Connor is now in an autistic program at our school and doing very well. He has made a lot of progress with more to go. He still has a lot of issues with balance whenever he gets a virus and has some regressions. He had the stomach virus that was going around not too long ago and he went through a period of falling constantly and needing me with him at all times. If I went to the bathroom he would scream like someone was killing him. I usually took him just to avoid the scenes but as we all know there are times when we can't do that. He took a particular fall that left major teeth marks in my parents computer and necessitated a trip by ambulance (husband wasn't reachable to get us there) to the ER. He had a hole in his lip and according to the ER just some cuts in his mouth. His teeth were fine. Well, he kept complaining of his teeth and Connor doesn't complain of things like that he doesn't feel pain like you and I do. Not to mention anyone with an ounce of sense and who saw the marks on that computer could not believe for a minute that he had no damage to his teeth. I took him to the pediatric dentist (thank God we have an amazing one) and the teeth that had no damage.. well, he had 4 teeth with significant damage. He chipped one tooth (told the Dr at ER and they told me it was not chipped) and even hit hard enough to fracture the root on one of his teeth (I didn't even know if it was possible). So, now we wait and see what happens. Ultimately he may lose up to 4 teeth. We can only wait to see if nerve damage develops or his teeth abscess.
He is a great kid with some weird quirks. He is loving and amazingly smart. He picks up things that would take someone else a long time to get. He got into my computer and down loaded music and found a whole media section on my laptop I didn't even know was there. He is one special person.
As you can see the story continues. I am always petrified that the next illness will be the one that regress him so much that there is no coming back from it. No answers from Doctors. In fact at this point he doesn't see anyone besides his pediatrician. The other Doctors have given up. If there is anyone still following this after all the time I have not posted, thank you, we can use all the support we can get.
Tuesday, May 18, 2010
Thursday, July 2, 2009
July 2, 2009
We have so much going on and yet not much new. If that makes any sense. Since my last post Connor has seen the new neurologist, had an MRI, had some genetic testing, we have had appointments at the school he will be going to in the fall because he ages out of early intervention on his birthday. I will try to do this chronologically.
Our appointment with the new Nero dr didn't go as well as we had hoped. He won't take Connor's case. He says it is too complicated. That he would refer us to CHOP. He did order blood work for some genetic testing, an MRI and some special hearing tests. Connor has had the MRI done and that showed the "foci's" or spots on his brain are stable. They haven't gotten worse. What he didn't tell me until I got the report myself is that there is a problem showing with the blood vessels in his brain. He has a hypoplastic vertebral artery. Which mean that the artery running up along the spine of his neck to the brain has no give to it. It is stiff. (very basically put). The basilar artery is ectatic which means the artery being fed by the vertebral artery is slightly bulging. I looked this stuff up on my own and then called the dr because they both can lead to a stroke. I was told that it had nothing to do with what is going on with him now and he hasn't had a stroke yet. DUH! I knew he didn't have a stroke but what about what may happen in the future? So it has now been decided that we need a consult with a Neurosurgeon. We haven't got the genetic testing back yet. Hopefully next week. We are holding off on the hearing test because he would have to be put to sleep for it and no one told us that when we went to do the MRI or we would have done them at the same time. Now I don't want him sedated until he is checked out by the neurosurgeon.
We need to go to a whole bunch of different dr's and so far I haven't made any of the appointments. The neurosurgeon and the cardiologist have to come first. Connor needs a cardiologist now because he now has a heart murmur. We need to get him to a gastro dr because of the chronic diarrhea and the choking. The school is insisting this all be done before he starts at the end of September. He will need a barium swallow test so that they can see the structures of this throat while drinking something to try and determine why he is choking so much. We have seen a developmental eye dr because his occupational therapist thought there may be some processing problems but that turned out ok for now. He has to go back in 6 months. Our pediatrician wants him to be seen by the metabolic team at chop also. I honestly don't remember what the reason was for that one.
We had Connor's 6 month meeting for Early Intervention. He is now getting 14 hrs of therapy/ week. They upped his OT to 5hrs/week and his speech went up to 2hrs/week. We also had our meeting with the school case manager and the school. I am so not ready to be sending my almost 3yr old to school. None of my kids went to preschool or daycare and here I have one that has the most trouble and I have to send him out of the house sooner than all the others. The big debate is if he should go into the disabled preschool which is 2 1/2hrs/day or the autistic class which is 6hrs/day. My first reaction was no way was he going for 6hrs. He was going to the preschool program. But, after meeting both teacher and hearing about the programs and the teacher to student ratio I really like the autistic class. I am still not happy about how long it is and we are real worried about how he will do away from me for that long. But, the teacher is great and he really liked her. Connor will make the 6th student in the class and there is a teacher and 4 aides along with all the therapists that are in and out of there. I am just not sure what the right thing to do for him is.
Connor is doing better in some areas like his speech is getting better. Still not any where near what it should be but better. He is not so rigid with that he will touch or not touch. His balance is kind of status-quo. He is still having some major risk taking behavior because he doesn't understand that things are dangerous. He will only talk to his 2 cousins. Other that that if any other kids comes near him he goes into his own world and acts like they aren't there. He is having some problems with his temperature. If it is hot outside, if he is tired, if he gets anxious then he starts to run a fever. As soon as the problem (what ever it happens to be at the time) is fixed or goes away then so does his fever. Our dr said that there isn't anything we can really do for it but try to treat it at the time. I can see this having some big problems with the school. I have started to give Connor Melatonin at night before bed to try and help with his sleep issues. Things are at least 90% better than they were. He used to go to sleep @ 9-10 (started trying by 7) then he would wake up around 12-1 and be up until sometimes 5 in the morning then he would be up for the day by 6-7. I was a walking zombie. Now for the most part he is down by 8 and up by 7 with maybe one wake up in the middle of the night but not for too long. Much better!!! We are also in the process of trying to get SSI for Connor. There are so many things he needs and some much our insurance won't cover. I am keeping my fingers crossed. Hopefully if we get it we can get him into a Defeat Autism Now dr.
I will try to post again next week when we get the genetic testing back. I keep hoping that they will find SOMETHING. I need some answers soon or I am going to go crazy.
Our appointment with the new Nero dr didn't go as well as we had hoped. He won't take Connor's case. He says it is too complicated. That he would refer us to CHOP. He did order blood work for some genetic testing, an MRI and some special hearing tests. Connor has had the MRI done and that showed the "foci's" or spots on his brain are stable. They haven't gotten worse. What he didn't tell me until I got the report myself is that there is a problem showing with the blood vessels in his brain. He has a hypoplastic vertebral artery. Which mean that the artery running up along the spine of his neck to the brain has no give to it. It is stiff. (very basically put). The basilar artery is ectatic which means the artery being fed by the vertebral artery is slightly bulging. I looked this stuff up on my own and then called the dr because they both can lead to a stroke. I was told that it had nothing to do with what is going on with him now and he hasn't had a stroke yet. DUH! I knew he didn't have a stroke but what about what may happen in the future? So it has now been decided that we need a consult with a Neurosurgeon. We haven't got the genetic testing back yet. Hopefully next week. We are holding off on the hearing test because he would have to be put to sleep for it and no one told us that when we went to do the MRI or we would have done them at the same time. Now I don't want him sedated until he is checked out by the neurosurgeon.
We need to go to a whole bunch of different dr's and so far I haven't made any of the appointments. The neurosurgeon and the cardiologist have to come first. Connor needs a cardiologist now because he now has a heart murmur. We need to get him to a gastro dr because of the chronic diarrhea and the choking. The school is insisting this all be done before he starts at the end of September. He will need a barium swallow test so that they can see the structures of this throat while drinking something to try and determine why he is choking so much. We have seen a developmental eye dr because his occupational therapist thought there may be some processing problems but that turned out ok for now. He has to go back in 6 months. Our pediatrician wants him to be seen by the metabolic team at chop also. I honestly don't remember what the reason was for that one.
We had Connor's 6 month meeting for Early Intervention. He is now getting 14 hrs of therapy/ week. They upped his OT to 5hrs/week and his speech went up to 2hrs/week. We also had our meeting with the school case manager and the school. I am so not ready to be sending my almost 3yr old to school. None of my kids went to preschool or daycare and here I have one that has the most trouble and I have to send him out of the house sooner than all the others. The big debate is if he should go into the disabled preschool which is 2 1/2hrs/day or the autistic class which is 6hrs/day. My first reaction was no way was he going for 6hrs. He was going to the preschool program. But, after meeting both teacher and hearing about the programs and the teacher to student ratio I really like the autistic class. I am still not happy about how long it is and we are real worried about how he will do away from me for that long. But, the teacher is great and he really liked her. Connor will make the 6th student in the class and there is a teacher and 4 aides along with all the therapists that are in and out of there. I am just not sure what the right thing to do for him is.
Connor is doing better in some areas like his speech is getting better. Still not any where near what it should be but better. He is not so rigid with that he will touch or not touch. His balance is kind of status-quo. He is still having some major risk taking behavior because he doesn't understand that things are dangerous. He will only talk to his 2 cousins. Other that that if any other kids comes near him he goes into his own world and acts like they aren't there. He is having some problems with his temperature. If it is hot outside, if he is tired, if he gets anxious then he starts to run a fever. As soon as the problem (what ever it happens to be at the time) is fixed or goes away then so does his fever. Our dr said that there isn't anything we can really do for it but try to treat it at the time. I can see this having some big problems with the school. I have started to give Connor Melatonin at night before bed to try and help with his sleep issues. Things are at least 90% better than they were. He used to go to sleep @ 9-10 (started trying by 7) then he would wake up around 12-1 and be up until sometimes 5 in the morning then he would be up for the day by 6-7. I was a walking zombie. Now for the most part he is down by 8 and up by 7 with maybe one wake up in the middle of the night but not for too long. Much better!!! We are also in the process of trying to get SSI for Connor. There are so many things he needs and some much our insurance won't cover. I am keeping my fingers crossed. Hopefully if we get it we can get him into a Defeat Autism Now dr.
I will try to post again next week when we get the genetic testing back. I keep hoping that they will find SOMETHING. I need some answers soon or I am going to go crazy.
Saturday, April 18, 2009
April 18th updates
Connor has a new neuro dr appointment on May 22. I tried getting him in with 3 other Universities and children hospitals and I was told that they aren't taking any new neuro cases. We finally found one that will see us. Just don't know if we are going to get anywhere with this one either. We also got a call from our pediatrician and she told us that the blood work we had done on Connor came back as severely anemic. We have to give him some very specific iron supplement 1 teaspoon 2X/day. That is going to be hell. He freaks out any time you try to put something in his mouth. Then we have to brush his teeth or wipe them off with a cloth cause the stuff will stain his teeth. So, that is another fight. If this doesn't improve things in 3 months he will have to go for more tests to see what is causing this.
We had to have the behavioral therapist come in to the house so that we could figure out the best way to deal with his tantrums. They are getting real bad with the violence escalating. He is not a light child and with my disabilities I am having a hard time protecting Connor and myself.We had to figure out a way to safely restrain him while he is going through the worse of it. I am covered in bruises from his melt downs. He is covered in bruises from his melt downs. He takes toy planes and slams them into his head over and over again. It is scary and heart breaking. His therapist is now calling in the same woman because Connor's speech has gone way down and he is going into his own world much more often. We need help trying to figure out why and what to do about it. We have set up an eval for Connor to start Occupational therapy as an out patient along with what he is getting now. He needs more than he is getting and his therapist now feels that with early intervention they approach things developmentally and as an out patient they will treat it more from a medical stand point. We are all hoping that this helps. Only problem with that is that we don't have the eval until 8/24.
His new developmental scores are in but I don't have them with me. I will post them next time I write. I will also get on here as soon as I can after our neuro appointment in May. God I hope we get some answers and this doesn't turn into another big let down. Thank you all for your prayers and your caring
We had to have the behavioral therapist come in to the house so that we could figure out the best way to deal with his tantrums. They are getting real bad with the violence escalating. He is not a light child and with my disabilities I am having a hard time protecting Connor and myself.We had to figure out a way to safely restrain him while he is going through the worse of it. I am covered in bruises from his melt downs. He is covered in bruises from his melt downs. He takes toy planes and slams them into his head over and over again. It is scary and heart breaking. His therapist is now calling in the same woman because Connor's speech has gone way down and he is going into his own world much more often. We need help trying to figure out why and what to do about it. We have set up an eval for Connor to start Occupational therapy as an out patient along with what he is getting now. He needs more than he is getting and his therapist now feels that with early intervention they approach things developmentally and as an out patient they will treat it more from a medical stand point. We are all hoping that this helps. Only problem with that is that we don't have the eval until 8/24.
His new developmental scores are in but I don't have them with me. I will post them next time I write. I will also get on here as soon as I can after our neuro appointment in May. God I hope we get some answers and this doesn't turn into another big let down. Thank you all for your prayers and your caring
Wednesday, March 11, 2009
Developmental Pediatrician
We had our appointment with the developmental pediatrician on 3/5. I have very mixed feeling about it. The dr that evaluated him says he is only 4 months behind developmentally. No one including his pediatrician believes that. When he is around children that are 18 months or older it is in your face how far behind he is. The dr did not see him interact independently. Every test he did was with Connor sitting on Joe's lap. Any one who works with him knows that what you see when he is "contained" in a chair or lap is not what you see when he is on the floor on his own. (it is now believed that this is because of all of his sensory problems). He did not watch Connor play & see how he doesn't really play. He paces, stops looks at a toy for a few minutes and then starts pacing again. Anyway, even with all he didn't do, he has diagnosed him with PDD-NOS. Which means Pervasive Developmental Disorder No Origin Specified. So, the long and the short of it is that Connor does fall into the autism spectrum. There is a great web site Autism Speaks that explains PDD-NOS if anyone wants a better understanding of this. http://www.autismspeaks.org/navigating/pdd_nos.php .
Connor has started Occupational therapy. He has so many sensory problems that they are going to try a special music program. It works with the brain to try and make some of the connections that are either not connected or broken. He is stimming so bad lately that I don't know what to do. He is also getting more and more violent. I getting so that I don't know how to handle him anymore. I am covered in bruises. He will be slamming his head into you one minute and hugging you the next. He paces around the living room in a circle humming the whole time for an hour or more at a time. Julia is becoming afraid of him because you never know what is going to set him off and he will start hurting you or himself. Because he doesn't feel pain like a "normal" kid we have to be very careful when he does start to flip out. Walking away from him when he is like that doesn't work because he just turns the violence on himself. I am really at a loss.
We are trying to get him in with a Neuro Doctor outside of CHOP for a second opinion and to see about another round of IVIG for him. Unfortunately we are not having any luck. I have called DuPont Children's hospital and Bristol Myer's Squid Children's Hospital (Robert Wood) and neither one is taking any new neuro cases. I don't know if they really aren't taking new cases or they heard we were looking for a second opinion and decided they weren't interested. Our pediatrician is now trying to talk to some dr's and get us in somewhere.
Connor will be ageing out of the Early Intervention program in September. They only take kids until they are 3 then they have to go to a special needs preschool. I am NOT OK with that at all. He will have to be on a bus because I can't drive him due to my disabilities and I don't even know how I will get him to the bus. I don't want him in a school so young. I know people do it all the time and I have nothing against it if it is right for them. It is not right for me. I didn't send any of my kids to preschool or day care. I know I need to send him so that he can have the best chance of a "normal" life someday but I am not OK with it and don't know how I am going to handle it when the time comes to actually put him on the bus scared to death. (he doesn't handle being away from me very well at all and doesn't handle new situations at all well). I just wish that our state did it more like NY. From what I understand they have early intervention till 3 yrs and then another program pick them up in the home until 5yrs of age & then they go to special needs school. I would be much better with that kind of program.
I will write again as soon as I know when and where we have a new neuro appointment. I am hoping it will be soon and not months away. Thank you all for caring and following Connor's story.
Connor has started Occupational therapy. He has so many sensory problems that they are going to try a special music program. It works with the brain to try and make some of the connections that are either not connected or broken. He is stimming so bad lately that I don't know what to do. He is also getting more and more violent. I getting so that I don't know how to handle him anymore. I am covered in bruises. He will be slamming his head into you one minute and hugging you the next. He paces around the living room in a circle humming the whole time for an hour or more at a time. Julia is becoming afraid of him because you never know what is going to set him off and he will start hurting you or himself. Because he doesn't feel pain like a "normal" kid we have to be very careful when he does start to flip out. Walking away from him when he is like that doesn't work because he just turns the violence on himself. I am really at a loss.
We are trying to get him in with a Neuro Doctor outside of CHOP for a second opinion and to see about another round of IVIG for him. Unfortunately we are not having any luck. I have called DuPont Children's hospital and Bristol Myer's Squid Children's Hospital (Robert Wood) and neither one is taking any new neuro cases. I don't know if they really aren't taking new cases or they heard we were looking for a second opinion and decided they weren't interested. Our pediatrician is now trying to talk to some dr's and get us in somewhere.
Connor will be ageing out of the Early Intervention program in September. They only take kids until they are 3 then they have to go to a special needs preschool. I am NOT OK with that at all. He will have to be on a bus because I can't drive him due to my disabilities and I don't even know how I will get him to the bus. I don't want him in a school so young. I know people do it all the time and I have nothing against it if it is right for them. It is not right for me. I didn't send any of my kids to preschool or day care. I know I need to send him so that he can have the best chance of a "normal" life someday but I am not OK with it and don't know how I am going to handle it when the time comes to actually put him on the bus scared to death. (he doesn't handle being away from me very well at all and doesn't handle new situations at all well). I just wish that our state did it more like NY. From what I understand they have early intervention till 3 yrs and then another program pick them up in the home until 5yrs of age & then they go to special needs school. I would be much better with that kind of program.
I will write again as soon as I know when and where we have a new neuro appointment. I am hoping it will be soon and not months away. Thank you all for caring and following Connor's story.
Tuesday, January 6, 2009
1/6/09
It has been a long time since I have updated everyone. So much has gone on. Sorry for the long delay. Connor was doing really well for awhile after his IVIG therapy. Unfortunately his neurologist feels that his progress was just a coincidence and not the IVIG therapy that did it. She is the only one that feels that way. All of his therapists, other doctors, family & friends saw a big change in him and it was too soon after the therapy and too drastic after almost 1yr of regression and delays to be anything but the therapy. His walking had gotten better. Not up to what a "normal" 2yr old would be walking and doing things but definatly better than he was. His words and developmental age were getting better. Again not where he should be but much better than where he was.
A month or so ago we realized that he was having an increase in sensory problems. He was starting to have more falls. He knows when he is having a real bad day and uses his walker on his own. But, he doesn't show fear after a fall like a typical kid. He also doesn't seem to feel pain like a normal kid. If he cries after a fall then you can be sure he really got hurt. Around Christmas he started to have a lot more falls. He ended up with a fat & split lip with a blood blister on it plus a few bruises on his forehead all for his Christmas pictures.
Since the last posting his therapies have been increased. We had a Occupational therapy eval for all his sensory problems and his fine motor skills. They have said that he has alot of problems and needs to start therapy ASAP. They are trying to push that paper work through. That will be a minimum of 2 hrs/week. He has PT 1hr/week, developmental intervention 6hrs/week & speech 1hr/week. He is up to 10 hrs/week of therapy. Yet he is still a year behind in just about everything.
We are still trying to get in to the developmental pediatrician for the evaluation for autism. That needs to be either ruled in or out. He has alot of autistic traits but at the same time he has other things going on that have nothing to do with autism. His neuro dr seems to think that is what is going on now. Mind you she hasn't seen him since October. She only talked to me on the phone yesterday for 10 min and decided that the fact that he is getting worse and his walking is getting bad again is not ataxia or neuro problems but autism. We do have an appointment with the developmental dr but not until September 14, 2009. Our pediatrician called this dr and told him Connor's history and the developmental dr said he will see us before February and that Connor can not wait until September to be seen. Thank God for that. I don't know that I can wait that long to have this done.
We are in a holding pattern now and while we are playing this waiting game with the dr's Connor is slowly getting worse again. His speech is still better than we were but he is repeating things over and over again. They call that echolalia and it can be a symptom of alot of things. There has been a lot of upheaval in the house lately from some so called "friends" which I am sure has not helped Connor or his progress any. We are trying to overcome any damage caused by that. The holidays seemed to have also kind of upset the balance of things with Connor. I am hoping now that things are getting back to normal we may see some improvement with him again. I will post as soon as I have something new to tell. Hopefully we will get the developmental dr eval done soon. It would be real nice to have a diagnosis for him. Without that we don't have any idea of what kind of prognosis we are looking at. Keep Connor in your prayers please. He still needs all he can get.
A month or so ago we realized that he was having an increase in sensory problems. He was starting to have more falls. He knows when he is having a real bad day and uses his walker on his own. But, he doesn't show fear after a fall like a typical kid. He also doesn't seem to feel pain like a normal kid. If he cries after a fall then you can be sure he really got hurt. Around Christmas he started to have a lot more falls. He ended up with a fat & split lip with a blood blister on it plus a few bruises on his forehead all for his Christmas pictures.
Since the last posting his therapies have been increased. We had a Occupational therapy eval for all his sensory problems and his fine motor skills. They have said that he has alot of problems and needs to start therapy ASAP. They are trying to push that paper work through. That will be a minimum of 2 hrs/week. He has PT 1hr/week, developmental intervention 6hrs/week & speech 1hr/week. He is up to 10 hrs/week of therapy. Yet he is still a year behind in just about everything.
We are still trying to get in to the developmental pediatrician for the evaluation for autism. That needs to be either ruled in or out. He has alot of autistic traits but at the same time he has other things going on that have nothing to do with autism. His neuro dr seems to think that is what is going on now. Mind you she hasn't seen him since October. She only talked to me on the phone yesterday for 10 min and decided that the fact that he is getting worse and his walking is getting bad again is not ataxia or neuro problems but autism. We do have an appointment with the developmental dr but not until September 14, 2009. Our pediatrician called this dr and told him Connor's history and the developmental dr said he will see us before February and that Connor can not wait until September to be seen. Thank God for that. I don't know that I can wait that long to have this done.
We are in a holding pattern now and while we are playing this waiting game with the dr's Connor is slowly getting worse again. His speech is still better than we were but he is repeating things over and over again. They call that echolalia and it can be a symptom of alot of things. There has been a lot of upheaval in the house lately from some so called "friends" which I am sure has not helped Connor or his progress any. We are trying to overcome any damage caused by that. The holidays seemed to have also kind of upset the balance of things with Connor. I am hoping now that things are getting back to normal we may see some improvement with him again. I will post as soon as I have something new to tell. Hopefully we will get the developmental dr eval done soon. It would be real nice to have a diagnosis for him. Without that we don't have any idea of what kind of prognosis we are looking at. Keep Connor in your prayers please. He still needs all he can get.
Saturday, September 13, 2008
IVIG update 9/13
Connor went in on 9/2 to Children's Hospital to start his IVIG therapy. We got home late on Friday night 9/5. He handled everything pretty well. Connor had no major complications. He woke up during one treatment and freaked out. We aren't really sure what caused it. I think he was in pain of some kind because of the high pitch scream he was doing. They told us to watch for vomiting even though he did that right before we left there and they thought nothing of it. He has had a few more "freak outs" since we have been home but again I am really not sure what it means. He is completely out of control when it happens. He will only allow one of us to be near him or hold him at a time when he is going through this. I have some pretty major bruises from the last one we went through. He practically threw himself out of my arms. It was very scary to watch.
We met with a bunch of different dr's all over again while we were in there. We met with the metabolic team and the attending dr of the neuro floor. We were given a questionnaire to fill out because of Connor's developmental delays. They came back later to tell us that he failed the autism screening test on multiple levels. We now need to see a developmental pediatrician. I have been informed by our therapists that this will probably take about 1yr to get an appointment. The dr's also decided that if this does not work in about 1 months time we will start the process of getting him in for the muscle and skin biopsy. Connor also went through another overnight EEG. That lasted about 16hrs. Not the 48 hrs the other neuro dr wanted but at least it was better than just an office one. That came out fine. They didn't do the CAT scan for his liver because no one felt his liver this time. I would have felt better if they had done the CAT scan just to rule out a problem especially since there are 2 dr's on record that felt something. Connor also had a problem with his blood pressure while we were there. Actually he has had it happen quite a few times even before this hospital stay. His blood pressure went up to 154/90 at one point. It had been up and alarms going off many times and they would just come in and shut it off and say "he is really moving around in here, hu?" I would then tell them that he was sleeping and hadn't moved. They just blew that off too because IVIG lowers the blood pressure not raise it. I am going to be bringing that up to our pediatrician ASAP!
We were told that we could see results from the IVIG as early as 48hrs to 4 weeks. If after 4 weeks we don't see a change then they are going to call it quits with the IVIG. If we see results we can go through the process again in about 2 months. We have to go and see our pediatrician on Tues 9/16 for a follow up and to make sure he isn't having any of the other complications that we just can't see.
So far we haven't seen any thing to say that this is working. Physically, there has been no change. His choking has actually been a bit worse. Developmentally, Connor said his first word since this started that wasn't him just parroting!! He said "ball". His therapist has been working on this word since they started working with him. This week she held up the ball and he just said "ball". We are so excited. No one is taking this as a sign that the ivig worked yet because it is such a small step and we can't be sure if this is from the ivig or from the persistence of his developmental therapist. I still am holding out hope. We still have time. And I look forward to his physical therapy this week to see if we can see any improvement.
Connor's therapies through early intervention are coming up for a review already. I know that they are working on getting him a behavioral evaluation to see if behavioral therapy will help him, Physical therapy is looking for more time, developmental therapy wants more time with him and our social worker has told our case manager that speech therapy needs more time. In other words, Connor & I are going to be very busy!!!
Thank you for all the thoughts and prayers. I can't imagine how we would be handling all of this without the love and support we get from our family and friends (ones we know and the ones we just haven't met yet). I will post as soon as I can or sooner if there is anything new to tell you.
We met with a bunch of different dr's all over again while we were in there. We met with the metabolic team and the attending dr of the neuro floor. We were given a questionnaire to fill out because of Connor's developmental delays. They came back later to tell us that he failed the autism screening test on multiple levels. We now need to see a developmental pediatrician. I have been informed by our therapists that this will probably take about 1yr to get an appointment. The dr's also decided that if this does not work in about 1 months time we will start the process of getting him in for the muscle and skin biopsy. Connor also went through another overnight EEG. That lasted about 16hrs. Not the 48 hrs the other neuro dr wanted but at least it was better than just an office one. That came out fine. They didn't do the CAT scan for his liver because no one felt his liver this time. I would have felt better if they had done the CAT scan just to rule out a problem especially since there are 2 dr's on record that felt something. Connor also had a problem with his blood pressure while we were there. Actually he has had it happen quite a few times even before this hospital stay. His blood pressure went up to 154/90 at one point. It had been up and alarms going off many times and they would just come in and shut it off and say "he is really moving around in here, hu?" I would then tell them that he was sleeping and hadn't moved. They just blew that off too because IVIG lowers the blood pressure not raise it. I am going to be bringing that up to our pediatrician ASAP!
We were told that we could see results from the IVIG as early as 48hrs to 4 weeks. If after 4 weeks we don't see a change then they are going to call it quits with the IVIG. If we see results we can go through the process again in about 2 months. We have to go and see our pediatrician on Tues 9/16 for a follow up and to make sure he isn't having any of the other complications that we just can't see.
So far we haven't seen any thing to say that this is working. Physically, there has been no change. His choking has actually been a bit worse. Developmentally, Connor said his first word since this started that wasn't him just parroting!! He said "ball". His therapist has been working on this word since they started working with him. This week she held up the ball and he just said "ball". We are so excited. No one is taking this as a sign that the ivig worked yet because it is such a small step and we can't be sure if this is from the ivig or from the persistence of his developmental therapist. I still am holding out hope. We still have time. And I look forward to his physical therapy this week to see if we can see any improvement.
Connor's therapies through early intervention are coming up for a review already. I know that they are working on getting him a behavioral evaluation to see if behavioral therapy will help him, Physical therapy is looking for more time, developmental therapy wants more time with him and our social worker has told our case manager that speech therapy needs more time. In other words, Connor & I are going to be very busy!!!
Thank you for all the thoughts and prayers. I can't imagine how we would be handling all of this without the love and support we get from our family and friends (ones we know and the ones we just haven't met yet). I will post as soon as I can or sooner if there is anything new to tell you.
Thursday, August 28, 2008
8/28 IVIG APPROVED
We got a call on Monday night from our pediatrician. They harassed the ins co and after days of phone calls and some great dr's persistence...our ins co approved the IVIG therapy!!!!!!
We had an appointment with our neuro dr on Tuesday and we weren't sure of any of the details yet. We went prepared in case they put us right in to the hospital. Well nothing ever works out as planned so we are still waiting for our admission date. It looks right now as if it is going to be on Tuesday next week 9/2.
No one is sure if this is going to work or not. It is something that they are just trying. As our dr put it, this is something that if we didn't try we would always wonder what if. If this doesn't work then the next step is the muscle and skin biopsy. Our neuro dr is trying to set it up so that he will come see him while we are in the hospital. Connor will also be getting a full body CAT scan to check the liver enlargement and to see if that gives them any clues. They also want us to see a developmental pediatrician. Our neuro dr made a statement like "I don't know if Connor has truly regressed or if he has just developmentally plateaued". If he was doing something at 12 & 13 months old and he is not doing it now then that is a regression!! She also asked if I thought he was autistic. I told her that I have asked questions about it but only because he has autistic traits not because I think he is and every dr we have asked has said no!! What ever is causing his ataxia, balance, choking and speech problems is also what is causing the developmental problems.
We may not know ahead of time what day exactly we are going into the hospital so I may not be able to post again until we get home. I will update this site as soon as I possibly can. Please keep praying for Connor. We are real scared going into this. He could have some bad reactions and side effects. I pray we are making the right choice and that it will help him. Thank you everyone for your prayers. They mean more to us then we can possibly tell you.
We had an appointment with our neuro dr on Tuesday and we weren't sure of any of the details yet. We went prepared in case they put us right in to the hospital. Well nothing ever works out as planned so we are still waiting for our admission date. It looks right now as if it is going to be on Tuesday next week 9/2.
No one is sure if this is going to work or not. It is something that they are just trying. As our dr put it, this is something that if we didn't try we would always wonder what if. If this doesn't work then the next step is the muscle and skin biopsy. Our neuro dr is trying to set it up so that he will come see him while we are in the hospital. Connor will also be getting a full body CAT scan to check the liver enlargement and to see if that gives them any clues. They also want us to see a developmental pediatrician. Our neuro dr made a statement like "I don't know if Connor has truly regressed or if he has just developmentally plateaued". If he was doing something at 12 & 13 months old and he is not doing it now then that is a regression!! She also asked if I thought he was autistic. I told her that I have asked questions about it but only because he has autistic traits not because I think he is and every dr we have asked has said no!! What ever is causing his ataxia, balance, choking and speech problems is also what is causing the developmental problems.
We may not know ahead of time what day exactly we are going into the hospital so I may not be able to post again until we get home. I will update this site as soon as I possibly can. Please keep praying for Connor. We are real scared going into this. He could have some bad reactions and side effects. I pray we are making the right choice and that it will help him. Thank you everyone for your prayers. They mean more to us then we can possibly tell you.
Wednesday, August 20, 2008
UPDATE 8/20
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.
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, 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.
Wednesday, May 14, 2008
Update 5/14
I didn't realize how long it has been since I posted here. Sorry for that. It has been crazy. Connor had been sick with a real bad cold for over a week that required trips to the dr with a very cranky child. There isn't a whole lot new. We still don't have the results of the blood tests for the mitochondrial disease. I called the dr today because it has been over 5 weeks now. They have not called me back. Everything seems to be at a stand still.
We did have the evaluation with the early intervention team. Connor qualifies. I knew he was behind developmentally. You would have to be blind to not see that but I didn't realize how far behind. Once they gave me the numbers I cried. Here is how he tested (remember he is 19 months old when you see these numbers) :
Cognitive ( learning, play skills, problem solving) 6 - 13 months
Gross Motor (crawling, walking, moving) 12 months
Fine Motor (eye/hand coordination) 10 months
Communication (talking & understanding language) 3m responsive, 11m expressive
Social/Emotional (interactions with others & toys) 5-8 months
Self Help/ Adaptive (feeding, dressing, toileting) 8 months
As you can see he has had significant regression. We are scheduled for a eval meeting for 5/23 where we will set up a plan and start the therapy. The sooner the better as far as I am concerned. I feel it should have been started months ago. They also want him to wear a helmet for protection whenever he is on the floor walking. We are scheduled for a fitting on 5/20 for that. I have gotten some attitudes about that already from some people. How could I do that to my son? It is wrong of me to do this. I feel that whatever will keep him safe is the right thing to do so we are going ahead with it. He gets hurt enough now. We don't need him damaging his head and making things 100 times worse. Today he fell in his bed and cut his mouth open. He falls all the time and we are fighting to keep him safe till they figure things out.
Hopefully we will have some news on the blood tests soon. I plan on harassing them until they call me back. They will be getting phone calls from me on a daily basis until they get so sick of me that they will finally return my calls. I will post again as soon as something new develops.
Thursday, April 24, 2008
4/24 Update
Over the last 2 weeks or so things have been hectic. This is the first time I have had a chance to post. Last week we had 2 appointments. One was in Princeton at the neurologists office. We didn't seem to get anywhere with that one. If fact we left there feeling like we accomplished nothing. Our neuro dr seems to want to believe that this could still be a post viral cerebellitis. Even though it is way past time for this to have cleared up or at least started to. Granted, I would much prefer to believe that he has cerebellitis because it is much better than the mitochondrial disease theory. So, at this point she has decided to just wait. She knows that the metabolic team wants a spinal tap for some tests but she won't do it until they call her personally. She doesn't want it to be on her. They have to order it. She told us to make an appointment in July and she will see us then. I am supposed to keep a log of his staring spells in case he is having petite Mal seizures and call her. That's it. I asked her what she thought of the ataxia dr's idea of mitochondrial disease and she just answered "I don't know". On Friday last week we had to go to CHOP for the speech/swallow eval. Another waste of time in my mind. They were giving us ideas on how to switch him to more adult food (not a concern of mine at all) and that it wasn't too dangerous for him to eat at this point. Of course he didn't choke for them at all so they never got to see what happens on a weekly basis. I was informed that they think it has to do with what ever is wrong with him (really! who would have guessed?!). Then they brought in a psychologist to tell us that she doesn't think he is faking the choking to get out of eating (where the hell did I ever say that? We could have told them that and not cost the ins co over $200!)
Tuesday we went for our follow up at the pediatrician's office. That was just to catch her up and make sure he is at least not getting worse. She wants us to get some blood work next time we go to CHOP. The metabolic team faxed her the script of stuff they want done. We were supposed to get it done when we went to the ataxia clinic but they maxed out the amount of blood that they could take from him in one day. We don't have to see her again now for 1 month unless he gets worse or we need her. I have to call her as soon as I get the results from the ataxia dr.
I started the process of getting therapy for Connor in the house. The dr's want him to get physical, occupational & speech. Now I am just waiting for them to come out to the house to evaluate him. To qualify for this program he needs to be 35% deficient in one area or 25% deficient in 2 or more areas. Our dr's don't seem to think we will have any problem qualifying for this. Financially we qualify for free services Thank God we won't have to pay a per hour co pay. So, now we wait. After the eval they will come back and tell us if he qualifies and then set up goals with us and from there get the therapists out here. If he doesn't qualify then they will direct us where to go to get him the help he needs. Most likely if he doesn't qualify then he won't get the therapy at home and it won't be free. I don't see how he can't meet there idea of qualifying. Not with how behind he is now.
We are waiting for the mitochondrial results now and everything seems to be on hold with that. As soon as I hear anything I will post to fill everyone else in. Keep the prayers coming for Connor please.
Thursday, April 10, 2008
EMG & Ataxia clinic 4/8
Tuesday was a real rough day. It has taken me this long to get myself together enough to write this. Connor got his EMG @ 9. That was hard on him and hard on us to watch him go through it. That test came out negative. We went straight to the ataxia clinic just like I was told to do. No one ever called me back when I tried straightening out the 3:15 appointment. I decided that I was going to go ahead just like I never knew about the 3:15 time. Let them try to blow me off to my face. Joe was a little concerned that I was going to end up arrested if they tried making us wait for our appointment but I was determined that they were going to see him and he was not going to wait 6 hrs or so between appointments.
We got to the ataxia clinic around 10 and around 10:30 we were called up and told that the dr was going to try to get there before 12 so why don't we go get something to eat. That was fine with us. We were hungry and thirsty by that time. We got back just before 12 and we were seen by 12:15. I really like this dr. There was just something about him that made me feel like we were going to get somewhere with him. He thinks he knows what Connor has. He isn't sure but he thinks he has something called a Mitochondrial disease. There are 40 different kinds and we aren't sure what kind he has if this is it. There is no cure and no good treatment for this. The progression of this disease is anywhere from mild to fatal depending on which of the 40 he would have. There is a test for this but it has alot of false negatives. Even if he has this disease the test only picks it up about 30% of the time. It takes up to 5 weeks to get the results back.
We went and had the blood test done as soon as we were done at the clinic and all we can do now is wait. If this test comes back negative then the next step is a muscle biopsy. I am waiting to hear from this dr about a clotting disorder that could run in our family to see if he thinks it could have anything to do with what is going on with Connor and if we need to pursue it. He doesn't think so off the top of his head but like he said outside of the mitochondrial diseases this is the only other clue he has.
At this point we don't even know what to think or what to hope for. The dr really did floor us with this news. He seems to really think that this is what is going on with him though. After looking it up myself I have to say that it does seem to answer most of the problems that Connor has had that all the other ideas didn't. It seems the most plausible than any of the other things he has been tested for. Please keep him in your prayers. He really needs them.
We got to the ataxia clinic around 10 and around 10:30 we were called up and told that the dr was going to try to get there before 12 so why don't we go get something to eat. That was fine with us. We were hungry and thirsty by that time. We got back just before 12 and we were seen by 12:15. I really like this dr. There was just something about him that made me feel like we were going to get somewhere with him. He thinks he knows what Connor has. He isn't sure but he thinks he has something called a Mitochondrial disease. There are 40 different kinds and we aren't sure what kind he has if this is it. There is no cure and no good treatment for this. The progression of this disease is anywhere from mild to fatal depending on which of the 40 he would have. There is a test for this but it has alot of false negatives. Even if he has this disease the test only picks it up about 30% of the time. It takes up to 5 weeks to get the results back.
We went and had the blood test done as soon as we were done at the clinic and all we can do now is wait. If this test comes back negative then the next step is a muscle biopsy. I am waiting to hear from this dr about a clotting disorder that could run in our family to see if he thinks it could have anything to do with what is going on with Connor and if we need to pursue it. He doesn't think so off the top of his head but like he said outside of the mitochondrial diseases this is the only other clue he has.
At this point we don't even know what to think or what to hope for. The dr really did floor us with this news. He seems to really think that this is what is going on with him though. After looking it up myself I have to say that it does seem to answer most of the problems that Connor has had that all the other ideas didn't. It seems the most plausible than any of the other things he has been tested for. Please keep him in your prayers. He really needs them.
Friday, April 4, 2008
4/4/08 CHOP appointment
Yesterday we had a 1:30 appointment with the ophthalmologist. They were to check for a condition that I couldn't find out much about. It looked like it was some type of cancer but I am not sure. Connor does NOT have it. Thank God! The dr there said before he dilated his eyes that they didn't think it was what Connor had because as long as he has had all his symptoms then he would be blind by now if that was what it was. His eyes are fine with no clues as to what is going on with him.
It was a very long day. Between traffic and construction, we left the house by 11:30am and did not get home until after 6:15pm. This has to end soon because we are all feeling mighty frayed around the edges. Poor Connor sitting in a car seat for hours on end with only doctors and tests in between has had enough and so have the rest of us.
We are supposed to be going back on Tuesday 4/8. He has to go to Pennsylvania University Hospital for an EMG and then right over to CHOP to see the Ataxia dr. The EMG appointment was supposed to be at 10:30 but the ataxia team wanted to see him that day and they were trying to squeeze him in before the clinic started. They told me to go ahead with the EMG and hopefully they would still be able to still see him. But, they couldn't promise. It all depended on the timing. So, I moved Connor's EMG appointment up to 9:00 so that we could make sure that the ataxia team would get to see him. We got home last night to a recorded message that his ataxia appointment was at 3:15. I was mad. I moved an appointment up and we are having trouble getting Julia off to school because of it and now we don't have an appointment till 3:15?? What am I supposed to do with Connor for the 5hrs or so between appointments? I called them this morning to try and straighten it out and the receptionist didn't know anymore than that the appointment is in the book for 3:15. She took a message and I am waiting for the nurse to call me back about it. Then the EMG place calls me up to tell me I need 2 referrals for this appointment (I don't & we got that fixed) but then she tells me that I have an appointment for 8:30am!! There is no way we can make that. As it is we were going to have a hard time getting there for the 9am appointment. They are trying to see if anyone will switch appoint times with us. I am waiting for a call back about that.
So, for now Tuesday is up in the air. We know nothing new except more things that Connor doesn't have. The speech/ swallow eval is not until 4/19 and the metabolic team isn't getting us in until 6/24. Connor is still the same no improvement and not getting any worse. He is exactly the same including developmentally. He has not gained any ground in that department at all. I am still trying to get all the therapies set up for him but the way our appointments are spaced that has not been easy.
I will keep everyone posted as things progress.
It was a very long day. Between traffic and construction, we left the house by 11:30am and did not get home until after 6:15pm. This has to end soon because we are all feeling mighty frayed around the edges. Poor Connor sitting in a car seat for hours on end with only doctors and tests in between has had enough and so have the rest of us.
We are supposed to be going back on Tuesday 4/8. He has to go to Pennsylvania University Hospital for an EMG and then right over to CHOP to see the Ataxia dr. The EMG appointment was supposed to be at 10:30 but the ataxia team wanted to see him that day and they were trying to squeeze him in before the clinic started. They told me to go ahead with the EMG and hopefully they would still be able to still see him. But, they couldn't promise. It all depended on the timing. So, I moved Connor's EMG appointment up to 9:00 so that we could make sure that the ataxia team would get to see him. We got home last night to a recorded message that his ataxia appointment was at 3:15. I was mad. I moved an appointment up and we are having trouble getting Julia off to school because of it and now we don't have an appointment till 3:15?? What am I supposed to do with Connor for the 5hrs or so between appointments? I called them this morning to try and straighten it out and the receptionist didn't know anymore than that the appointment is in the book for 3:15. She took a message and I am waiting for the nurse to call me back about it. Then the EMG place calls me up to tell me I need 2 referrals for this appointment (I don't & we got that fixed) but then she tells me that I have an appointment for 8:30am!! There is no way we can make that. As it is we were going to have a hard time getting there for the 9am appointment. They are trying to see if anyone will switch appoint times with us. I am waiting for a call back about that.
So, for now Tuesday is up in the air. We know nothing new except more things that Connor doesn't have. The speech/ swallow eval is not until 4/19 and the metabolic team isn't getting us in until 6/24. Connor is still the same no improvement and not getting any worse. He is exactly the same including developmentally. He has not gained any ground in that department at all. I am still trying to get all the therapies set up for him but the way our appointments are spaced that has not been easy.
I will keep everyone posted as things progress.
Wednesday, March 19, 2008
3/19 update
Yesterday we had an appointment with Connor's pediatrician and she was upset to see that he hasn't gotten any better. She is also very concerned with the fact that he hasn't regained any words and that he seems to be choking and throwing up alot. She told us that she was going to call our neuro dr today and the metabolic team and then get back to us. As of now Connor will not be receiving any more vaccinations until we get a handle on what is going on. She doesn't want to complicate things or make them worse.
This morning she called me before 10am. She still had a call out to the metabolic team but she did speak to our neuro dr. Seems that they have decided that there might be something more than cerebelitis going on. Connor has had the ataxia (what they call the kind of walking he is doing) for long enough that it is now being considered chronic. He has had it too long now for it to be considered acute. That seems to have changed things in their minds. Our pediatrician is getting another speech/swallowing eval. They want to find out what is going on that he has reverted to almost infantile type swallowing problems. He spits up alot, vomits & chokes. All things infants do. He never really did it before this all started. I am waiting to hear about that and when it has been set for. But, once again a trip to CHOP. Our neuro dr also told her about an ataxia clinic in CHOP. They only deal with obscure and rare causes of ataxia. Our neuro dr wants Connor to be evaluated by them. My question was "why is this the first time we are hearing about this team? and why haven't they been brought in sooner?"
I no sooner got off the phone with the pediatrician when I got a call from the neuro dr's office. They set us up with an appointment for April 15th. At first I was upset that it was so going to take so long. That was until I talked to the DR who they put on the phone next. She explained to me that they were trying to get Connor into the ataxia clinic but that appointment won't be for at least 4-6 weeks. Then she told me about all she wants done in the meantime before our appointment with her. We need to get an ophthalmology appoint to check for some thing I won't even try to spell here. I can't find much on it but from what I did find it looks like a type of cancer. Then we need an appointment with the metabolic team. They told me they didn't believe this was metabolic and never mentioned another appointment but their report to our neuro dr says different. Then we need another blood test to test for amino acids. Connors levels were high but they aren't sure if he had eaten before the test or not (I don't think he did but they want to be sure). They won't tell me what it will mean if this is high and I haven't had a chance to look that one up yet. Then he needs to get an EMG. I don't remember what that stands for but they are looking to see it the electrical current from the nerves are getting through to the muscles right. Plus, we still have the speech/swallow eval.
I asked the nurse if there was anyway to put Connor in the hospital so we can get this all done in a day or 2 because on a good day it is at least 3hrs round trip. She told me that our insurance won't cover it. So, we have alot of traveling, missed days of work for Joe and stress coming up. I am trying to get the appointments together or at least get 1 or 2 on the same day but so far that hasn't been working too well. I will keep everyone updated as we progress through this nightmare. We will deal with the stress & financial mess if only we can find out what is wrong with Connor and how to fix it. It is going through all of this and still not knowing that is really killing us.
This morning she called me before 10am. She still had a call out to the metabolic team but she did speak to our neuro dr. Seems that they have decided that there might be something more than cerebelitis going on. Connor has had the ataxia (what they call the kind of walking he is doing) for long enough that it is now being considered chronic. He has had it too long now for it to be considered acute. That seems to have changed things in their minds. Our pediatrician is getting another speech/swallowing eval. They want to find out what is going on that he has reverted to almost infantile type swallowing problems. He spits up alot, vomits & chokes. All things infants do. He never really did it before this all started. I am waiting to hear about that and when it has been set for. But, once again a trip to CHOP. Our neuro dr also told her about an ataxia clinic in CHOP. They only deal with obscure and rare causes of ataxia. Our neuro dr wants Connor to be evaluated by them. My question was "why is this the first time we are hearing about this team? and why haven't they been brought in sooner?"
I no sooner got off the phone with the pediatrician when I got a call from the neuro dr's office. They set us up with an appointment for April 15th. At first I was upset that it was so going to take so long. That was until I talked to the DR who they put on the phone next. She explained to me that they were trying to get Connor into the ataxia clinic but that appointment won't be for at least 4-6 weeks. Then she told me about all she wants done in the meantime before our appointment with her. We need to get an ophthalmology appoint to check for some thing I won't even try to spell here. I can't find much on it but from what I did find it looks like a type of cancer. Then we need an appointment with the metabolic team. They told me they didn't believe this was metabolic and never mentioned another appointment but their report to our neuro dr says different. Then we need another blood test to test for amino acids. Connors levels were high but they aren't sure if he had eaten before the test or not (I don't think he did but they want to be sure). They won't tell me what it will mean if this is high and I haven't had a chance to look that one up yet. Then he needs to get an EMG. I don't remember what that stands for but they are looking to see it the electrical current from the nerves are getting through to the muscles right. Plus, we still have the speech/swallow eval.
I asked the nurse if there was anyway to put Connor in the hospital so we can get this all done in a day or 2 because on a good day it is at least 3hrs round trip. She told me that our insurance won't cover it. So, we have alot of traveling, missed days of work for Joe and stress coming up. I am trying to get the appointments together or at least get 1 or 2 on the same day but so far that hasn't been working too well. I will keep everyone updated as we progress through this nightmare. We will deal with the stress & financial mess if only we can find out what is wrong with Connor and how to fix it. It is going through all of this and still not knowing that is really killing us.
Monday, March 17, 2008
SCAN RESULTS
Some good news for a change. The results of the scan came back negative!!!! Now that is a mixed blessing. Thank God that he doesn't have cancer. But at the same time we still don't know what he does have. I am getting very frustrated. I don't even know where to go with this now. I am waiting for the Dr's office to call me back about what we do now. I called them this afternoon and asked if they had heard anything. The receptionist said she saw something come through with Connor's name on it but she wasn't sure what it was. I waited for over an hour for someone to call me back. Our Neuro's nurse called back to tell me the great news and said that there are no plans as to what to do right now. Our Dr just got the metabolic teams report and was reading that to see if there is something that they suggest that hasn't been tested for yet. So, we wait. AGAIN!!
We go to see our pediatrician tomorrow and I am hoping she will agree with us that enough is enough and it is time to try the steroid treatment or the IVIG therapy. If she does she will call the neuro Dr and hopefully get things moving. The Dr's listen to other Dr's alot better than a parent.
We thank you for all the prayers Connor has received lately from the bottom of our hearts. Those of you sending the prayers and well wishes to us we are going to print them up in a book so that we can show Connor one day how many people pulled together to pray and care about him. I will post as soon as I have anymore news or info. We love you all!!
We go to see our pediatrician tomorrow and I am hoping she will agree with us that enough is enough and it is time to try the steroid treatment or the IVIG therapy. If she does she will call the neuro Dr and hopefully get things moving. The Dr's listen to other Dr's alot better than a parent.
We thank you for all the prayers Connor has received lately from the bottom of our hearts. Those of you sending the prayers and well wishes to us we are going to print them up in a book so that we can show Connor one day how many people pulled together to pray and care about him. I will post as soon as I have anymore news or info. We love you all!!
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