We had our appointment with the new Neurologist at St Christopher's children's hospital on Thursday. We didn't get any definite answers but I feel the trip was worth it. This dr doesn't feel that what Connor has is a straight forward case of cerebellitis. She told me that cerebellitis does not cause developmental regression or developmental delay. She also said Connor's liver was enlarged. She is not sure if it is enlarged within normal limits or not. It isn't a massive swelling but she could definitely feel it which you are not supposed to be able to do. Connor is going to need a CAT scan now to check that. Another sedation procedure. If his liver is enlarged then that would make her look at a whole new area of things that Connor could have like storage compartment diseases. I have looked that up and there are 50 different diseases and every one of them have different symptoms and different prognosis. It is going to take me awhile to get through them all. She also wants him to have a 48hr EEG to make sure that his zone out times and twitches are just that and not seizures. She is going to back our dr in trying the IVIG therapy. If that doesn't work then she feels we need to go ahead with the muscle and skin biopsies to look for mitochondrial diseases.
We go to our regular Neurologist on Tuesday the 26th to see where we go from here. She wants to do a EEG in her office which doesn't make any sense to me since the other dr recommended a 48hr EEG. We need to bring a letter from our physical therapist stating what she sees with his ataxia which is that he is more shaky and off balance than normal and things he was able to do even a week ago he is struggling with now. Our dr is going to use all this to try to convince the insurance co to pay for the IVIG.
We are also trying to bet a behavioral evaluation on Connor due to all the Autistic traits he is showing. Both our physical therapist and our developmental intervention teacher have recommended this in the hopes that we will be able to get a behavioral therapist in here to work with him too. We have also started Connor with a chiropractor. We haven't seen any results with that yet but he has only been working with him 1X/week for about a month now. We are just keeping our fingers crossed that something is going to start working. I will post again as soon after our appointment on Tuesday as possible.
Wednesday, August 20, 2008
Wednesday, July 30, 2008
7/0/08
There hasn't been alot going on with Connor. We have an appointment with a new neuro dr at St Christopher's in Phili on 8/14. Our dr's are hoping if this dr also agrees that we need to try the IVIG therapy then it will help in the fight with the insurance co to pay for it. He has been getting his therapies each week. We did have to make a call to his neuro dr to let her know that his ataxia has gotten worse. Things he was able to do in physical therapy even a week ago he is struggling with or can't do now. When he is in the tub we have to keep a hand behind him because he will fall over backwards. Our physical therapist is writing a letter to let the dr and insurance co know that he has gotten a little worse. I will keep everyone updated as things happen here.
Wednesday, July 2, 2008
UPDATE 7/2
Well here is the latest. Connor's IVIG is on hold. We were told CHOP was trying to get him in for this Tuesday 7/1. We have been on a holding pattern for the call to go in. I got a call today that our insurance co has denied it. Our neuro dr called and spoke to the medical director of the insurance co and they still denied it. So, the last chance to get Connor in is some last process the neuro dr can try but it takes a long time. It is going to be a few weeks at the earliest for all this to happen.
In the mean time they want us to make an appointment for a pediatric movement disorder place outside of CHOP to look at Connor and see if they can come up with anything. I will keep people updated as things happen.
In the mean time they want us to make an appointment for a pediatric movement disorder place outside of CHOP to look at Connor and see if they can come up with anything. I will keep people updated as things happen.
Friday, June 27, 2008
6/27 Hospital stay cominig
Connor has started his therapies. I was so worried that we wouldn't get them started before he went back into CHOP. After every admission he has gone from a loving easy going little boy to one who is scared of everyone but his immediate family. I am hoping that having him get used to his therapists before the hospital stay he will not have such a hard time accepting them in his home after. I knew that if we waited to start this till after we got home things were going to be much harder. He seems to really love his therapists and has connected with them very quickly.
It looks like he is going in to CHOP on Tuesday 7/1/08 for his IVIG therapy. We were all hoping it would get started earlier but 6 days after Connor's spinal tap he woke up from a nap with a 103.8 fever and it only climbed to 104.2 in the pediatricians office. So, things are a little more behind than we hoped at this point because he had to be healthy before they could go ahead with the IVIG therapy. We still don't know if he is getting the 2 day or the 5 day infusion. From what I read the initial treatment should be 5 days and any booster treatments should be 2 day. But, who knows what they are planning. If we are in for 5 days then Connor, Joe & I will be in the hospital for the 4th of July. What a bummer!
In the beginning of all of this I had people mention having fund raisers to help us with all of this. I wasn't ready to say go ahead yet. I don't know if it was because I kept hoping that everything would end at any time and Connor would be all better. Reality and the bills have set in! Now that schools out (Julia's teacher offered to do some fund raisers) I have decided that we have to do something. I just don't know how to do this, when I can possibly find the time to do this. Is it OK for a person to throw a fund raiser for themselves? That's something to think about. Anyone with any ideas on how to do this or what to do please, please place a comment. I really need help here.
Keep Connor in your prayers while he goes through this. Pray he doesn't have any major side effects like anaphylactic shock or meningitis. And let's not forget to pray that this will work!! Please God something has to give here. Let this work!!!
It looks like he is going in to CHOP on Tuesday 7/1/08 for his IVIG therapy. We were all hoping it would get started earlier but 6 days after Connor's spinal tap he woke up from a nap with a 103.8 fever and it only climbed to 104.2 in the pediatricians office. So, things are a little more behind than we hoped at this point because he had to be healthy before they could go ahead with the IVIG therapy. We still don't know if he is getting the 2 day or the 5 day infusion. From what I read the initial treatment should be 5 days and any booster treatments should be 2 day. But, who knows what they are planning. If we are in for 5 days then Connor, Joe & I will be in the hospital for the 4th of July. What a bummer!
In the beginning of all of this I had people mention having fund raisers to help us with all of this. I wasn't ready to say go ahead yet. I don't know if it was because I kept hoping that everything would end at any time and Connor would be all better. Reality and the bills have set in! Now that schools out (Julia's teacher offered to do some fund raisers) I have decided that we have to do something. I just don't know how to do this, when I can possibly find the time to do this. Is it OK for a person to throw a fund raiser for themselves? That's something to think about. Anyone with any ideas on how to do this or what to do please, please place a comment. I really need help here.
Keep Connor in your prayers while he goes through this. Pray he doesn't have any major side effects like anaphylactic shock or meningitis. And let's not forget to pray that this will work!! Please God something has to give here. Let this work!!!
Tuesday, June 17, 2008
UPDATE 6/17
Connor had his MRI & spinal tap on 6/11. Nothing has changed. They still see the foci's on the MRI. They haven't gotten worse but they haven't gotten any better either. The results that are back from his spinal tap have not given them any clues.
His neurologist called me yesterday and she wants to put Connor into the hospital again and start IVIG therapy. No one is sure if this will help or not but she wants to do something. She has decided to go with the IVIG therapy over the steroids because his spinal fluid didn't show any protein or white blood cell clusters to point her in that direction. She told me that there are some known risks. They are anaphylactic shock (it is a blood product), meningitis, encephalitis & headaches. She told us to research it on our own, talk it over and let her know our decision. If we decide to go ahead with it she will get things set up for Connor to go into the hospital.
We looked it up last night. From what we read the chance of Connor having any of these side effects are much less because of his age. I think that he has a much higher chance of having a complication from the steroids than he does with this. The only thing we are worried about is that the FDA has only approved this for 6 different conditions and from what I read Connor's isn't it. Which means that insurance may not cover it. IVIG is being used for a bunch of different conditions with some very promising results. It has been used for MS, fibromyalgia, chronic fatigue and a whole bunch of other things but FDA only approved it for a whopping 6 conditions. The cost is VERY expensive. For children it is around $3,000/infusion. For adults it is about $10,000/infusion. We are not sure yet if his dr is going to put him on a 2 day or 5 day infusion. If insurance does not cover this there is no way we can go ahead with it. I am still trying to work all that out and figure out what we are going to do. I was thinking of letting them go ahead with it and paying $5/month. The only thing to do is just wait and see what happens but I did call her to tell her we want to try it. There are risks but the risks of not doing anything and letting Connor go on this way and not have a chance at a normal life is a risk I don't want to take.
His neurologist called me yesterday and she wants to put Connor into the hospital again and start IVIG therapy. No one is sure if this will help or not but she wants to do something. She has decided to go with the IVIG therapy over the steroids because his spinal fluid didn't show any protein or white blood cell clusters to point her in that direction. She told me that there are some known risks. They are anaphylactic shock (it is a blood product), meningitis, encephalitis & headaches. She told us to research it on our own, talk it over and let her know our decision. If we decide to go ahead with it she will get things set up for Connor to go into the hospital.
We looked it up last night. From what we read the chance of Connor having any of these side effects are much less because of his age. I think that he has a much higher chance of having a complication from the steroids than he does with this. The only thing we are worried about is that the FDA has only approved this for 6 different conditions and from what I read Connor's isn't it. Which means that insurance may not cover it. IVIG is being used for a bunch of different conditions with some very promising results. It has been used for MS, fibromyalgia, chronic fatigue and a whole bunch of other things but FDA only approved it for a whopping 6 conditions. The cost is VERY expensive. For children it is around $3,000/infusion. For adults it is about $10,000/infusion. We are not sure yet if his dr is going to put him on a 2 day or 5 day infusion. If insurance does not cover this there is no way we can go ahead with it. I am still trying to work all that out and figure out what we are going to do. I was thinking of letting them go ahead with it and paying $5/month. The only thing to do is just wait and see what happens but I did call her to tell her we want to try it. There are risks but the risks of not doing anything and letting Connor go on this way and not have a chance at a normal life is a risk I don't want to take.
Tuesday, June 3, 2008
6/3 MRI & Spinal Tap
Connor is going into CHOP for another MRI & spinal tap on Wednesday 6/11. At this point it is a same day type thing but to be safe we are packing just in case they end up admitting him. I know that the metabolic team wanted specific tests done with the MRI & the spinal so our dr is getting in touch with them so that they can make sure all of that is done at the same time. We have to leave here around 7am. He needs to be there by 9am with the procedure to start at 10:30 am. They are figuring that he will be there at least 4 hours from the time we get to the sedation unit till we get to leave but that was said before they realized that he was also having a spinal tap at the same time. So, who knows how long we will be there.
Our pediatrician is trying to get in touch with the ataxia dr because she wants to understand what he thinks is going on and why he is doing the surgery for the biopsies (still don't have a date for that one yet). We are getting the hearing test set up at someplace around here. Thank God there is one thing we can do without driving 2hrs to Philly. Tuesday the 10th Connor gets his helmet too. What a fun and exciting week this is gonna turn out to be!!
Please keep Connor in your prayers. Pray that the dr's will finally see something and figure out once and for all what is going on with him so we can start the right treatment instead of just watching him fall farther and farther behind.
Friday, May 30, 2008
5/30
There has been alot of things going on this week. First Connor's neuro dr called and wanted to know how he was doing. I told her the same. She said we have to start thinking about iv steroid treatment. She said that if he was getting worse then the decision to go ahead with it would be easy. But he's not getting worse he is staying the same. The steroid treatments are not without risks. The risks on worse case scenario could be death. They are in the process now of setting up another MRI & spinal tap. We will get the results of that and then make a decision. If it is cerebellitis he is not getting better on his own. My only problem with this is that no one can tell me for sure that this is what he has. We have 3 dr's thinking he has 3 different things.
Connor's blood work is finally back. That only took 7 weeks. That Dr said that it didn't show any of the things that they were looking for. I am not quite sure what that means since he didn't say that all the tests came back negative. Just that it doesn't show what he was looking for. So, he wants to do the biopsies. I said yes. Because, if Connor has mitochondrial disease then we don't want him to have the steroids. This will be surgery and it will be under general anesthesia. They will be taking muscle and skin biopsies from a few different spots. This dr feels that the odds of something coming back positive from this is somewhere between 30-40%. The dr is trying to set things up for this now and will let me know when.
We got the report from the feed/swallow team. That one said Connor is being treated for paroxysmal leukodystrophy. Of course this diagnosis was new to me and I freaked out. Where did this one come from and why don't I know about it? I called the neuro dr right away and went to look it up while waiting for her to return my call. The Internet says that it is a myelin disorder where genetically he is either missing an enzyme to produce or metabolize myelin. The symptoms certainly sounded like Connor's. Our neuro dr doesn't know where this came from either. She had me call the feed team to see where they got this. Because like she said if someone diagnosed him with this she needs to know about it. So far no one has gotten in touch with me from there. Our neuro dr even e-mailed the director of the team and we still haven't heard anything. The ataxia dr said that he thinks they gave him that diagnosis in the strictest sense of the word (what ever that means) and he wouldn't say that Connor has this. At least right now.
We also had our meeting with early intervention this week. Connor is going to be getting Developmental intervention 2X/week, Physical therapy 1X/week, Speech therapist 1X/month (to follow things since the developmental intervention will work on this also) & Social worker 2X/month for now until things stabilize with him. They are calling it family support. I think they feel mommy is starting to come unglued. (they wouldn't be too far off the mark with that). Hopefully at least some of these services will begin to start in 2 weeks but no longer than a month. Connor also gets his helmet on 6/10. Our " GREAT" insurance won't cover this "type of device". They also suggested we get his hearing checked just to make sure that he is hearing all tones. There are times we have worried about his hearing because when you call him and try to get his attention he doesn't respond to you. He does hear music and loud noises. We just want to make sure that there isn't a problem there that is complicating things. I have a call in to his pediatrician about getting that done too.
On top of all of this Connor's left eye has started to cross at times and it seems a bit droopy. I did mention this to the ataxia dr and he said that it could mean that things could be getting worse. Now the rush is to find out what he has before things get worse and there is no coming back from it.
Connor's blood work is finally back. That only took 7 weeks. That Dr said that it didn't show any of the things that they were looking for. I am not quite sure what that means since he didn't say that all the tests came back negative. Just that it doesn't show what he was looking for. So, he wants to do the biopsies. I said yes. Because, if Connor has mitochondrial disease then we don't want him to have the steroids. This will be surgery and it will be under general anesthesia. They will be taking muscle and skin biopsies from a few different spots. This dr feels that the odds of something coming back positive from this is somewhere between 30-40%. The dr is trying to set things up for this now and will let me know when.
We got the report from the feed/swallow team. That one said Connor is being treated for paroxysmal leukodystrophy. Of course this diagnosis was new to me and I freaked out. Where did this one come from and why don't I know about it? I called the neuro dr right away and went to look it up while waiting for her to return my call. The Internet says that it is a myelin disorder where genetically he is either missing an enzyme to produce or metabolize myelin. The symptoms certainly sounded like Connor's. Our neuro dr doesn't know where this came from either. She had me call the feed team to see where they got this. Because like she said if someone diagnosed him with this she needs to know about it. So far no one has gotten in touch with me from there. Our neuro dr even e-mailed the director of the team and we still haven't heard anything. The ataxia dr said that he thinks they gave him that diagnosis in the strictest sense of the word (what ever that means) and he wouldn't say that Connor has this. At least right now.
We also had our meeting with early intervention this week. Connor is going to be getting Developmental intervention 2X/week, Physical therapy 1X/week, Speech therapist 1X/month (to follow things since the developmental intervention will work on this also) & Social worker 2X/month for now until things stabilize with him. They are calling it family support. I think they feel mommy is starting to come unglued. (they wouldn't be too far off the mark with that). Hopefully at least some of these services will begin to start in 2 weeks but no longer than a month. Connor also gets his helmet on 6/10. Our " GREAT" insurance won't cover this "type of device". They also suggested we get his hearing checked just to make sure that he is hearing all tones. There are times we have worried about his hearing because when you call him and try to get his attention he doesn't respond to you. He does hear music and loud noises. We just want to make sure that there isn't a problem there that is complicating things. I have a call in to his pediatrician about getting that done too.
On top of all of this Connor's left eye has started to cross at times and it seems a bit droopy. I did mention this to the ataxia dr and he said that it could mean that things could be getting worse. Now the rush is to find out what he has before things get worse and there is no coming back from it.
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