My 1 year old is having a hard time developing

I have a 1 year old who was born with a small brain bleed that has seemed to have corrected itself.  She had a seizure the day she was born which turned her black.  We spent a week in a NICU and no other problems were found.  At about 4 months old she started having infantile spasma and we did a round of ATHCAR shots which have done away with IS but she is now having a different type of seizure (which we are waiting on a dx from her neurologist).  She has a floppy trunk, head and legs.  She has just recently started tracking with her eyes and responding to noises.  She does not hold her head up, turn over, or sit on her own.  After her last MRI they found myelination delay....my question is could this possible be causing her to scream in pain for 30 minutes at a time as many as 6 times a day?  I am at the end of my patience with drs who do not explain anything and do not think that this is a problem.  After a 4 day stay in our local pediatric hospital having MRI, VEEG, and abdominal ultrasound done we were told she was a mystery and they could not help with the pain cause they didn't know what was wrong with her.  Any help is appreciated.

[rumpled]

This may sound odd, but there was a mystery diagnosis show that sounded very similar to this. It was a genetic disorder that caused the child pain until he/she was treated and the child was very sick as a baby. Have you seen a geneticist? Just an idea.

[pdolivo]

Funny you mention that...her Pediatrician just mentioned us going to one and they are working on an appointment as we speak.  Thanks