On Thursday Joshua had a 24 hour EEG. We’ve been pushing for this for a while because the normal 1 to 2 hour EEG’s haven’t shown anything and we were really starting to believe that Joshua was having seizures. On Friday we got the results. I was at the hospital with Isabelle and my parents when the nurse informed us that the results were back and she would arrange for the doctors to come and discuss them with us. Alarm bells immediately started to ring. Why couldn’t she tell us the result, unless it’s bad news.
After a short time a PICU doctor came to us and informed us that the EEG had shown some seizure activity and that these seizure originated in different parts of the brain and were consistent with a condition called Migrating Partial Seizures of Infancy. I had no idea what this condition was, or how serious it is. He told us that there is a genetic test that they can do to confirm the diagnosis and that they would take the necessary bloods on Monday and that it would take a few weeks for the results to come back. When he left I immediately Googled the condition. I tried to hold it together because Isabelle was with me, but couldn’t shake the words that I was reading.
“Because of the serious health problems caused by MMPSI, many affected individuals do not survive past infancy or early childhood.”
My parents kept asking what the doctor had said but I couldn’t talk without bursting into tears. We were going to lose him and there’s nothing anyone can do about it.
A short time later the neuro registrar came to discuss the EEG results. He also told us about the seizures, but when I asked him about MMPSI he said that while it was a possibility, he thought that there are other “less serious” conditions that Joshua might have and that the test they are performing on Monday would test for a wide variety of genetic epilepsy syndromes with varying outcomes. He also dropped the bombshell that this test would take 5 to 6 months to come back! How the hell are we gonna live with this uncertainly for the next 5 to 6 months?!?!
Laura called to ask how Joshua was and I had to try to explain to her what was happening. The hardest conversation I have ever had. How do you tell your wife that your child potentially has an incurable form of epilepsy that will eventually kill him in childhood, but that we wont know for sure for another 6 months? I remember us both crying a lot that evening and night back home. So many questions, so much uncertainty and what do we tell Isabelle? How can we get through this? And why do we get such different information from the doctors? Don’t they talk to each other before talking to us?
The following day came with more confusion. The neuro consultant came to see me to discuss the EEG results and the next steps. Again he suggested that in his opinion it probably wasn’t MMPSI, but some other less severe genetic epilepsy. He did say that whatever it was there would probably be some level of developmental delay, but not to focus on the future, only to enjoy the time we have with Joshua now. To me that sounded like doctor speak for “He’s probably not going to survive this so make the most of the time you have”. Following that we got a visit from a PICU consultant who told us that the thinking is that Joshua has MMPSI and that they were going to test for it on Monday. At least they all agreed on the day of the test! I mean what the fuck! How can we have such different discussions with the doctors? Don’t they talk to each other? Do they thinks it’s MMPSI or not? I’m not sure if the neuro doctors are just going soft and don’t want us worrying about losing him for the next 6 months, or if the PICU doctors just don’t know the score, or are preparing us for bad news. I’m frustrated and angry but most of all scared. The future for all of us is out of my control. There’s nothing I can do but be there for him, Laura and Isabelle. This is so hard.