Our UKIST warrior for July is Lola, her story is told by her mum, Lisa.
On 8th May 2020 we were joining in our our street party for VE day and Lola at 7 months old was not settling to sleep, which was unusual as she loved her sleep. We noticed as she was finally nodding off she did a jerky movement (we felt it was like when you fall asleep and startle yourself awake) but then went to sleep ok. To add to this Lola was teething and we could not settle her. A few days later she did this weird movement again on waking up.
On Saturday 23rd May Lola had a few of these movements together and we took her to A&E. The doctor we saw told me I was not giving her enough Calpol and the spasms were from her being in too much pain. I felt like a terrible mother that I had let this happen. So we went home and started to give her more Calpol.
Lola kept having these weird movements and something didn’t feel right.
On Monday 25th I rang the health visitor for advice, I didn’t know what to call these jerky movements and struggled to explain what they were. The health visitor told me to call the doctor ASAP. So we phoned the doctor and they said to monitor the movements for 24 hours, I did stress this is what we had already been doing.
By lunchtime Lola had a cluster of these movements so I rang the doctors again, the receptionist advised us to ring for an ambulance. When we arrived at the hospital Lola had no movements there and I showed the videos I had accumulated by this point to the doctor, we were told to use ibuprofen also with Calpol and sent home.
Feeling like a failure that I was the one who was making my daughter go through this by not giving her enough pain relief, I looked out for support. Late at night I typed Lola’s symptoms into Google … and found a video of a little boy doing the same movements as Lola did, reading the write up that went with this made me feel sick, the prognosis on this site was not good. I said to my husband if Lola did another spasm we are going to A&E, literally 1 minute later Lola had a spasm and we were in the car on our way. My son who was 11 at the time was woken to come with us too.
Due to covid only one person could go in, my husband was isolating so it was down to me, and I felt so much pressure to get it right with everything that had already gone on.
We were triaged by two nurses, one of whom was a trainee. As soon as I said I think it could be spasms and I forgot the infantile bit, the trainee said infantile spasms and that she had read about it recently in her training.
The nurse agreed that looking at my videos it looks like it could be that. As soon as we saw the doctor she agreed also, I felt so relieved we were getting somewhere. I rang my husband who was waiting in the car nearby as we were expecting to be sent home again, I said for him to go home as we were being admitted.
Lola had bloods, cannula put in and covid tested and we were admitted on to the ward. The first nurse we saw said to me there isn’t much point in ringing the bell when Lola had a spasm as by the time they would arrive it would have stopped. I felt so alone.
Follow on to the next morning the lead nurse came in and asked if she had had any spasms and I said she had a lot throughout the night and she was appalled that I hadn’t called for the nurses. I broke down and explained I was told not to. She apologized and said that’s not what we do, Lola was weighed and she arranged for our first meeting with the specialist in neurology later in the day.
The doctor came in and explained that he is sure that it is infantile spasms as this is how to be accurate to how to treat. He also explained of lots of other conditions that it could be and we needed to complete tests to eliminate the possibility of it being these, stupidly I googled some of these and felt numb. He explained Lola needed an MRI, lumbar puncture, blood tests and lots of other scans.
Lola had an EEG which in the middle of a heatwave in a hot hospital room on a sweaty angry baby was tough, it was only half completed but enough to show that Lola did have infantile spasms, in one hand I felt heartbroken and in another I felt elated we had a diagnosis. The specialist asked if Lola had any regression with her development and thinking about it Lola had got a lot more wobbly in sitting up and was more mute compared to her babbling, yet again couldn’t believe I had missed this being a symptom.
When discussing what medication for Lola to have, I was told Lola could go on prednisolone (steroids) but would suppress her immune system and in a covid situation would not be ideal. I did ask what would be the best treatment and was told a combination of steroids and vigabatrin. We had already been isolating at home so I could ensure we could do this further to keep Lola safe whilst on this.
Lola started the medication on the Friday afternoon, it was tough to get her to keep it all down. As I had been keeping a log of the spasms that Lola was having, she had a cluster at 1.31am on the Saturday morning and this was her last!
As soon as Lola started the steroids she had this incredible hunger that I felt she was just having bottle after bottle!
We were allowed home a week after being admitted with a bag full of meds. We were advised to not expect a quick recovery, not to expect too much in development and to be ready for a relapse.
Each reduction in medication brought a new level of anxiety of a relapse but Lola carried on.
Lola was medication free from September.
The one thing that has kept me going Is the support I have received from the UKIST Facebook group. When Lola was initially diagnosed I found the group online and in particular a picture of a little girl which was posted that day and her mum was celebrating her being a year seizure free. I kept this post so close and can’t remember the times I read it over and over hoping that we would have the same outcome.
Lola is now 18 months, she goes to nursery once a week and loves life. Lola is fiercely independent and knows what she wants, with all she has been through she is amazing.
Lean on others in the group for support, no one else knows or feels how lost you are at the beginning of this x