AIBU to expect more from NHS for my 10 month old

[fashu]

DS2 was diagnosed with Epilepsy beginning of Feb this year. He was 7 months old.
He's been put on Keppra and later Pyridoxine.
He has had around 25 full tonic clonic seizures in this time I've suspected daily absence seizures and focal seizures.
Originally he would have one seizure once every 10 days now he has clusters where he will have 3/4 tonic clonic seizures in a day for 3/4 days. These happen approximately every 2 weeks. His development seems unaffected but where he used to be ahead, he's kind of on target now so I feel like his development has slowed.
I try to contact his consultant every time but I am told the message has been passed on and then I have to chase for a few days just for a phonecall and all that happens is his medication is increased. I've told them I don't think the medication is working. He's had an 3 EEG's and a CT but we are waiting for an MRI. Everything clear so far. I've asked for EEG or 24 hour EEG during his clusters but haven't heard back.
We've never been given an appointment with the epilepsy nurses or a proper follow up and I just wanted to know if I'm being pushy asking for more monitoring and more investigation.
I know the NHS is so busy but my son is only 10 months and it's seriously affecting his day to day life as my mental health. My dad has said epilepsy is something that takes time to diagnose but I just feel helpless.

I don't know anything about it but I can certainly understand why you're worried. Have you tried speaking to Eplipsy UK? They may have advise and support?

I'd contact an epilepsy organisation, they'll be able to inform you better as to what the procedure should be and then I'd complain to pals about the lack of care.

Does he have to have blood tests to check the levels? Our DD had absence seizures from the age of about 18 months.
She had to have bloods done two monthly.
We were abroad

Hes had his bloods taken once whilst he was an inpatient originally but he's never had any since and we've never had the results.
I've been online and found we are very close to a very good hospital with a great epilepsy department, I've called them and they said my GP can refer us but GP is away now until Tuesday for Easter holidays.