It's not that Id ever choose to get off this rollercoaster we are on, but sometimes I wish it wasn't always big dips and so damn scary.
So in my last post, I said that Hope has started having seizures, and that we were waiting for an EEG. Well 2 weeks had passed and still no EEG. The seizures escalated, and were becoming stronger. We went from having zero, to 121 on Wednesday 17th June, so on Thursday morning by 9.05 she'd had 36, of which some were really strong and causing Hope to hold her breath and go red in the face, so I decided to call the hospital. In our last visit with Dr.Z he'd said he'd arrange 'open access' so we could just ring the unit and let them know I was bringing her in. Much to my amazement, access was denied. Dr Z hadn't arranged access. Nor had he arranged an EEG-still. He said 'we need to rule out that these episodes are not colic or reflux'. AS IF I'D CONFUSE SEIZURES FOR COLIC! Anyway, he said he would arranged access.
Over the weekend Hope had 200+ seizures each day. Her little personality seemed to have almost vanished too. No smiles, or laughs, not even turning her head to my voice, pretty much like a newborn again. On Monday, Hope was due at the hospital for some bloodtests, but I knew that I wasn't leaving until I'd had her seen, until someone listened to me and took my concerns seriously. I asked to see Dr. Ch. The frosty nurse said he probably wouldn't be able to just come and see us, but my thinking was aim high (he's the paediatric neurologist), but I'd have settled with her at least being seen.Dr Ch agreed to come and see Hope, though I did have to wait a couple of hours because he was in a clinic in another hospital. He was worth the wait. He took us into a little room, and listened to me through my tears. He said 'please don't cry Mum'. He even offered me a cup of tea. He then watched intently the video recording of Hope's seizures. Of course, doctors are busy people; he had a meeting, but promised to come back in half hour, telling me to go and get something to eat and apologising for keeping us waiting around.When we met the next time, he'd arranged an EEG-just like that.The same day. Straight away! Hope had 23 electrodes stuck to her head for 20 minutes, and I watched the machine scribble across the paper. CHAOS! Not how a normal EEG should look. I knew that.Dr Ch collected us from the EEG and walked us to his consulting room where he broke the news. Well that's not strictly true; he said 'very abnormal brain activity, abnormal EEG'.'Epilepsy?' I asked.'You took the words from me Mum'.I think he's probably used to parents sobbing at this news, i was gutted, but this wasn't really new news to me. I knew. He confirmed. I felt slightly relieved in a way- that I'd been heard.We talked about the prognosis, the fact that Hope's epilepsy is severe, the fact that the seizues will likely evolve over time, that it's difficult to give the right meds to one so young and small... he asked me if I had a medical background-lol. Then told me I was well read. A compliment of sorts I guess, but I see knowledge as power, and am not a subscriber to the 'ignorance is bliss' way of thinking.
Vigabatrin seemed the best drug option for her; despite the fact in causes visual impairment in 40% of those who take it, but this is better than further regression, constant seizures and brain damage caused by them. Dr Ch, then took me to meet his secretary, who I could call anytime and he'd call me back within an hour. He handed me some leaflets, and aftter a very long day we left the hospital. NUMB!We began the meds the next day. As I read all the listed side effects, and the fact that I could not dispose of the medicine through the household water supply, I feared giving Hope her first dose.Apart from sleeping 23 hours out of 24, she seemed ok. The seizues had pretty much stopped, but at a high cost. Concerned that Hope wasn't even feeding enough I called Dr Ch. We went to see him the next day and decided to reduce the dose, and build her up gradually on it.Though we are yet to have a seizure free day, they are much less frequent, and to the untrained eye, not even noticable. And I am getting her back again. Yes she's delayed. She went back to newborn state, but she's smiling again, looking at me, laughing a little. We're working on the rest! We have also seen an ophthalmologist who confirmed that she is visually impaired, but to what extent is not clear.Nor is this necessarily permanent.
Ugh. Bad day.
4 days ago