Discovering the epilepsy of Little Marcello

Hello everyone,

My name is Nivian Potella, I live in Venezuela and next to José Vivas we are the parents of a cute 16 month old: Marcello José Vivas Potella. Come and tell you your story ...

Marcello was born on October 8, 2020, in the midst of this Covid pandemic that we currently crossed, he knew how to be announced since he began to give himself the birth process since midnight of the previous day we were scheduled for Cesarean surgery. We are from those thousands of parents who could not receive their babies in the company of family and friends but alone and silently since safety standards due to Coronavirus do not allow it. The next day, we were discharged with a baby in completely healthy and suitable theory without any abnormality that caught care between doctors and less to these chief dads.

The days passed between laughter and sleepless nights, typical days of the first mothers and motherhood with their details until a night in which without knowing the reason, Marcello with 1 month and a half behaved strangely ... He was taking his milk on my chest when he suddenly felt that he loosened as dropping down, he released his chest, his little face turned serious and a little bluish, did not respond to the stimuli. I immediately seek help but when the nurse arrived, who lives near home and Marce had reacted and resumed his diet as if nothing had happened, this left us dismayed trying to give him some explanation. He approached the day of his appointment with pediatrician and at that interin it happened to him about 2 or 3 times more, I would not want to remember ... the doctor only tells us that it is spasm of sob and is given in children with a strong character, but How could that be if my marce had not been crying at those moments that they already had us for other worried,

December arrived and the photos. His uncle took him to photograph himself with him next to the tree, and my face of Mapamundi was 2 months old, and to want to return it to his crib, all, grandparents and uncles were still watching as Marce trembled now rigid with his flexed tips and bluish His wrinkled face ... from that moment, the episodes were increasingly followed and many times a day. The second pediatrician that we consulted also gave us light on what was happening and mentioned the same thing: spasm of sob, go that we could not see that this happened so often so we decided to consult a third pediatrician, who after a long Questionnaire indicated that Marce was having seizures ... That hit me in an unexpected way. Immediately, we resort by reference made, to the specialist who had to attend to him, a neuropediatrist. With 2 months, our baby began taking anticonvulsants and a series of medical visits. He was attended by a second neuropediatrist who indicated that she had pyridoxine deficit but we still had the doubt and that deafness of not knowing exactly what was happening to Marce. Due to the growth of it throughout the 2021 she touched several dose adjustments because the seizures became recurrent, in bursts and more frequently.

In the month of October, at the end of the year, we visited a third neuropediatrician who by applying a new electroencephalogram detected certain anomalies in their brain in the sleep phase so it ordered magnetic resonance. At this member, MARCE has had seizures almost month by month, so you have touched down medication that is leading us to reach the maximum limit of this medicine (sodium valproate) for patients of such a young age, so it probably amerit conjugation of Medications as indicated by your treating doctor.

We started the year with encouragement as we achieved with effort to carry out the orderly study. In our country, Venezuela, economic conditions make these analyzes very expensive but we achieved it, we made it thanks to many wills and that was very excited ...

Please support us to take him to the capital of our country, Caracas, where there is a specialized Epilepsy Clinic

This happiness was somewhat tarnished by the result of said MRI since it revealed an abnormality in the brain of our baby, according to his doctor Marce has a smaller brain than normal for a child his age (16 months), which is causing delay in her motor area, she does not walk and language delay, Marce still does not speak. Immediately, they referred us to speech and motor therapy since he is out of phase in his development presenting the language of a child under 11 months... Another blow to our peace!

Parallel to this we must carry out a series of laboratory tests to determine the origin: lactic acid, ferritin, transferrin, venous gases, ammonia, organic acids in urine, biotinidase, heavy metals, valproic acid levels to confirm or rule out the possible diagnosis.

Our anguish grows day by day, since every minute is crucial. We had hope in this MRI and yet there are doubts about it and its results due to an incorrect report from the radiologist and technical aspects of the study procedure. For this reason, we have decided to take this little boy to the capital of our country, Caracas, where there is a specialized Epilepsy Clinic (this has been his basic diagnosis) with teams and doctors trained to diagnose these cases of epilepsy in children more quickly. early. But at this time, and considering all the pertinent expenses, we have to resort to all the support of each one of you to obtain a part of the funds that allows us to cover appointments, electroencephalograms, MRIs and the series of laboratory tests that are derived. of this with costs reaching $3000. We have scheduled this for the month of March and I know that with the help of all of you and the favor of heaven we will achieve it... If you require support for this story, we are willing to present it.

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