Hello All!
We went to see an orthopedic surgeon today at Texas Children's per our Neurologist request. I think this was a precautionary doctors visit, to make sure she checks out every possibility. Dr Phillips had looked over all of our previous MRI's and X-rays and his conclusion is that what ever Cooper has going on it is not an orthopedic problem.
He believes that if Cooper's problem remained only in his foot or leg, it might have been an orthopedic problem. However, since there are several other symptoms he believes there is something else going on.
As we were leaving Texas Children's today we received a call from the Neurosurgeons office, and they are free to see us on Thursday!!! We were originally told that the doctor would not be available until January, but our wonderful neurologist has been diligent in helping us to find a solution!!!
One possibility that has been suggested to us is Langerhans Cell Histocitosis. The long and short of it is the body is producing too many of a type of call know as a Langerhans Cell and these cell then attach themselves to the areas on the spine and neck which will create inflammation. This may explain whatever it is they see on his spine.....
We had a wonderful Thanksgiving here at the Cannon household. Aunt Shannon came in and spoiled her nephews rotten!!
We hope everyone had a great Thanksgiving and are enjoying the Holiday season. Don't forget that Jesus is Reason for the Season!!!
XOXO,
Kirby, Summer, Cooper, and Clyde
Monday, November 29, 2010
Wednesday, November 24, 2010
How it all began 12/25/2009
Hello All,
I have decided to use this blog to document and keep anyone interested upated in all that has been happening with Cooper. I will use this first blog to start from the beginning, so this will be a very long post.
On Christmas day last year we had all eaten Christmas dinner and I had put Cooper and Clyde down for a nap. Cooper was leaving with his Dad that afternoon and Uncle Clint and Paw-Paw to go to the new ranch in Colorado. So I wanted him to get some rest in. When he woke up from his nap he had a slight limp. Nothing major, but enough of one to notice. I called Kirby in and when looked at his knees and ankles for swelling and pushed and twisted on his legs. He showed no signs of pain or discomfort from us doing this. I assumed he had twisted his ankle while playing and it was maybe a little tender to pressure, but that was all. While he went with Kirby to Colorado he developed a small cold. Kirby treated him with cold medicine and advil and Cooper was fine by the time he returned. However he still had the limp.
He continued to have this limp for two weeks and I was noticing it becoming more and more noticeable. So I took him to see his pediatrician. The doctor did not think it was anything serious but wanted us to get an xray and ordered some bloodwork. That afternoon he called me and said the xrays looked normal, but his white blood count was very high and wanted us to go immediatly to Texas Childrens Emergency room and have ourselves admitted. While there they did some more xrays and an MRI of his leg. Upon no discovery they released us. I of course asked them about the bloodwork, and they asked if I wanted them to check it again?!?! So I said yes, and they released us before gaining any results.
So we saw an orthopedic after this who took some more xrays and discovered nothing. We were being told that kids obtain small fractures all fo the time that can not be seen on xrays and that we just need to give it time and he will heal himself. Fortunatly our pediatrician was not satisfied with that answer either. So them we saw a neuologist who scheduled a MRI of Cooper's spine and brain. We made an appointment for a week later and he said that Cooper MAY have a tethered spinal cord and recommended us to a neurosurgeon.
Side Note: Cooper's limp is getting more and more prgressive, he can no longer walk on stairs without assistance and can not run at all. He walks with his left foot curled under and his right foot turned outward with his toes flaired up.
We walk into the neurosurgeons office and he watches Cooper walk a few feet and says that it is not a tethered spinal cord but something else. Once he finds out that his SED rate has been more than triple the normal rate he immediatly schedules another MRI. He believes that Cooper has an epidural abcess which is an infection is his spine.
We complete The MRI that night and the neurosurgeon somes in and says he sees the abcess and immediately admits us into ICU at Memorial Hermann stating that Cooper spine has suffered a stroke and that he might have another one at any moment and be paralyzed. We end up spending 24 hours in ICU and the dotors them tells us that the radiologist feel that there is nothing in his spine more strongly then he feels there is. So they send us to the regular hospital rooms at Memorial Hermann.
We spent a total of 6 days at memorial Hermann and after countless testing an orthopedic THINKS he sees where Cooper had and avulsion fracture in his knee. With that neurology signs off on him and orthopedics proceeds to cast little Cooper from foot to hip and sends us home.
The cast is removed 2 weeks later and we are old he should return to normal shortly. Of course he does not, and we go to see the original orthopedic who says that he has never seen an avulsion fracture in any of he xrays. And he sticks to his orignial diagnosis that nothing is wrong and Cooper will correct his walking on his own.
We continue with follow ups with our pediatrician and Coopers walking gets worse. Then one morning he wakes up and can't crawl out of bed. "I stuck. I stuck, Mom" he proceeds to tell me. So i carry him to the living room and sit him in his chair then immediatly call his pediatrician. The doctor consults the original neurologist and they then consult with the rheumatology department Texas Chilldrens. The rheumatology department believes that Cooper mioght have arthritis and schedules and appointment. Meanwhile, that day our doctor prescribes Naproxen for Cooper. I start him on it that day. Within two days we see an improvement. He is walking better and has a better appetite.
Side Note: During this time, Cooper has been eating next to nothing, not gaining a pound and and lethatgic. Hi limp has transformed from the outward flared toes to the an inward club foot while his left foot has straighted out.
Rheumatology then sees Cooper and they see inflammation in his knees, and hands. We are eccstatic because we feel we have a solution. Not so much. After a few monthes of treating Cooper they notice the arthritis is under control and he should be regaining mobility and function. Which he is not. The rheumatolgy doctors start to belive there is something else going on. They refer us to genetics as wel as rhuematology. Genetics reveals nothing.
On November 10th we see Neurology. After a 2 hour and several doctor examination, and once they realize this has been going on for 11 months, the neurology doctor believes there is something very serious going on but they have never seen anything like it before. They notice that Cooper has a weakness in his legs, but it is obvious it is not in his muscles.
The ask us to schedule appointments with their auditory department to check his ears, their neurosugery department, their optomolgy department, speech and language, and physical therapy.
I received a call last Friday from the neurology doctor asking us to have another spine and brain MRI on Sunday. She called me Monday witht he results.
They can clearly see there is something on Coopers F1 vertebrae. This is the the part of the spine at his butt crack. However they are having a hard time determining exactly what it is. She is consulting with neurosugery and they will soon be ordering a cat scan to try and see if they can get a more clear picture of what is on this spine. If the cat scan does not work they will then go in and do a biopsy. In the mean time we are scheduled to see another orthopedic at Texas Childrens on Monday November 29th.
So this is where we are today. We Thank everyone for all of the wonderful owrds of encouragement and prayers. I will try to keep this blog up to date. We love you all and hope you have a wonderful Thanksgiving!!!
XOXO,
Kirby, Summer, Cooper, and Clyde
I have decided to use this blog to document and keep anyone interested upated in all that has been happening with Cooper. I will use this first blog to start from the beginning, so this will be a very long post.
On Christmas day last year we had all eaten Christmas dinner and I had put Cooper and Clyde down for a nap. Cooper was leaving with his Dad that afternoon and Uncle Clint and Paw-Paw to go to the new ranch in Colorado. So I wanted him to get some rest in. When he woke up from his nap he had a slight limp. Nothing major, but enough of one to notice. I called Kirby in and when looked at his knees and ankles for swelling and pushed and twisted on his legs. He showed no signs of pain or discomfort from us doing this. I assumed he had twisted his ankle while playing and it was maybe a little tender to pressure, but that was all. While he went with Kirby to Colorado he developed a small cold. Kirby treated him with cold medicine and advil and Cooper was fine by the time he returned. However he still had the limp.
He continued to have this limp for two weeks and I was noticing it becoming more and more noticeable. So I took him to see his pediatrician. The doctor did not think it was anything serious but wanted us to get an xray and ordered some bloodwork. That afternoon he called me and said the xrays looked normal, but his white blood count was very high and wanted us to go immediatly to Texas Childrens Emergency room and have ourselves admitted. While there they did some more xrays and an MRI of his leg. Upon no discovery they released us. I of course asked them about the bloodwork, and they asked if I wanted them to check it again?!?! So I said yes, and they released us before gaining any results.
So we saw an orthopedic after this who took some more xrays and discovered nothing. We were being told that kids obtain small fractures all fo the time that can not be seen on xrays and that we just need to give it time and he will heal himself. Fortunatly our pediatrician was not satisfied with that answer either. So them we saw a neuologist who scheduled a MRI of Cooper's spine and brain. We made an appointment for a week later and he said that Cooper MAY have a tethered spinal cord and recommended us to a neurosurgeon.
Side Note: Cooper's limp is getting more and more prgressive, he can no longer walk on stairs without assistance and can not run at all. He walks with his left foot curled under and his right foot turned outward with his toes flaired up.
We walk into the neurosurgeons office and he watches Cooper walk a few feet and says that it is not a tethered spinal cord but something else. Once he finds out that his SED rate has been more than triple the normal rate he immediatly schedules another MRI. He believes that Cooper has an epidural abcess which is an infection is his spine.
We complete The MRI that night and the neurosurgeon somes in and says he sees the abcess and immediately admits us into ICU at Memorial Hermann stating that Cooper spine has suffered a stroke and that he might have another one at any moment and be paralyzed. We end up spending 24 hours in ICU and the dotors them tells us that the radiologist feel that there is nothing in his spine more strongly then he feels there is. So they send us to the regular hospital rooms at Memorial Hermann.
We spent a total of 6 days at memorial Hermann and after countless testing an orthopedic THINKS he sees where Cooper had and avulsion fracture in his knee. With that neurology signs off on him and orthopedics proceeds to cast little Cooper from foot to hip and sends us home.
The cast is removed 2 weeks later and we are old he should return to normal shortly. Of course he does not, and we go to see the original orthopedic who says that he has never seen an avulsion fracture in any of he xrays. And he sticks to his orignial diagnosis that nothing is wrong and Cooper will correct his walking on his own.
We continue with follow ups with our pediatrician and Coopers walking gets worse. Then one morning he wakes up and can't crawl out of bed. "I stuck. I stuck, Mom" he proceeds to tell me. So i carry him to the living room and sit him in his chair then immediatly call his pediatrician. The doctor consults the original neurologist and they then consult with the rheumatology department Texas Chilldrens. The rheumatology department believes that Cooper mioght have arthritis and schedules and appointment. Meanwhile, that day our doctor prescribes Naproxen for Cooper. I start him on it that day. Within two days we see an improvement. He is walking better and has a better appetite.
Side Note: During this time, Cooper has been eating next to nothing, not gaining a pound and and lethatgic. Hi limp has transformed from the outward flared toes to the an inward club foot while his left foot has straighted out.
Rheumatology then sees Cooper and they see inflammation in his knees, and hands. We are eccstatic because we feel we have a solution. Not so much. After a few monthes of treating Cooper they notice the arthritis is under control and he should be regaining mobility and function. Which he is not. The rheumatolgy doctors start to belive there is something else going on. They refer us to genetics as wel as rhuematology. Genetics reveals nothing.
On November 10th we see Neurology. After a 2 hour and several doctor examination, and once they realize this has been going on for 11 months, the neurology doctor believes there is something very serious going on but they have never seen anything like it before. They notice that Cooper has a weakness in his legs, but it is obvious it is not in his muscles.
The ask us to schedule appointments with their auditory department to check his ears, their neurosugery department, their optomolgy department, speech and language, and physical therapy.
I received a call last Friday from the neurology doctor asking us to have another spine and brain MRI on Sunday. She called me Monday witht he results.
They can clearly see there is something on Coopers F1 vertebrae. This is the the part of the spine at his butt crack. However they are having a hard time determining exactly what it is. She is consulting with neurosugery and they will soon be ordering a cat scan to try and see if they can get a more clear picture of what is on this spine. If the cat scan does not work they will then go in and do a biopsy. In the mean time we are scheduled to see another orthopedic at Texas Childrens on Monday November 29th.
So this is where we are today. We Thank everyone for all of the wonderful owrds of encouragement and prayers. I will try to keep this blog up to date. We love you all and hope you have a wonderful Thanksgiving!!!
XOXO,
Kirby, Summer, Cooper, and Clyde
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