My name is Audrey and I’m writing my 6-year-old son Sean’s story. Sean was a happy healthy, active child. He had mild asthma and has autism – nothing which would have any link to his current injury.
As a mother, I decided to get Sean vaccinated because we needed to move back to Ireland. It’s complicated, but I need to be with my family as I’m all alone here. My other son who is nine also has a rare disease called Hirschsprung and according to the narrative and the Government’s advice, he was at risk. So at the end of the day I decided for all of us to be protected and back where we needed to be, that we should all get the vaccine. I never thought in a million years that I’d be sitting here telling this story, but boy was I wrong.
Sean got the Pfizer jab on Friday 4 February 2022. That night he was complaining of a headache, and he was unsettled so we gave him some Panadol and he went off to sleep.
The next day (Saturday) he was extremely lethargic and not his usual self and had more headaches. We didn’t really think much of it at this point, and I thought he was anxious about school because he was just starting. The next day (Sunday) he had bit of diarrhoea and the same headaches, and his lethargy continued. At this stage it crossed my mind that he did just have the vaccine, but because he was presenting a ‘commonly known’ side effect I wasn’t too alarmed at the time.
On Monday Sean went to school for the first day of Year 1 and he came home lethargic again with headaches. This is when I started to ask more questions. Sean had never had headaches before. That night he awoke upset and unwell for three hours, we just couldn’t get him to sleep.
On Tuesday Sean took a turn for the worse. He had a temperature and sore arm pits (lymph nodes), and he started vomiting, so we called Health Direct. I said that I thought it might be a reaction to the vaccine and they told me to take him to ED. When we arrived, the first thing I did was notify the nurses that I thought my son was having an adverse reaction to the vaccine. He was monitored for a few hours and then discharged with a diagnosis of gastro. They told us to keep on doing what we were doing and to give him Panadol and keep the fluids up, and if he wasn’t better in five days’ time to come back.
Upon arriving back home on Wednesday morning, Sean continued to vomit all day long with all the other symptoms mentioned above. On Thursday the same symptoms were occurring but this time his arm pits were noticeably swollen so I contacted the hospital to tell them what was happening. They told me to go into a walk-in clinic because they were so busy. Once we got to the doctor, he completely dismissed us and treated me like I was stupid to even think that this was a reaction to the vaccine. The doctor treated Sean with nasal spray and said he was vomiting because of the sinus and the snot in the back of his throat along with gastro, but that was it. I was a bit worried about his dehydration but the doctor said he looked fine.
On Friday nothing had improved, and his temperature rose to 42 degrees Celsius. I was doing all the things that the doctor told us to do (treating Sean for gastro) and I couldn’t get his temperature down. Even though Sean was experiencing much discomfort, he was so lethargic that he was bedridden and sleeping through it all. This continued through to Sunday morning when we noticed he was starting to break out in a rash, his ear lobes were swelling and he was telling me he couldn’t hear properly so we returned to ED.
When I got in there, I made it clear we weren’t going anywhere unless we got some proper testing. I was telling them, ‘This is not gastro! This is a reaction the vaccine’. They ran bloods, heart trace, and a urine sample. As they were just about to admit him, the results came back clear and the paediatrician said he was all good and could go home. They even tried to stop the nurses from doing further observations and I interrupted saying, ‘No you have to check his temperature at least’. They tested his temperature, and it was 37.8 degrees Celsius, and they still sent us home.
We got home about 6:30pm and we put him to bed by 7:45pm. Something got to me, and I decided to walk back into his room 10 minutes later to find Sean having a severe seizure in his bed. He was gone. Half of his body was soft, and the other half was clenched stiff. His eyes were rolling back in his head and he was foaming at the mouth. We called 000 and the ambulance came in about 15 minutes. Thankfully Sean’s seizure only lasted 5 minutes and he came back to us before the ambulance arrived, however the left side of his face was droopy and his speech was slurred, he couldn’t walk properly either and was dragging his left foot.
We arrived at the hospital and had to wait just like all the other patients. At this stage I was starting to feel angry. While we were waiting his face started twitching and he kept saying he couldn’t hear properly. His hands were tremoring, and he started having another seizure. It got to the point where I literally had to scream at them to do something.
While he was having a fit for 15 minutes they moved him into another room where they tried to put in a catheter at least 15 times, they couldn’t get it in because of how dehydrated he was which was something I had brought to the attention of doctors over the many past visits. They were holding him down two people per limb while he was screaming and kicking in pain. I literally had to scream at them to stop and two of the nurses were backing me up to stop the paediatrician from continuing.
It was all a bit of a blur, and we were transferred to the main children’s hospital where we started to get slightly better treatment. On arrival Sean started twitching again. I was starting to be able to predict that a seizure was coming and I was right, this time it went on for 40 minutes straight and once again he was gone, like he had left his body, his eyes just staring off without blinking the entire time. For another 45 minutes afterwards he was basically unconscious. I was just praying and begging, I thought that my son was dying. I thought that was it.
They were about to put him on a ventilator, and they managed to get a catheter in while he was mid seizure. They said Sean could hear me, so I then yelled at Sean to come back, as a last resort, and he came back. He opened his eyes and looked at me.
Over the next 30 hours he had a lumber puncture, MRI, CT, bloods, and an infectious control team came down to investigate. All the tests that had been done came back clear. They didn’t find one single negative marker. I was telling them that it was the vaccine and they weren’t outright denying it, but they couldn’t give me a straight answer, because they were ‘still investigating’.
16 days later I’m still in hospital by Sean’s side every single night. What we have experienced up to now has been nothing short of a nightmare, and all the while my other son, who I have in full time care, is due for an operation next week. So I will now potentially have two sons in hospital at the same time.
Since being here Sean has forgotten how to eat, he has forgotten who I am at times and thinks I’m trying to attack him. Sometimes he thinks he is dead. I’ve seen him deteriorate so badly that his fine motor skills and speech have all disappeared, it’s like he’s a two-year-old again. His behaviour is not like my son, it’s like he has five different personalities. He’s still vomiting, and getting headaches and red rashes.
Sean hasn’t been officially diagnosed but they are clinically treating him as someone with limbic encephalitis because of how he presents, but the tests do not back this up. Everyone is still left scratching their heads.
Sean is slowly improving with a long list of meds but with every step forward there’s always a step back and even though he’s being looked after here in the hospital, I know this will come to an end and there will then be a lot of aftercare for a very long time to come.