Introducing this week’s Warrior, the awesome Dante, as told by his Mum Jess
On the 31st May 2017 we welcomed our beautiful little man Dante to the world. He weighed 7lbs 11oz, was born at 38+5 and we had a normal vaginal delivery that went very smoothly. Up until the seizures started he seemed completely normal with no developmental delay and he has remained that way.
One night in in late August my partner got up to do a night feed. In the morning he told me that Dante had been making funny movements while feeding. We dismissed it as nothing serious. The following night when I fed him I noticed something too but it was very subtle. The following day (22nd August) when he was sat on my mother’s lap after waking from a nap she laughingly told us he was very strong as he kept trying to “sit up” on her knee. She then put him in his rocking chair and that was the first time I actually registered that he was having a seizure as it was broad daylight and I was looking directly at him. His head dropped and his eyes rolled back, his upper body flew forward, his arms flew out to the sides and his knees pulled up to his tummy. It lasted maybe 2/3 seconds and then stopped however it repeated every 10ish seconds and the whole thing lasted about 2 minutes. It was enough to send me straight up to A&E, my partner wanted to come too but sadly someone had to stay and look after the other children. After waiting several hours he was finally seen by a Dr. Of course he didn’t “play ball” and there were no seizures at this point and his observations were all fine apart from a heart murmur. I described the seizure to several doctors and thankfully one of them decided to admit Dante to the ward for observation even though they had no idea what it was. The next day, as he has not had another seizure we were due to be discharged. I was starting to wonder myself if I had imagined it. The Dr told me to film a seizure if he has another and to come straight back to A&E. However… just as they were doing his discharge papers he had another. I called the nurse and proceeded to film him. So now at least someone had seen it. The nurse called a Dr to the ward. He saw the video and said that we would have to stay in. He said that he wanted one of his colleagues who was a paediatric epilepsy specialist to see him. Not long after the specialist arrived. He saw the video and ordered an eeg. He took Dante into a dark room and ran a lamp over his body looking for a specific condition (thankfully he didn’t have it).
Within a couple of hours we were getting the eeg done. Later that evening the specialist came back and told us that Dante was suffering from IS. The eeg was inconclusive however and we would need a longer one the next day that included a period of time where he would be sleeping. Metabolic blood tests were then taken. The eeg results next day confirmed IS, the report said “modified hypsarrhythmia. He even had a seizure upon waking during the eeg. Following this, we were in hospital for a week. My partner and I took turns staying with him. He was started immediately on prednisolone (40mg a day to start with) and he needed an MRI and Lumbar Puncture. The prednisolone initially stopped the seizures within 2/3 days. We cut down from 40mg to 30 to 20 and then to 10. Unfortunately at 10mg he had a relapse and seizures started again although they were different this time, instead of full body spasms his head was thrown back and his eyes rolled back to the right. They were also very subtle. We took him immediately to the Dr who put his dose back up to 20mg (this was on a Friday). This initially didn’t work so he was readmitted to hospital on Sunday after several seizures in quick succession where he had another eeg. The new eeg showed no hypsarrhythmia and no signs of IS which was great news.
On the following Wednesday he went back to clinic and his Dr put him on Epilim liquid along with the 20mg of prednisolone with the view of starting the steroid wean again in the near future. (This is where we are at now). This has seemed to do the trick as he is currently seizure free again. The steroid treatment is very hard on all of us. Our happy, little man became very grumpy and hungry constantly. His cheeks have grown large and have thread veins on them and he sleeps very poorly and requires further medication to settle him at night. He is often fussy. He is also on medication for his stomach and blood pressure (which was raised by the steroids). We consider ourselves “unlucky but lucky”. Dante was diagnosed pretty much as soon as the seizures began because we saw the right doctors at the right time, which meant the drugs got a good chance to hit the epilepsy where it hurts right off the bat.
Dante has not as of yet showed any signs of any developmental delay and we have hope that it will carry on that way. The tests have all come back and there has been no obvious cause found that explains Dante’s epilepsy. And that is his story to date. Let’s hope that he continues to successfully fight off this awful condition like the little warrior that he is.