"Infantile spasms"

We came to Perth children's hospital with possible infantile spasms with my infant baby, the first time was all very quick got an eeg next day which came back clear they were quick to say benign.

After my baby got worse a week later brought them back to emergency this time I felt I was met with zero care and many comments how first eeg was clear so they felt no need for further testing, they didn't even watch the many videos I took of my baby’s spasms.

I pushed and pushed to finally get another eeg and put on the list for mri (still waiting for appointment), urine and blood tests including genetics testing.

2nd eeg was clear and they were still confident that they were benign even though I was sure it wasn't as my baby was not themself and having around 30 plus spasms a day and they were getting worse but decided to wait for further testing and follow up appointment was made in 2 weeks.

Fast forward to follow up appointment and us really establishing that these spasms were still getting worse and my baby really wasn't themself at all they still were confident it's benign but will give meds to see, we were told if the meds help then that tells them its some sort of epilepsy/seizure and if they don't work then it's benign, but these meds are just bridging meds and would have to be put on frontline meds.

The meds worked my baby is having significantly less spasms, I emailed the hospital like they asked me to do also asking for longer EEG as i have heard they're more accurate and after almost a week have received an email saying no urgency for eeg and will follow up in 2 months.

This astound's me as my baby’s still having spasms should we not be trying to get them on the right meds asap to stop these spasms and trying to get to the bottom of this! And a sooner appointment to discuss with me what this means officially so I'm not left wondering?

I feel the treatment has been horrible and I have been beside myself for the last month trying to advocate for my baby with drs who I feel have not cared in the slightest and just wanted to be rid of us.

I believe if I hadn't pushed as hard as I did we wouldn't have gotten to the point of finding out it is seizures of some kind.