Where I Have Been This Past Week

This past week did not go at all as I had planned.

I just wanted to update everyone where I have been. I have not been posting this past week (except for my scheduled posts) because I was in the hospital with my son. On monday he had a few seizures. We saw his doctor and because my kids have a genetic disease that has not been able to be diagnosed yet we have problems occasionally with seizures and other health problems. A common cold can put them into the hospital.

My son had just caught a cold and he almost always has a time on seizure instability with a cold. So the seizures on Monday were not totally unexpected. We went in to see his doctor on Monday and thought everything was fine. Well we were wrong he was still having problems on Tuesday morning so the doctor wanted him in the hospital to do a test to watch his brain activity. So we went in expecting to be in there overnight for a video EEG.

The scan showed problems in the brain activity which we were hoping would show up so we could determine the problem. The doctor decided to do an MRI to recheck his brain as his last one was 5 years ago and it needed to be checked with this recent change in his health. They also did a spinal tap to check for some disorders while he was sedated. We almost went home on Wednesday night after the MRI but he just wasn’t waking up very well and his doctor said just to stay and we would go home the next morning.

The next morning he had more seizures so they decided to check his brain activity again. So we went through the process of reconnecting all the wires to his head which is a process that takes almost an hour and is somewhat uncomfortable. He did really well but the scan showed the brain activity was much worse. Worse than just the day before. Not only was he having seizure when we saw them outwardly but he was also having seizure we could not see. He was so much worse with no explanation why.

The doctor tried an IV anti-seizure medication but it did nothing to help. The seizures just kept coming. So  it was really quite scary. My son was either in a deep sleep from all the medications or awake and having seizures off and on. This went on the two days. Then the doctor switched IV drugs and the scans slowly improved.

My son was still quite sedated with medication but at least the medication was working. Nothing had worked to this point so we were really happy to have a little bit of good news. After a twenty-four hour period of no seizures we were released to go home.

So we are home now and I will update later on how things are now that we are home in a day or two when I have time.

We would appreciate your thoughts and prayers. We don’t know what the future holds for us right now. We need to let our son adjust to his medication. He is usually a very active little boy but right now he has trouble staying awake because of the medication. He has not been able to play much as he has trouble walking right now and  he needs to sit against something or with someone to be able to sit up. I am hoping these things will improve as he adjusts to the new medication. Only time will tell.

My time online will be limited as I need to care for him but I do have a few post scheduled ahead which will be coming up. But my time to respond to comments will be more limited.

Thank you for all your prayers and concerns

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