I just heard from the radiology department of CHOP and Connor goes in on Thursday the 21st for all his tests. The earliest appointment I could get is for 3:30 and we have to be there by 2:30. That sucks. He can't have anything to eat for 6 hours before and only clear liquids until 12:30. The poor baby is going to be hungry and miserable. I tried to get a morning appointment but the earliest appointment in the morning wasn't until March. That was just too long to wait. I did make sure that they would either keep the iv in until we can get the blood drawn after the MRI or hopefully they can do it right there. But, he will NOT be getting stuck twice.
I will write again if his condition changes or anything else changes. If not, I will post after he gets the MRI. I just pray they find something that can be treated. I know there is something going on so all I can do now is pray that they can find out for sure what it is and that it is something that they can treat and treat successfully. Before he loses anymore ground and it it too late.
Thursday, February 14, 2008
2/14/08
The update to our Dr appointment that we had on Tuesday the 12th is that we never went. We had a snow storm that didn't amount to much but the roads were bad. We didn't want to take the kids out and risk an accident. After I cancelled I tried to reschedule & we were informed that our pediatrician will be away and they tried giving me an appoint for March. I told them we couldn't wait that long. The receptionist said we could see one of the other dr's. I said, no. The other dr's have not seen him through all of this nor have they been the ones keeping in touch with our neurologist. These are some of the same dr's that kept blowing us off when we were trying to tell them something was wrong. I don't think so. We decided to not go in and just make the call to our neurologist on Wednesday the 20th like we were supposed to.
Today our neurologist called me. (I was shocked me let me tell you. Also it made me worry that something else is up). She asked how Connor was and if he was getting any better. I told her no. I told her that he hasn't regained any words and he is much more irritable. Our Dr asked when we are supposed to see her. I reminded her that we have nothing set up. The way we left things last week was that I was supposed to call her on the 20th and if he wasn't any better she would set up the MRI of his brain and spine and do the metabolic work up. I told her I had the RX for the blood work already. She is not happy with the fact that Connor has shown no improvement and she wants to move everything up. She is putting in the paper work to do Connor's MRI at CHOP sometime next week as an outpatient. She told us to get the blood work done while we are there.
After all this is done and she gets the results she will decide about putting Connor back into CHOP for more advanced and invasive tests and treatment if there is any. I could be wrong but I got the impression that she is going to end up putting him back in. I know last week Dr Venkat (neuro Dr) was talking about ivgg therapy and how she wasn't ready to do that yet because it is a blood product and that can bring it's own set of complications and problems. I just looked that up and I haven't seen what that is going to accomplish for him since we don't know what it was that caused this. The articles I have read state that it works well for kids that were exposed to certain diseases and you know what they are and it is given early after exposure. I don't see how this is going to help him but you can be sure I will questioning his doctors and understanding how this will help before I will allow them to give him anything.
I am waiting for CHOP to call me today so we can find out when we are going in for his tests. I just have to make sure it is not on Tuesday because that is the day we have to go to my pain Dr or I will be out of meds and that will create even bigger problems and I will not be any good for anybody. Thank God the company and people Joe works for are so great and understanding or I would be in a real mess. As it is we have to worry about the lost money from the days off but at least we don't have to worry that the job won't be there on the days he can go in. Without that we would have just one more things we would have to worry about. He couldn't be working for a better company right now. They have always maintained through out all of this that Connor comes first and not to worry about the job it is there and isn't going anywhere.
I will post again as soon as I hear from CHOP and have a date for his tests. I dread having to go through all this again especially the sedation part. His reaction to that was something I never want to see again. As long as they don't give him that one medication in that little cocktail they prepare for him then he should be good. BUT, I will always be holding my breath every time he has to have meds now just waiting for a reaction like that. It is something I never ever want to see again.
Today our neurologist called me. (I was shocked me let me tell you. Also it made me worry that something else is up). She asked how Connor was and if he was getting any better. I told her no. I told her that he hasn't regained any words and he is much more irritable. Our Dr asked when we are supposed to see her. I reminded her that we have nothing set up. The way we left things last week was that I was supposed to call her on the 20th and if he wasn't any better she would set up the MRI of his brain and spine and do the metabolic work up. I told her I had the RX for the blood work already. She is not happy with the fact that Connor has shown no improvement and she wants to move everything up. She is putting in the paper work to do Connor's MRI at CHOP sometime next week as an outpatient. She told us to get the blood work done while we are there.
After all this is done and she gets the results she will decide about putting Connor back into CHOP for more advanced and invasive tests and treatment if there is any. I could be wrong but I got the impression that she is going to end up putting him back in. I know last week Dr Venkat (neuro Dr) was talking about ivgg therapy and how she wasn't ready to do that yet because it is a blood product and that can bring it's own set of complications and problems. I just looked that up and I haven't seen what that is going to accomplish for him since we don't know what it was that caused this. The articles I have read state that it works well for kids that were exposed to certain diseases and you know what they are and it is given early after exposure. I don't see how this is going to help him but you can be sure I will questioning his doctors and understanding how this will help before I will allow them to give him anything.
I am waiting for CHOP to call me today so we can find out when we are going in for his tests. I just have to make sure it is not on Tuesday because that is the day we have to go to my pain Dr or I will be out of meds and that will create even bigger problems and I will not be any good for anybody. Thank God the company and people Joe works for are so great and understanding or I would be in a real mess. As it is we have to worry about the lost money from the days off but at least we don't have to worry that the job won't be there on the days he can go in. Without that we would have just one more things we would have to worry about. He couldn't be working for a better company right now. They have always maintained through out all of this that Connor comes first and not to worry about the job it is there and isn't going anywhere.
I will post again as soon as I hear from CHOP and have a date for his tests. I dread having to go through all this again especially the sedation part. His reaction to that was something I never want to see again. As long as they don't give him that one medication in that little cocktail they prepare for him then he should be good. BUT, I will always be holding my breath every time he has to have meds now just waiting for a reaction like that. It is something I never ever want to see again.
Sunday, February 10, 2008
After The Hospital
It is now almost a month after Connor got out of the hospital and he is no better. His walking is the same. He isn't saying any words now. He babbles like an infant. He is much more irritable than he has ever been. Our pediatrician called our neurologist right after he got out of the hospital and she at least got a game plan so we didn't feel like we were floundering and on our own. Our pediatrician will be following Connor on a weekly basis and reporting back to our neuro dr. Our neuro dr will be seeing him every 2-3 weeks indefinitely.
Our first visit with the pediatrician went well. When I say well I mean that I felt like someone was on our side. She was upset with the way he was walking and the fact that he lost all his words. She didn't like the idea of how long this had gone on and told us that we were going to give the neuro dr the couple of weeks she thinks he needs to resolve this on his own and if that doesn't work then we need to look further into it. I left there at least feeling like we were listened to and our feelings were validated (meaning she didn't just blow off all our concerns like some of the dr's in the hospital did).
We saw our neuro dr on February 6th. She sat down and explained alot more to us and I don't feel that she is blowing off our concerns anymore. I asked her about clotting disorders (my sister just found out she has 2 hereditary clotting disorders. I haven't had the chance to get tested yet.). I was told that he would be having strokes not what he is going through. I questioned her about his MRI because any mom who reads that her kid has "nonspecific white matter hyper intense foci" is not going to just let it go as NOTHING. She informed me there were not enough of them to cause a concern yet (bet me I am very concerned!!). As long as Connor doesn't get worse we are going to wait. If he doesn't get better in 2 weeks we are going to repeat his MRI and do a full metabolic work up. If he gets worse at any time they will do things much sooner.
The neuro dr explained to us and from what I have been able to find during my research, cerebelitis usually gets better in 90% of the cases within 4 weeks. My worry is that other 10%. Because Connor has had this since at least mid November. We are way past the 4 week mark. I can't find a whole lot on it but the few posts I have found all the kids had some residual damage. Most of it was problems with coordination and balance. If my son can't be a ballet dancer because of this I can live with it but there are other things that can happen. I read about a 7 yr old that is in diapers because of this and some kids that can't even crawl. All the kids that were in those posts got worse anytime they had a cold or got sick. I just want the truth from the dr's. Are these the very rare cases? What are the chances of this happening to Connor, especially when he is so long into this? So many questions and no answers.
The dr's think this has been caused by a virus Connor had back in October. He had Hand, Foot & Mouth Disease. If that is the case doesn't that mean that he has really had this building up since then and not November? Then I found out that one of the rare complications of chicken pox is cerebelitis. Connor had is 1yr vaccinations in October and the chicken pox vaccine was one of the ones he got then. Could this have come from that? He is supposed to get a booster to that one soon (I think) and I am not going to let him have it. What if he just gets worse and never recovers because of it? Now I am petrified to have him get the chicken pox (which is a risk if I don't let him get the booster).
At this point we are in a waiting game. We are just waiting to see if he gets better and watching to keep him from getting hurt. He still wants to do all the stuff he did before but his body is making it hard. We just put foam squares down on our floor to try to keep him from getting hurt. I am disabled so trying to keep up with him is next to impossible.
We go to the pediatrician on Tuesday the 12th so I will do another post when we find anything else out. Now I have my 7 yr old getting sick and we have been told by the dr's in the hospital that something like that could make Connor worse so God only knows what is going to happen now.
Our first visit with the pediatrician went well. When I say well I mean that I felt like someone was on our side. She was upset with the way he was walking and the fact that he lost all his words. She didn't like the idea of how long this had gone on and told us that we were going to give the neuro dr the couple of weeks she thinks he needs to resolve this on his own and if that doesn't work then we need to look further into it. I left there at least feeling like we were listened to and our feelings were validated (meaning she didn't just blow off all our concerns like some of the dr's in the hospital did).
We saw our neuro dr on February 6th. She sat down and explained alot more to us and I don't feel that she is blowing off our concerns anymore. I asked her about clotting disorders (my sister just found out she has 2 hereditary clotting disorders. I haven't had the chance to get tested yet.). I was told that he would be having strokes not what he is going through. I questioned her about his MRI because any mom who reads that her kid has "nonspecific white matter hyper intense foci" is not going to just let it go as NOTHING. She informed me there were not enough of them to cause a concern yet (bet me I am very concerned!!). As long as Connor doesn't get worse we are going to wait. If he doesn't get better in 2 weeks we are going to repeat his MRI and do a full metabolic work up. If he gets worse at any time they will do things much sooner.
The neuro dr explained to us and from what I have been able to find during my research, cerebelitis usually gets better in 90% of the cases within 4 weeks. My worry is that other 10%. Because Connor has had this since at least mid November. We are way past the 4 week mark. I can't find a whole lot on it but the few posts I have found all the kids had some residual damage. Most of it was problems with coordination and balance. If my son can't be a ballet dancer because of this I can live with it but there are other things that can happen. I read about a 7 yr old that is in diapers because of this and some kids that can't even crawl. All the kids that were in those posts got worse anytime they had a cold or got sick. I just want the truth from the dr's. Are these the very rare cases? What are the chances of this happening to Connor, especially when he is so long into this? So many questions and no answers.
The dr's think this has been caused by a virus Connor had back in October. He had Hand, Foot & Mouth Disease. If that is the case doesn't that mean that he has really had this building up since then and not November? Then I found out that one of the rare complications of chicken pox is cerebelitis. Connor had is 1yr vaccinations in October and the chicken pox vaccine was one of the ones he got then. Could this have come from that? He is supposed to get a booster to that one soon (I think) and I am not going to let him have it. What if he just gets worse and never recovers because of it? Now I am petrified to have him get the chicken pox (which is a risk if I don't let him get the booster).
At this point we are in a waiting game. We are just waiting to see if he gets better and watching to keep him from getting hurt. He still wants to do all the stuff he did before but his body is making it hard. We just put foam squares down on our floor to try to keep him from getting hurt. I am disabled so trying to keep up with him is next to impossible.
We go to the pediatrician on Tuesday the 12th so I will do another post when we find anything else out. Now I have my 7 yr old getting sick and we have been told by the dr's in the hospital that something like that could make Connor worse so God only knows what is going to happen now.
Our Story
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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