Baby with infantile spasms + abnormal MRI and EEG

Good evening

I’ve been following this subreddit for quite a while to find answers and success stories. English isn’t my first language, so please excuse me if I make any mistakes. For context, we don’t live in the US.

As the title indicates, the baby in question is my nephew, who is 5 months old. His mom had complications while giving birth to him. She was in labor for about 25 hours, and when the baby was delivered, he had seizures and a lack of oxygen reaching his brain.
He remained in neonatal care for 11 days and was given Gardenal to stop his seizures before being discharged.

He had a head scan after that, which showed some abnormalities in certain areas of the brain and a slight hemorrhage, which we were told would dissolve over time.

At around 2 months old, his mom noticed some unusual movements but wasn’t sure if they were spasms because he’s her first baby, and he’s also the first grandchild in our family, so none of us were familiar with signs of anything abnormal. At the time, he was also experiencing stomach discomfort due to the milk he was taking. These movements were later confirmed to be spasms.

Fast forward, he had an MRI, which showed abnormalities in some parts of his brain. When he was taken to the pediatrician again, he was prescribed Baclofen and Depakine to stop the spasms and help him relax.

He’s still undiagnosed, and we don’t know exactly what the condition is. We suspected West Syndrome, but an EEG showed arrhythmic signals, and the pediatrician said it’s not likely to be that and that it could be something else. Now, he’s started another medication called Sabril (Vigabatrin) to stop the seizures. This one scares me the most because of its serious side effects.

I want to hear from people who have had similar experiences. I’ve been reading posts here for a while to find success stories, but most mention their baby’s MRI was clean or their EEG didn’t show anything.

Please share your experiences. I will read all your comments attentively. My family and I are in desperate need of hope. Thank you.