"My sons care through neurology treating epilepsy"
About: Queen's Medical Centre Queen's Medical Centre Nottingham NG7 2UH
Posted by Neil maxwell
My son has a form of epilepsy called west syndrome or infant spasms. These were first thought yo be myclonic. But after an EEG with the hospital the west syndrome was diagnosed. The neurology department at the beginning was very helpfull and supportive especially the lead doctor. We were told it may take some time to get my son on the correct type of drug and the correct amount which would change as he got older. We thought we had cracked it until just recently, when the spasams started to cone back. We obviously informed the department as soon as we could. This alone was hard enough on one occasion as all nurses and dr secretary were on holiday at the same time! It was just over two weeks before we got a reply to bring my son in for another EEG. We have just had a call from the neurology department today over 3 weeks after his EEG!!!! Explaining that the west syndrome has come back. But the doctor looking after my son is not available to see my son for another 6 days. My main point is that this is a debilitating form of epilepsy and my son starts to forget what he's learnt when we let the spasams continue without the correct treatment!!!!! Why does it take a doctor 3 weeks to diagnose the epilepsy. I'm under the impression that it takes that long to be put in front of the doctor to look at. I honestly believe this cannot be the norm or correct way to deal with such a horrible syndrome. Also on the last few occasions we have chased them after 3 weeks and only then did someone get back to us!!!!!