James was born with a birth defect. He was born with a Lymphatic Malformation; a condition that affects 1 in 4000 live births. Lymphatic malformations are rare non-malignant masses consisting of fluid-filled channels or spaces thought to be caused by the abnormal development of the lymphatic system. Often described as a sponge-like collection of abnormal growths that contain clear fluid. Macrocystic malformations are large, soft, smooth clear masses under normal or bluish skin. Microcystic malformations present as small, raised lesions containing clear fluid. Superficial (visible) lesions may present as tiny clear bubbles that sometimes become dark red due to bleeding. There is no known cause for this condition and it is not genetic. We found out our child had this condition at our 28 week ultrasound.
James was a lucky one as he has had amazing treatment and outcome from that treatment. Many children born with LM live with tracheotomy, feeding tubes, and ongoing treatments.
I am part of a FB group Lymphatic Malformation Awareness Group and am reminded every day how lucky we are. James is thriving and happy. There was a time each day was filled with questions of survival, treatment plans, and fear. I am very thankful for the health of my family!
Here are some previous posts on this journey:
Blog posts on LM
QUIET LESSONS IN BREATHING DEEPLY... Lessons I'm learning along the way of parenting my 4 boys(or attempting to learn anyway)
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Showing posts with label Dr. Edmonds. Show all posts
Showing posts with label Dr. Edmonds. Show all posts
Tuesday, April 21, 2015
Thursday, September 17, 2009
Left out the MRI results
There was just too much to write in the last post and life is buss. Sorry this amazing news is late!
James was born with a lymphatic malformation previously called a cystic hygroma. He was part of a study for OK432 over the summer. James had another MRI a couple weeks ago.
We drove to Houston yesterday to see Dr. Edmonds for a follow up. We got the most amazing news...after 6 years(they found the mass during a sonogram while I was 28 weeks pregnant) of learning about Lymphatic malformations and 10 ENT's(with varying treatmant plans) James MRI shows NO sign of the mass!!! He had the OK432 injections twice this summer.
We were gearing up for a very dangerous surgery for the last 5 years...thankfully we found Dr. Bauer in Dallas who referred us to Dr. Edmonds last year. I cannot say enough about Dr. Edmonds. He is so caring and kind! We are thankful that we found him and learned surgery is not the only option and other sclerosing agents can have issues. James would have likely had paralysis and a huge scar...and now he is all better!
Dr. Edmonds says that he has not seen a recurrance in any child who has responed this well to treatment! We will go once a year for many years to come for a follow up MRI and results, but feel so good about the prognosis!
James definately has his smile back!
You can read more in previous posts on my blog.
Tuesday, March 24, 2009
James treatment
At 28 weeks pregnant while getting a routine US, a mass was discovered on our sweet baby James' neck. It measured 4cmx4cm and was thought to be a fluid filled mass. WE were uncertain of what the outcome would be at that point and saw specialists, had an MRI fo James through my belly, and had weekly US until delivery. I cried and prayed every day in hopes that he would be able to eat and breathe at birth, wishing that there was no mass! I really rarely think about how terrified I was today, but this week I've been remembering.
At birth the mass was very evident and disfiguring. James was beautiful. I remember feeling very protective and sad, but he was so perfect. I just wanted everyone else to see the perfect boy I saw. I prayed and touched him. I massaged the spot and rubbed my hands together and layed them on his neck to use "energy". Whatever worked was my motto!! I remember going to the store and a well meaning lady saying "oh, what happened to him", she probably thought something bit him or he was having an allergic reaction:( It was so hard for me to say, he was born with a mass...and watch her face as she realized this was a birth defect, not a horrible reaction. I felt bad for her, but also angry that my sweet baby didn't look perfect to her. Not angry at her, just at the world in general.
Miraculously at around 1 month the mass seemed to be shrinking. It really looked smaller to our family. I know, in retrosepct, James was just growing. As James grew the mass stayed the same size and seemed to move inward. It became less detectable(looking back at picture it is still very much there, but it looked so much smaller than when his whole right side was hugely swollen at birth) and today is hard to see unless you know he has it. I can see it clearly and feel it and continue to wish it would just go away, but I know that is unlikely. I also know through MRI's that it has not shrunk, it is just the same size that my sweet tiny boy was born with and now he is much bigger.
We've spent the last 5 years trying to find the right Dr. A Dr who would be our partner, really explain our options, and treat James kindly. Dr. Bauer was perfect for us. We found him and loved him and this is one of his specialties! We hoped he could be the Dr to help us, but he referred us to Dr. Edmonds in Houston.
We made the trip to Houston today for our 1 hour appt w/ Dr. Edmonds. (He is doing the study on lymphatic malformations and OK432 that we hoped James could qualify for instead of the very scary surgery that would likely impact his trigeminal nerve). Good news~he qualifies because his mass is macrocystic rather than microcystic for the most part and we feel good about the Dr. and his explanation of the treatment. We also feel really good we did not do surgery because it is so risky and according to Dr. Edmonds you almost always end up with some damage to the facial nerve.
Bad news~we'll be spending alot of time in Houston. The treatment will most likely take 2-3 procedures and we'll spend 1-2 nights in the hospital the first trip. If all goes well we may not have to stay overnight the second and any subsequent visits.
The procedures causes swelling and infection so James will have a fever for about a week after each procedure. He will likely have irritation(pain:() in his neck where the mass is during this time because the bacteria will cause an infection to hopefully cause the body to block and shrink the mass. We are hopefull that these will be the only side effects.
We have to treat the mass because chances of severe swelling and or infection that requires emergent care are likely without treatment. We want to take care of him before school starts so now is the best time. Treatments should start next month.
At birth the mass was very evident and disfiguring. James was beautiful. I remember feeling very protective and sad, but he was so perfect. I just wanted everyone else to see the perfect boy I saw. I prayed and touched him. I massaged the spot and rubbed my hands together and layed them on his neck to use "energy". Whatever worked was my motto!! I remember going to the store and a well meaning lady saying "oh, what happened to him", she probably thought something bit him or he was having an allergic reaction:( It was so hard for me to say, he was born with a mass...and watch her face as she realized this was a birth defect, not a horrible reaction. I felt bad for her, but also angry that my sweet baby didn't look perfect to her. Not angry at her, just at the world in general.
Miraculously at around 1 month the mass seemed to be shrinking. It really looked smaller to our family. I know, in retrosepct, James was just growing. As James grew the mass stayed the same size and seemed to move inward. It became less detectable(looking back at picture it is still very much there, but it looked so much smaller than when his whole right side was hugely swollen at birth) and today is hard to see unless you know he has it. I can see it clearly and feel it and continue to wish it would just go away, but I know that is unlikely. I also know through MRI's that it has not shrunk, it is just the same size that my sweet tiny boy was born with and now he is much bigger.
We've spent the last 5 years trying to find the right Dr. A Dr who would be our partner, really explain our options, and treat James kindly. Dr. Bauer was perfect for us. We found him and loved him and this is one of his specialties! We hoped he could be the Dr to help us, but he referred us to Dr. Edmonds in Houston.
We made the trip to Houston today for our 1 hour appt w/ Dr. Edmonds. (He is doing the study on lymphatic malformations and OK432 that we hoped James could qualify for instead of the very scary surgery that would likely impact his trigeminal nerve). Good news~he qualifies because his mass is macrocystic rather than microcystic for the most part and we feel good about the Dr. and his explanation of the treatment. We also feel really good we did not do surgery because it is so risky and according to Dr. Edmonds you almost always end up with some damage to the facial nerve.
Bad news~we'll be spending alot of time in Houston. The treatment will most likely take 2-3 procedures and we'll spend 1-2 nights in the hospital the first trip. If all goes well we may not have to stay overnight the second and any subsequent visits.
The procedures causes swelling and infection so James will have a fever for about a week after each procedure. He will likely have irritation(pain:() in his neck where the mass is during this time because the bacteria will cause an infection to hopefully cause the body to block and shrink the mass. We are hopefull that these will be the only side effects.
We have to treat the mass because chances of severe swelling and or infection that requires emergent care are likely without treatment. We want to take care of him before school starts so now is the best time. Treatments should start next month.
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