I noticed that Theo had some tremors, very brief jerks in his arms, which stopped as soon as I touched him. I thought of tremulations, quite frequent in the infants. I took videos because I was seeing the pediatrician the next day.
During my appointment with the pediatrician on the 28/06/2021, I showed her the videos and she immediately contacted the emergency room of the South Hospital of Rennes. In the emergency room, I learned that my son was having what we call convulsions without fever.
Our son will be hospitalized from 28/06 to 8/07. It was during this hospitalization that we were told about epilepsy and hypotonia. We had already heard about epilepsy for adults but never for children of Theo's age. As for hypotonia, this word was not part of our vocabulary. It was at this point that a battery of tests was performed. Blood tests were done as well as genetic analysis on Theo. To treat the epilepsy, the neuropediatricians prescribed an anti-epileptic.
While waiting for the results of the blood tests and to know if Theo did not have a metabolic disease, one must administer a certain number of vitamins to him. The EEG shows small peaks which indicate a cerebral activity not quite normal.
At the end of this first hospitalization, Theo was given an anticonvulsant and vitamins. Theo started physical therapy sessions, twice a week.
On 29/07/2021, Théo undergoes a lumbar puncture, which weakens him and awakens his disease. This lumbar puncture turns out to be unsuccessful, because it is only successful after the 3rd time and blood is mixed with the cerebrospinal fluid. At the end of this procedure, we notice that Theo has closed fists; he is apprehensive of anyone who touches him (even his parents).
On 5/08/2021, Theo had convulsions again and was re-hospitalized from 5/08 to 15/10/2021.
A series of EEG is done as well as another MRI which detects 3 abnormalities:
- Corpus callosum too thin
- White matter not very dense
- Diffuse brain composition (the 2 hemispheres are not distinct enough)
This corresponds during the EEG to a partly abnormal cerebral activity (visualization of small peaks).
To stop the convulsions, a new medication was put in place.
During this 2nd hospitalization, Théo had convulsions again following a nosocomial infection and a thrombosis. This made him very fragile and tired.
At the beginning of October, our son underwent a polygraphy: the results showed the necessity to have a NIV (non-invasive ventilation), during his nights. He is followed, during his nightly sleeps, by a scope, in order to record possible desaturations.
During this hospitalization, the geneticist came to see us to perform genetic tests on each of us since the tests on Theo were negative.
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In January after many failed epileptic drugs, Neyamiah's doctor decided she should try the ketogenetic diet as a last resort. It brought some improvement and we have managed to get most of Miah's seizures under control.
Miah still suffers from breakthrough seizures from time to time and faces many daily challenges. She is now 1 year of age and has not met any of her milestones. She is unable to hold up her head, grab and grip anything or sit by herself. She struggles to breathe if she is not in the right position and struggles with swallowing which exacerbates her breathing difficulties.
Despite all of these unfortunate events Neyamiah is a beautiful little girl full of smiles she loves kicking her legs and loves her toys. Neyamiah has brightened up our lives in so many ways.
We are so blessed to have her. We make the most of every single moment and take nothing for granted. She is our little warrior princess.