We arrived at Neurogen last night. There was definitely hope but we wanted to make sure we don’t miss this opportunity of finding a cure for our child’s condition. We knew that the first day would involve some tests and injections, but we were unaware of what is expected of the day.
The injections are part of the treatment that Neurogen offers. They are supposed to enhance the cells in the bone marrow that will be extracted for the procedure. They administer two shots with a 12-hour gap. The first one was given last night and the second one will be given in the morning.
The PET Scan
The staff informed us the night before that we had to go to MPCT hospital, Navi Mumbai for a PET scan.
For parents who do not understand PET scan, here is how it works:
This is a test that uses a special liquid called a tracer to show how the brain is functioning. The tracer has a tiny amount of radioactivity that makes it visible on a special camera. The tracer is injected into the blood through an IV and travels to different parts of the brain. The camera takes pictures of the brain and creates a 3D image on a computer screen. The image shows where the brain cells are active or damaged.
The problem was that our child hated the IV (intravenous tube). It took six nurses to hold him down and insert the IV. Then we had to wait for 45 minutes for the tracer to reach the brain. He was crying and trying to pull out the IV. We tried to calm him down and keep the IV in place. He was given a sedative, but it did not help much.
For the PET scan, he was given a mild dose of general anesthesia. He was taken inside and the scan was done in about 5 minutes. He came out sleeping on his side. We paid for the scan and the anesthesiologist. The hospital arranged an ambulance for us to go to the next facility for an MRI.
The MRI Scan
The MRI center was about 12-15 minutes away. The name of the center is “Omega Imaging & Medical Center” There were three other children waiting for their turn. Our child was still sleepy from the anesthesia given him for the PET scan. We paid for the MRI and the anesthesiologist. He was given another mild dose of anesthesia and taken inside. The MRI was done in about 5-7 minutes. The same ambulance took us back to the KLS Wellness Center (a smaller Neurogen hospital).
The MRI is a test that uses a strong magnetic field and radio waves to create detailed images of the brain. It can show the structure and anatomy of the brain and detect any abnormalities.
Here is a fee details that we have paid for both MRI and PET Scan
On Mondays, these two centers are reserved for Neurogen patients only. This ensures that the data is collected from the same machines and specifications.
Back at Neurogen
We were back in our room by noon. Our child woke up and started to fight with the IV again. After an hour of crying and struggle, we decided to remove the IV. We knew that he would need another one at night for the injections.
We want to stress that every child’s experience is different. Some children were very calm and accepted the IV. Others struggled like ours. Our experience with the IV was not great, but it does not mean that it is the same for everyone.
The senior doctor came and visited us and explained the PET and MRI results later that evening. She confirmed that the procedure would be done at night around 12:30 AM. We braced ourselves for a long night ahead.
