She had her fourth seizure on Sunday, and it was a very frightening one. For about a month I have noticed small changes in her behaviour, but it has been challenging to speak to Prof Lamb. He is double booked and fully booked until the end of time.
Late Monday he came back to me. He sent us for an EEG yesterday in Pretoria. Fighting the G20 traffic was insane yesterday. Lia had to be lightly sedated so the EEG could record her brain activity while she was sleeping. When the results came back, I felt the breath leave my chest. Her HIPPS has returned. And the moment he said it, all the symptoms finally made sense.
HIPPS refers to hypsarrhythmia, a very chaotic pattern on an EEG that is linked to a severe form of epilepsy in infants called infantile spasms, also known as West syndrome. If you search it, the symptoms will match what we have been seeing.
He is treating it very aggressively with a combination of medicines. One of them is a very high level of cortisone. We return in two weeks for a repeat EEG and another appointment. Topamax is the key medicine and she has started that too. The script included 7 different medications.
Lia is doing okay at the moment. Last night was not easy. She has small seizures in her sleep and then she cries, and every time it happens, we all wake up. It even happened while I was feeding her earlier, she would have these small shocks and then she’d cry. This has been happening for about three to four weeks now. I also need to stop the Rivitrol because it is causing too much congestion in her chest.
We are exhausted. You feel it in your bones, but it hits differently when your child’s doctor looks you in the eyes and tells you he can see it. It almost feels like a release, a strange kind of validation that what you are carrying inside is real. She is more calm now after the second dose of Topamax and I hope we can have a good night. I’m glad we caught this now before the silly season starts and I’m glad I listened to the voice in my head telling me something wasn’t right.
Thank you for the love and support.
L and L
