This past week we’ve been waiting patiently as Doctors have been running tests and imaging in order to try and figure out the cause of Bronson’s seizures.
This is what we have been told by each of the different doctors:
Neurologists – They did an EEG and it was normal. Even though Bronson was started on phenobarbital (anti-seizure med) if he did have epilepsy, or any other neurological disorder, there would have been unusual results. They would like to do a longer EEG this coming week with video recording to try and capture both the brain waves and a visual of what happens when he has a seizure.
Oncologists – From a CT done on Wednesday it showed a change to Bronson’s bone density in his skull. Although the CT showed no trace of a brain tumor they were wondering if the neuroblastoma, even though one of his markers are normal and the other almost normal, had spread to his bones. Bronson had a MIBG Scan done on Friday and it showed that there was NO evidence of neuroblastoma in the bones! Thank goodness!
Liver Transplant Dr’s – From what the CT scan that was done on Wednesday showed they told us they think he has Posterior Reversible Encephalopathy Syndrome (PRES), which is swelling of the brain. However, it IS reversible…so that’s a good thing! Bronson had an MRI done on Thursday to confirm the diagnosis of this, but I still haven’t heard from the Doctors if this is what he has for sure or not. It can be caused from different medical treatments from cancer and/or transplant, both of which he has had.
We always get stuck with Bronson getting tests done on a Thursday or Friday and then we have to wait until Monday to get the results. At least they were kind enough to tell us on Friday that the cancer had NOT spread to his bones! I would have been furious if we had to wait all weekend for those test results! So, to me, it sounds like the doctors are leaning more towards PRES as a diagnosis.
On the bright side of things Bronson was moved out of the step down unit and into his own room! That means he’s stable and no longer requires one on one care from a nurse. It also means that now I have to be at the hospital a lot more in order to help with care. All of the rooms on the floor are private ones and have a place for a parent to sleep and a private bathroom with a shower. So, tomorrow I will be heading up to stay with him… hopefully, this also means that he will be able to come home soon!! I don’t think that 2 weeks would be an unreasonable time frame…. I wonder if the Dr’s would agree with me!?