Connor is a 16 month old happy and very adaptable child. He was born full term and had a normal natural delivery. He has a cousin that is 2 weeks older than he is. Up to the age of 14 months the 2 of them were hitting milestones within days of each other. They were walking at 12 months and practically running a week or so later. One day in November we noticed that Connor wasn't getting around as fast and he wasn't walking quite right. The best way to describe it is that he walked like he was drunk. He would be standing there and just fall over. The scary part is that he wasn't falling onto his butt like babies learn to do early. He would fall face first, backwards and sideways. His falls increased and so did the injuries. Thank God none of the injuries were serious and didn't require anything more than an ice pack and some TLC.
We had been taking him to the pediatrician often around this time. He had an upper respiratory infection one day and fevers the next. I am not sure how many sick visits we had between November and his next well check up on January 8th when we saw our regular pediatrician but there were a few. We always brought up the walking and we always got the same answers. He has a virus and they can do funny things to your system was one. He might have fluid in his ears and it is throwing off his balance was the other. We knew it was more than that but we couldn't get anyone to listen to us.
Christmas day was an eye opener for me as to how bad Connor had gotten. I am with him everyday so even though I knew that there was something wrong and he wasn't getting better I didn't realize how bad he had gotten. My mother came over and she hadn't seen Connor in a few weeks. When she saw how bad he was she got real upset. I realized then how bad things were. At this point he had started to lose words that he had been using for months now. By the time of his 15 month well check up he was only saying dada.
Everything changed on January 8th. Connor went in for a well check up with our regular pediatrician (on sick visits we get whoever is there). Everything was going fine. We were waiting for the Dr to come in and realized that he needed his diaper changed. My husband was changing his diaper when Connor had a seizure. His eyes rolled to the back of his head, he got all floppy, he was unresponsive and he slept for hours when it was over. After our Dr heard about the walking and the seizure she was very alarmed. She sent us for a CAT scan 2 days later. He had to be sedated because of his age so it was a big deal. That came back negative but she wanted him seen by a neurologist asap. The night after his CAT scan I believe he had another seizure but he was sleeping so I couldn't be sure. His one foot and leg were moving in a jerky motion for almost a minute. This isn't something he had ever done before.
The only pediatric neuro Dr seeing new patients with less than a 6 month wait was over an hour away. I took it. Her office wanted us to get a EEG first and going by that they would decide how soon to get him in. The EEG was at her office an hour and 20 min away. We had that appoint on the 14th. The EEG came out negative. But, our Dr heard our story from her nurse and EEG tech. Her office called us on my cell phone to come back in. She wanted to see Connor right away. Thankfully we hadn't left the parking lot yet. We had just gotten done eating the sandwiches we brought. By the time we were done with the Dr we were being rushed to Children's Hospital Of Philadelphia (CHOP) for more test.
We were in the hospital from Monday late afternoon to Friday afternoon. Connor had an overnight EEG, MRI (which was a nightmare because they had to sedate him for this and the spinal. He had a reaction to one of the meds they gave him to relax him and he freaked. It was instant terror on his face and they had to give him alot more med to knock him out), blood work and a spinal tap. The only thing that came back not negative was his MRI and that didn't have anything in it that they felt helped them figure things out. They didn't feel that the "foci" (what they found on his white matter) was significant enough or enough of them and in the wrong section of the brain to help. Connor did get worse while at the hospital. He got to the point that he couldn't stand and if he did he would fall backwards let alone be able to walk. He also started having balance problems with sitting. I had to hold on to him or he would teeter over.
We had been taking him to the pediatrician often around this time. He had an upper respiratory infection one day and fevers the next. I am not sure how many sick visits we had between November and his next well check up on January 8th when we saw our regular pediatrician but there were a few. We always brought up the walking and we always got the same answers. He has a virus and they can do funny things to your system was one. He might have fluid in his ears and it is throwing off his balance was the other. We knew it was more than that but we couldn't get anyone to listen to us.
Christmas day was an eye opener for me as to how bad Connor had gotten. I am with him everyday so even though I knew that there was something wrong and he wasn't getting better I didn't realize how bad he had gotten. My mother came over and she hadn't seen Connor in a few weeks. When she saw how bad he was she got real upset. I realized then how bad things were. At this point he had started to lose words that he had been using for months now. By the time of his 15 month well check up he was only saying dada.
Everything changed on January 8th. Connor went in for a well check up with our regular pediatrician (on sick visits we get whoever is there). Everything was going fine. We were waiting for the Dr to come in and realized that he needed his diaper changed. My husband was changing his diaper when Connor had a seizure. His eyes rolled to the back of his head, he got all floppy, he was unresponsive and he slept for hours when it was over. After our Dr heard about the walking and the seizure she was very alarmed. She sent us for a CAT scan 2 days later. He had to be sedated because of his age so it was a big deal. That came back negative but she wanted him seen by a neurologist asap. The night after his CAT scan I believe he had another seizure but he was sleeping so I couldn't be sure. His one foot and leg were moving in a jerky motion for almost a minute. This isn't something he had ever done before.
The only pediatric neuro Dr seeing new patients with less than a 6 month wait was over an hour away. I took it. Her office wanted us to get a EEG first and going by that they would decide how soon to get him in. The EEG was at her office an hour and 20 min away. We had that appoint on the 14th. The EEG came out negative. But, our Dr heard our story from her nurse and EEG tech. Her office called us on my cell phone to come back in. She wanted to see Connor right away. Thankfully we hadn't left the parking lot yet. We had just gotten done eating the sandwiches we brought. By the time we were done with the Dr we were being rushed to Children's Hospital Of Philadelphia (CHOP) for more test.
We were in the hospital from Monday late afternoon to Friday afternoon. Connor had an overnight EEG, MRI (which was a nightmare because they had to sedate him for this and the spinal. He had a reaction to one of the meds they gave him to relax him and he freaked. It was instant terror on his face and they had to give him alot more med to knock him out), blood work and a spinal tap. The only thing that came back not negative was his MRI and that didn't have anything in it that they felt helped them figure things out. They didn't feel that the "foci" (what they found on his white matter) was significant enough or enough of them and in the wrong section of the brain to help. Connor did get worse while at the hospital. He got to the point that he couldn't stand and if he did he would fall backwards let alone be able to walk. He also started having balance problems with sitting. I had to hold on to him or he would teeter over.
After a week in the hospital, lots of tests, lots of starving him for the sedation, his reaction to the sedation, a few bumps and bruises from falls, a sore arm from a fall in his bed, the emotional roller coaster and lots of bad food we didn't find out much. They think he has Post Viral Cerebelitis and there is nothing that can be done for it except wait it out. (if that is what he has since no one knows anything for sure) We were sent home to wait things out. If he gets worse we are to call and bring him back in. They gave us a list of things that if he does we need to take him to our nearest ER (CHOP is 1 1/2 hours from us) and CHOP will transport him back to them. We were a wreck.
To say that the first few days back were nerve wracking would be an understatement. We were on constant guard to make sure that he didn't get hurt. Watching for any seizures. Trying to evaluate if Connor's walk was getting better, getting worse or staying the same. I spent hours on the Internet trying to find out anything I could about cerebelitis without a whole lot of luck. There isn't much out there about it and that is one reason I am writing this blog. I am hoping to find someone who has some experience with it and to try to help the next person looking for info.
To say that the first few days back were nerve wracking would be an understatement. We were on constant guard to make sure that he didn't get hurt. Watching for any seizures. Trying to evaluate if Connor's walk was getting better, getting worse or staying the same. I spent hours on the Internet trying to find out anything I could about cerebelitis without a whole lot of luck. There isn't much out there about it and that is one reason I am writing this blog. I am hoping to find someone who has some experience with it and to try to help the next person looking for info.
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