Focal seizures

Ethan was recovering slowly from the RSV. He remained a lot bluer and lethargic but was keen to have a couple of hours at school. The portable oxygen was set up, the bus arrived and all was well.

I got there at 11 to pick him up. On arrival Andrea, Ethan's teacher made comment about his facial twitching. There was a slight twitch at the side of his mouth which had been there all morning. As we stood there talking it got worse. It became a flickering of his face and he was absent. I rang the doctors and Ethan was readmitted to the kids hospital. We were told he would need to undergo some scans and tests to find the cause. Ethan had an MRI under a general anesthetic. It was a nervous wait but we were told the words we wanted to hear, "there is no tumor and there is no evidence of major stroke"

The next day the neurologist came to see us. "There is no evidence of any tumors or of a major stroke but it does show he has had a stroke in the past, and he will need to have EEG test to rule out epilepsy". This was at the front of my mind for a while but he was fine and there was no evidence of any more seizures, purely symptomatic to being so unwell the few weeks prior, so it quickly moved to the back of my mind and his cardiac function resumed front position.

He was getting back into school. A half day here and there, a full day Friday. The weekend to recover and a full day Monday was the plan. All was good. He was at school on Monday when his oxygen levels dropped. The school nurse recorded them at 60%. From there he has deteriorated requiring oxygen full time and at higher rates. I diagnosed pneumonia and rang his respiratory doctor with a request that I increase his oral antibiotics, give him oxygen full time at home, give him chest physio a few times a day, get an xray at his cardiac appointment and we stay home. This was agreed to but he also said he can arrange an admission if needed.

We had the cardiac appointment yesterday. A chest xray was done and yes he has pneumonia. The plan is to keep managing him at home and a review in 2 weeks. We are now facing the dilemma of delaying surgery. I tried to tell them after the RSV that he would get pneumonia before surgery. They like it to be 6 weeks after a chest problem before cardiac surgery but Ethan will not go 6 weeks!

The other issue we are faced with is that since his oxygen levels are lower (65% with 2litres of oxygen) he has had another 4 seizures. They were all small but they happened. It seems they are linked to hypoxia. We are able to increase the oxygen while he is unwell to help reduce them but we were warned its not good for his lungs!!

Jo