Well, we visited with Dr Duke today.
The short story, he agrees Landon's lambdoid suture is fused. He even gave us some copies of images from his CT scan, and it is very easy for us to see that the plates are fused on his left side.
The long story....Dr Duke's PA came in (after we waited for over an hour) and asked us what our concerns were. SERIOUSLY? (Let me remind you we have left numerous messages for both the Dr and PA. We also had sent the radiology report and CD of images to them and were told they had been reviewed. So, I was just a little annoyed when we were greeted as if our child had a cold or something). She looked at his head for a few seconds (maybe 30), felt around, and said he would be in shortly. Another 15 minutes later Dr Duke came in. He started by saying his head shape was very consistent with the shape you would see with positional molding (what he originally said it was in Dec 09) and asked if he was rolling and in what position he was sleeping. I told him Landon has been on his belly for months and we did encourage it around 4 months because he himself told us that keeping him off that flat side would help him head improve. (Shhh...don't tell anyone I let my baby sleep on his belly).He said that he believed Landon's head shape was in fact due to positional molding. He gave us many reasons to support his claim, which I will not argue. Landon's left ear (the side that has the flatness from the fused suture) is slightly towards the front compared to his right ear. In Lambdoid Synostosis, the ear on the fused side would be pulled towards the back and slightly lower than the other ear. He also said that you would almost always find a large bump behind this same ear. Landon does not have the bump. Basically these are the reason's he concluded we were dealing positional molding. He said he will see literally thousands of cases of positional molding to every case of Lambdoid Synostosis. He has seen 3 cases of Lambdoid during his 20 years of practicing neurosurgery. Then he acknowledged the CT and said that it is the "tell all", and it does show that Landon's left Lambdoid suture is fused. He suggested that the fusion was a secondary, independent issue to the positioning molding. When I asked if he was suggesting that the suture fused since we saw him in December, he would not say yes or no. I asked him what month of Landon's life was he thinking the fusion happened, and he could not answer. In my gut, I think it has been fused since birth, and it was just missed. We might never know either way.
Dr Duke seemed to be pretty consistent as Dr Fearon with the ideas of surgery and timing. Dr Duke and Dr Fearon both will let us use private blood donors and feel there is a benefit to doing so. However, Dr Duke uses screw and wires that would stay in Landon's head, Dr Fearon uses only material that the body will absorb. We feel more comfortable with the later. The good news....they both agree the best time for surgery is between 8-12 months of age. So, thankfully, our misdiagnosis has not harmed Landon. His brain is growing and as of now it does not seem to be under pressure from his skull. Thank god!
We have an appointment with Dr Duke's plastic surgeon friend on April 15th. We are not sure if we want to meet this doctor knowing we are very confident with Dr Fearon and his team. I am keeping an open mind, and might keep the appointment as just another resource.
We did not really learn anything new today. But, we are happy with how the appointment went. We needed reassurance that he believed the suture was in fact closed so we could let go of the false hope that we were misdiagnosed again. If he could have stayed firm with his originally thoughts, we would be dealing with much more stress of finding a 3rd opinion and visiting who knows how many more doctors until we felt convinced of what we were dealing with.
I am so, so, so thankful for our wonderful pediatrician who doubted Dr Duke's diagnosis. Duke is a wonderful hospital with some of the best doctors in the world. Our ped did not have to question his diagnosis like he did, and we will forever be grateful. I want to do something to show our appreciation. We are not sure what would be appropriate. A card seems so small. Maybe a gift card, flowers, I have no clue. I would love some suggestions if you can think of anything. Please leave a comment to this post below and let me know if you have any ideas of a way we can show our gratitude to our wonderful doctor! Thanks!
Tuesday, March 30, 2010
Duke Appointment Today
We are headed to Duke today at 12:30. I am trying to be open minded, and see what the doctor has to say. This is the same doctor we saw in December, who said that his skull was not fused (based on a physical exam). He sent us away. He told us that his head would correct itself. He said he did not need to schedule a follow up. He said that he was sure. He was wrong.
Dr Duke (as I will call him) was given a copy of the radiology report on March 10th, stating that Landon's lambdoid sutre was fused. We also overnight him a copy of the CT scan images and left several voicemails for him and his PA. I was finally able to get his assistant on the phone about a week later, and she said he still felt the suture was NOT fused and saw no reason to bring us in any sooner than our scheduled appointment on March 30.
So here we are....almost 3 weeks later. I just want an explanation. I understand human error, and I understand this is a rare condition. However, I DO NOT understand why we were treated the way we were. I am very anxious to find out what he has to say.
Dr Duke (as I will call him) was given a copy of the radiology report on March 10th, stating that Landon's lambdoid sutre was fused. We also overnight him a copy of the CT scan images and left several voicemails for him and his PA. I was finally able to get his assistant on the phone about a week later, and she said he still felt the suture was NOT fused and saw no reason to bring us in any sooner than our scheduled appointment on March 30.
So here we are....almost 3 weeks later. I just want an explanation. I understand human error, and I understand this is a rare condition. However, I DO NOT understand why we were treated the way we were. I am very anxious to find out what he has to say.
Thursday, March 25, 2010
Confirmed
Dr Fearon called us this evening. He received and reviewed the CT scan and confirmed that Landon's Lambdoid suture is closed and that he will need surgery. I asked him if he had any doubts, and he said no. This is all now becoming so real. We have been given the Craniosynostosis diagnosis by 3 independent doctors.
We talked for about 45 minutes and he answered all of my questions. We talked about his rate of blood transfusions which is much lower than the national average which ranges from 90-100% of patients needing a transfusion. His rate is only 19%. He believes his rate is much lower due to the steps he takes to reduce blood loss. Landon will be given Procrit Injections before surgery to increase his red blood cells before surgery. He will also recycle Landon's own blood, and he will be given that first, if he starts to lose too much blood. He also mentioned we will have the option of using a private blood donor if we prefer over a blood bank. This is something that we would plan for ahead of time, so the blood was there on hand, in the case he needed a transfusion.
We also talked about how the week of surgery will go. Basically the day before surgery we will have about 6 hours of pre-op stuff at the hospital. After surgery, he will be in the PICU for a few days, and then moved to a regular floor. We could be cleared to go home as soon as 6 days.
We will have follow up appointments 6 weeks, 12 months, and 2 years post surgery. Then at ages 5, 10, and 16. His first MRI will be at the 12 month visit.
I have tons of faith in Dr Fearon already and we have not even met him in person. I am amazed that in 11 short days since finding this doctor, he has showed so much sincerity and concern for our little boy. He welcomed us to call or email at any time with any questions.
We have our appointment in Dallas to meet Dr Fearon on May 10th! Booked our flights tonight, and we are very excited to visit some wonderful friends while we are there.
We talked for about 45 minutes and he answered all of my questions. We talked about his rate of blood transfusions which is much lower than the national average which ranges from 90-100% of patients needing a transfusion. His rate is only 19%. He believes his rate is much lower due to the steps he takes to reduce blood loss. Landon will be given Procrit Injections before surgery to increase his red blood cells before surgery. He will also recycle Landon's own blood, and he will be given that first, if he starts to lose too much blood. He also mentioned we will have the option of using a private blood donor if we prefer over a blood bank. This is something that we would plan for ahead of time, so the blood was there on hand, in the case he needed a transfusion.
We also talked about how the week of surgery will go. Basically the day before surgery we will have about 6 hours of pre-op stuff at the hospital. After surgery, he will be in the PICU for a few days, and then moved to a regular floor. We could be cleared to go home as soon as 6 days.
We will have follow up appointments 6 weeks, 12 months, and 2 years post surgery. Then at ages 5, 10, and 16. His first MRI will be at the 12 month visit.
I have tons of faith in Dr Fearon already and we have not even met him in person. I am amazed that in 11 short days since finding this doctor, he has showed so much sincerity and concern for our little boy. He welcomed us to call or email at any time with any questions.
We have our appointment in Dallas to meet Dr Fearon on May 10th! Booked our flights tonight, and we are very excited to visit some wonderful friends while we are there.
Thursday, March 18, 2010
Dr Fearon called!!
Mom and I took all 3 boys to Indiana for a week to visit family. It will be a nice distraction. We left James at home, with some beer, the remote, and plans to play golf. I told him to enjoy his sleep! Ha!
On the drive up today the boys did great! We made the 835 mile drive in just about 14.5 hours, and only had to stop every 4 hours! When we were about 3 miles from our hotel, my phone range and it was Dr Fearon! I was so excited to hear from him because I was expecting a return email, not a call. The babies were so ready to get out and starting to fuss, so mom pulled over so I could get out and talk to him on the side of the road. It was so windy that I had a hard time hearing him, but he was so patient with me and we talked for about 15 minutes. He was wonderful and we are going to have a conference call next week so James can be on the line as well.
He says based on what I emailed him, he does believe it is Lambdoid, however won't be sure until he receives the CT scan. I believe we are going to cancel our appt at the Mayo Clinic and go to Dallas in the next several weeks. Dr Fearon seems to have the most experience with this. He said he believe he has done the most surgeries in the US with Craniosynostosis. I asked him as the most experienced, how many cases of Lambdoid has he seen and he said....about a dozen. It is that rare.
So....we have a lot of answered questions that are coming to us by the hour, but this is what we do know. He will do the surgery between 10-11 months. So that would be sometime between June 27 and July 27. He said that he would have a team including him (craino surgeon), a pediatric neurosurgeon, a pediatric anesthesiologist, and a team of nurses. Landon will be in the PICU for 2 days, possibly be release on day 3-4 and then be able to fly on day 5-6. It is all so overwhelming to think about, but basically they will do a zig zag cut ear to ear along the top of his head. They will remove and rebuild his skull and replace it. They also have to overcompensate the shape, because his head is not done growing, and they do this reduce the chance a 2nd surgery is needed. Hopefully he will not have to have a blood transfusion, but it is common. He will need regular MRIs until he is 16 to be sure the brain does not try to grown down into a hole in the skull when the spinal cord exits his brain.
So this is what we know as of now. Please keep praying! It is just so much to take in, but we are dealing with it by staying busy and learning as much as we can!
On the drive up today the boys did great! We made the 835 mile drive in just about 14.5 hours, and only had to stop every 4 hours! When we were about 3 miles from our hotel, my phone range and it was Dr Fearon! I was so excited to hear from him because I was expecting a return email, not a call. The babies were so ready to get out and starting to fuss, so mom pulled over so I could get out and talk to him on the side of the road. It was so windy that I had a hard time hearing him, but he was so patient with me and we talked for about 15 minutes. He was wonderful and we are going to have a conference call next week so James can be on the line as well.
He says based on what I emailed him, he does believe it is Lambdoid, however won't be sure until he receives the CT scan. I believe we are going to cancel our appt at the Mayo Clinic and go to Dallas in the next several weeks. Dr Fearon seems to have the most experience with this. He said he believe he has done the most surgeries in the US with Craniosynostosis. I asked him as the most experienced, how many cases of Lambdoid has he seen and he said....about a dozen. It is that rare.
So....we have a lot of answered questions that are coming to us by the hour, but this is what we do know. He will do the surgery between 10-11 months. So that would be sometime between June 27 and July 27. He said that he would have a team including him (craino surgeon), a pediatric neurosurgeon, a pediatric anesthesiologist, and a team of nurses. Landon will be in the PICU for 2 days, possibly be release on day 3-4 and then be able to fly on day 5-6. It is all so overwhelming to think about, but basically they will do a zig zag cut ear to ear along the top of his head. They will remove and rebuild his skull and replace it. They also have to overcompensate the shape, because his head is not done growing, and they do this reduce the chance a 2nd surgery is needed. Hopefully he will not have to have a blood transfusion, but it is common. He will need regular MRIs until he is 16 to be sure the brain does not try to grown down into a hole in the skull when the spinal cord exits his brain.
So this is what we know as of now. Please keep praying! It is just so much to take in, but we are dealing with it by staying busy and learning as much as we can!
Wednesday, March 17, 2010
A New Doctor
I found a wonderful support site called Cranio Kids. Through this site, I also found a new Doctor for Landon out of Dallas, TX. We originally had scheduled a 2nd opinion at the Mayo Clinic for April 22nd. After reading around on Craino Kid's message board, I kept seeing the name Dr Fearon out of Medical City Children's Hospital, and felt lead to check him out. I called his office yesterday, and was given his email, and plan to email him this evening. We also ordered extra copies of Landon's CT scan to send to him and a few to have on hand for other doctors if necessary. At this point, we are just trying to find the very BEST doctor out there for Landon. Because Lambdoid Synostosis is so rare, it is hard to find a doctor who has even done this type of surgery. From what I have read, Dr Fearon is one of the most, if not the most, experienced doctors when dealing with Craniosynostosis.
Please continue to pray for sweet Landon. I am still holding out hope that this is a misdiagnosis.
Please continue to pray for sweet Landon. I am still holding out hope that this is a misdiagnosis.
Tuesday, March 16, 2010
The beginning
On Aug 27, 2009 we welcomed our 2nd and 3rd sons into the world, Landon and Grayson! My pregnancy and delivery was a text book case. I had no complications at all, and the boys had to be "kicked out" at 38 weeks weighing in at 6.9 and 6.7. They were born happy and healthy!
While in the hospital I noticed the back of Landon's head was shaped a little different. I remember asking one of the rotating pediatricians about it, and they said that it was from his positioning in utero. I also noticed that one of his ears were slightly farther back and lower than the other and that he had a very defined ridge on the top left side of his head. I kept this to myself because I felt shame for noticing these minor flaws on my perfect, beautiful little boy.
We left the hospital after 5 days and life as a family of 5 began. At the boys one month checkup we were not able to see our normal pediatrician, so we saw another doctor at the practice. We had a list of questions as most new parents do. One this list was our concern about Landon's head shape. When looking at Landon from the front, it was slowly growing more noticeable and when you turned him around, you could see that the top right side of his head was growing "up" and the back left side of his head was flat. This doctor also dismissed our concerns and said he must sleep in that position a lot. I remember feeling a little defensive because I knew that his head shape was not as a result from being left on his back for long periods of time. We moved on to the other questions on our list.
The next month passed and his head shape was no longer a major concern for us. In hindsight, I think we became used to the shape and did not notice that it was changing, because he head was growing. At their 2 month checkup we were able to see our regular doctor. Once again we had a list of questions, this time, his head shape was not on that list. When the doctor came in he noticed Landon’s head in the first few seconds and said he wanted to refer us to the neurosurgeon at Duke University Hospital. He gave me two terms; Craniosynostosis and Plagiocephaly. He briefly described each. He said that Craniosynostosis is when one or more of the sutures of a baby’s skull fuse prematurely. He said he was hoping it was the later, which is basically positioning molding that would fix itself in the first years of life. Either way, this is probably the result of Landon being head down in the womb for several weeks due to the small space he shared with his twin brother. We were scheduled for our appointment at Duke 4 long weeks later.
Our appointment day came and our nerves were at an all time high. Somehow the past weeks had flow by and we did not let ourselves think about the “what if’s”. I can honestly say that I did not once Google “Craniosynostosis”. When we got to Duke I was overcome with emotion. We were faced with a huge reality check when we saw dozens of very sick children at the Hospital. I felt like I needed to just hug by boys and realized how much we have to be thankful for.
When we were finally called back, we first saw a nurse who took all his stats, weight, length, and temp. We only waited a few minutes and the Dr came in. He looked at Landon for about 10 seconds, touched his head once, and said that his head shape is from positioning and labeled it “Plagiocephaly”. Great news! He told us we just needed to keep repositioning him and try to keep him off that flat side. Easier said than done with a 3 month old. He gave us some good ideas, and said goodbye. He said there was no need to a follow up. We could breath, this was behind us.
Little did we know…
At the weeks past, my mom, asked about Landon’s head on more than one occasion. She was concerned. We also received expressed concern from our older son, Aidan’s, therapists. We felt very confident in what we were told by the neurosurgeon at Duke, and would explain to everyone that it would correct itself over time. We did not see what they all saw though, it was getting worse. Since we see him every day, it is hard for us to notice the change. We are also so used to it now, that we don’t look at him and see that he head shape is not normal.
Before we knew it the boys were 6 months old. It was time once again to visit the pediatrician. This time, my list included the growing concern about Landon’s head. When our doctor walked in, I did not even have time to get to my list. His first words to me were “We need to get a second opinion on his head”. He ordered a CT scan the next morning. Landon did great during the scan. He did not need to be sedated, and laid perfectly still during the seconds long process. I left with 2 copied of cd’s containing his images, and with the knowledge that the Radiology Report would be faxed to both our pediatrician and the Dr at Duke. About an hour about we left the CT scan, I received a call from our pediatrician. He had already gotten the results and already called Duke. He explained that the Radiology Report confirmed that Landon had Craniosynostosis. His left Lambdoid was fused. He needed surgery.
Lambdoid Synostosis is the rarest form of Craniosynostosis and occurs in every 1 in 100,000 births.
This brings us to present day. We currently have a follow up appointment scheduled at Duke and a 2nd opinion scheduled at the Mayo Clinic in Rochester, MN.
While in the hospital I noticed the back of Landon's head was shaped a little different. I remember asking one of the rotating pediatricians about it, and they said that it was from his positioning in utero. I also noticed that one of his ears were slightly farther back and lower than the other and that he had a very defined ridge on the top left side of his head. I kept this to myself because I felt shame for noticing these minor flaws on my perfect, beautiful little boy.
We left the hospital after 5 days and life as a family of 5 began. At the boys one month checkup we were not able to see our normal pediatrician, so we saw another doctor at the practice. We had a list of questions as most new parents do. One this list was our concern about Landon's head shape. When looking at Landon from the front, it was slowly growing more noticeable and when you turned him around, you could see that the top right side of his head was growing "up" and the back left side of his head was flat. This doctor also dismissed our concerns and said he must sleep in that position a lot. I remember feeling a little defensive because I knew that his head shape was not as a result from being left on his back for long periods of time. We moved on to the other questions on our list.
The next month passed and his head shape was no longer a major concern for us. In hindsight, I think we became used to the shape and did not notice that it was changing, because he head was growing. At their 2 month checkup we were able to see our regular doctor. Once again we had a list of questions, this time, his head shape was not on that list. When the doctor came in he noticed Landon’s head in the first few seconds and said he wanted to refer us to the neurosurgeon at Duke University Hospital. He gave me two terms; Craniosynostosis and Plagiocephaly. He briefly described each. He said that Craniosynostosis is when one or more of the sutures of a baby’s skull fuse prematurely. He said he was hoping it was the later, which is basically positioning molding that would fix itself in the first years of life. Either way, this is probably the result of Landon being head down in the womb for several weeks due to the small space he shared with his twin brother. We were scheduled for our appointment at Duke 4 long weeks later.
Our appointment day came and our nerves were at an all time high. Somehow the past weeks had flow by and we did not let ourselves think about the “what if’s”. I can honestly say that I did not once Google “Craniosynostosis”. When we got to Duke I was overcome with emotion. We were faced with a huge reality check when we saw dozens of very sick children at the Hospital. I felt like I needed to just hug by boys and realized how much we have to be thankful for.
When we were finally called back, we first saw a nurse who took all his stats, weight, length, and temp. We only waited a few minutes and the Dr came in. He looked at Landon for about 10 seconds, touched his head once, and said that his head shape is from positioning and labeled it “Plagiocephaly”. Great news! He told us we just needed to keep repositioning him and try to keep him off that flat side. Easier said than done with a 3 month old. He gave us some good ideas, and said goodbye. He said there was no need to a follow up. We could breath, this was behind us.
Little did we know…
At the weeks past, my mom, asked about Landon’s head on more than one occasion. She was concerned. We also received expressed concern from our older son, Aidan’s, therapists. We felt very confident in what we were told by the neurosurgeon at Duke, and would explain to everyone that it would correct itself over time. We did not see what they all saw though, it was getting worse. Since we see him every day, it is hard for us to notice the change. We are also so used to it now, that we don’t look at him and see that he head shape is not normal.
Before we knew it the boys were 6 months old. It was time once again to visit the pediatrician. This time, my list included the growing concern about Landon’s head. When our doctor walked in, I did not even have time to get to my list. His first words to me were “We need to get a second opinion on his head”. He ordered a CT scan the next morning. Landon did great during the scan. He did not need to be sedated, and laid perfectly still during the seconds long process. I left with 2 copied of cd’s containing his images, and with the knowledge that the Radiology Report would be faxed to both our pediatrician and the Dr at Duke. About an hour about we left the CT scan, I received a call from our pediatrician. He had already gotten the results and already called Duke. He explained that the Radiology Report confirmed that Landon had Craniosynostosis. His left Lambdoid was fused. He needed surgery.
Lambdoid Synostosis is the rarest form of Craniosynostosis and occurs in every 1 in 100,000 births.
This brings us to present day. We currently have a follow up appointment scheduled at Duke and a 2nd opinion scheduled at the Mayo Clinic in Rochester, MN.
Subscribe to:
Posts (Atom)