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CARSON’S STORY
By Lisa Sollenberger, mother
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Adam, Lisa, and Carson Sollenberger
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My name is Lisa Sollenberger and I’d like to share the story about my son, Carson. After a full-term pregnancy – and a normal delivery – I gave birth to my first child, Carson, on February 15, 2003. Due to swelling and discoloration in his penis, the doctors decided against circumcision until he could be seen by a pediatric urologist. Approx. 1 week later, I noticed that Carson’s right leg had become quite a bit larger than his left leg. My husband, Adam, and I became very concerned so I immediately scheduled an appointment with the pediatrician. In the beginning, the pediatrician felt it was probably nothing to worry about. However, Carson’s right leg continued to grow in much bigger proportion than his left leg. Another month or so went by, and the pediatrician finally ordered further testing.
Over the next 8 months, Carson would be referred to a number of specialists in the metro Atlanta area, including: a vascular surgeon, orthopedic surgeon, urologist, and general pediatric surgeon. Unfortunately, each specialist gave a different diagnosis for the enlarged leg. We heard possible Klippel-Trenaunay Syndrome, hemangioma, hemihypertrophy, vascular malformation, and lymphangiomatosis. This was a very frustrating and stressful time! During this same time frame, Carson had a Renal Sonogram (at 3 months) and an MRI (at 7 months). The results of both the Renal Sonogram and the MRI were “Normal.” However, as a lymphedema therapist would later point out to me: the technicians probably did not focus on his lymphatic system.
During one of Carson’s routine checkups with his pediatrician during this time frame, I was told that the Children’s Hospital of Boston might be able to help me because they have a Vascular Anomalies Center (VAC) which consists of experts in the vascular, lymphatic, arterial, and venous fields. Since Adam and I didn’t seem to be making any progress with the local specialists who had seen Carson, I eventually turned to the Children’s Hospital of Boston for help. Through the Internet, I obtained the email address for a physician associated with their VAC, and I sent an email to him, providing him with a brief background on Carson’s case. Within one week, I received a reply from their Clinical Coordinator who confirmed that their facility had the appropriate resources and qualified personnel to review Carson’s case. She explained that weekly conferences are held at their VAC during which their team of experts can review, collaborate, and diagnose unique cases such as Carson’s – at no cost to the patient except for labwork if necessary.
Steps were taken immediately to send all of Carson’s medical records (including the images from the Renal Sonogram and MRI) to the Children’s Hospital of Boston to be reviewed by their VAC. On March 3, 2004, when Carson was almost 13 months old, his case was reviewed and diagnosed as Congenital Lymphedema. We were told that his lymphedema is caused by malformed lymph channels in his right leg, pelvis, and genital area. FINALLY, Carson’s condition had been diagnosed! Although he was only one week old when I began my efforts to get a diagnosis for his swollen leg, it took a FULL YEAR – and the Children’s Hospital of Boston – before he was diagnosed with Congenital Lymphedema. Although lymphedema can be hereditary, neither Adam nor I know of anyone on either side of our family who was born with lymphedema or who developed it later in life without a known cause such as surgery or injury.
Once we learned the proper diagnosis of Carson’s case, we then set out to learn as much as we could about lymphedema. We soon learned of The Lighthouse Lymphedema Network (LLN) which helped to put us in touch with local Certified Lymphedema Therapists so that Carson could begin to get the treatment he needed.
In May 2004, when Carson was 15 months old, he received his first evaluation by a Certified Lymphedema Therapist. At that time, each leg was measured. Because of the delay in his diagnosis, his right leg had become so swollen that it was 64% larger than his left leg. This placed him in the “Severe” category.
For the next 4 months, Carson received aquatic therapy twice a week using the special hands-on technique called Manual Lymph Drainage (MLD). Immediately after each therapy session, his right leg would have to be wrapped from his toes to his hip, then continuing across his abdomen and around his waist. From time to time, his genital area had to be wrapped also. What a challenge that was! However, the MLD therapy was very beneficial. After the first 4 weeks, the swelling in his right leg had decreased by 31% and the swelling in his scrotum decreased by 18%. When his therapy sessions ended, he was measured for a Reid Sleeve, to be worn at night. Since that time, I have continued giving Carson daily MLD therapy. The therapist suggested that -- when Carson was almost 2 years old – and his growth spurts had slowed down somewhat – he should be evaluated again and measured for his first custom-made compression garment.
Carson was seen a couple more times by a pediatric urologist regarding circumcision. However, the urologist discouraged the idea because of possible complications in the healing process.
In December 2004, when Carson was 22 months old, he was finally seen by a genetics specialist at Emory in Atlanta. Prior to the appointment, Adam and I were led to believe that they would take blood samples from Carson, as well as the two of us, for genetic testing. However, all that occurred at the appointment was the geneticist looked closely at Carson’s leg and genital area and said “I believe this is an isolated case.” He then gave us the contact info for the Genetic Counselor with the Lymphedema Family Study at the University of Pittsburgh, and suggested that we contact her to see if Carson might qualify for enrollment. Although the Lymphedema Family Study is primarily interested in lymphedema patients who have [at least] two other family members with lymphedema, it also maintains a database of “singlet” cases of lymphedema patients like Carson [who have no known family history of lymphedema]. We pursued that route and, a few months later, Carson was enrolled in the Study as a “singlet case”. We received their kit; Adam, Carson and I submitted our blood samples, and the DNA extraction was performed by their lab. One day, when their lab has accumulated 100 or so “singlet” cases – which we realize could be years from now -- Carson’s DNA will be analyzed for the purpose of identifying specific gene mutations responsible for the lymphedema. Of course, we realize that it might be YEARS before his DNA is analyzed – and we will just have to wait it out. We hope that, in the near future, there will be a lot of progress in lymphatic research as well as gene therapy.
Just before Carson’s 2nd birthday, he was measured for his first compression garment. Because his pelvis and genital area is affected, he was prescribed the compression garment known as a “1½ leg leotard”. Because of his frequent growth spurts, his leg and trunk area continue to be measured at 3 or 4 month intervals and a new compression garment is ordered. He still wears a Reid Sleeve at night, and it has to be replaced approx. every 6 months. These custom-made garments are very expensive.
Last summer, when Carson was 2½ years old, he began complaining of back pain. We wondered if the back pain might be triggered by the lymphedema. He was seen by his therapist, along with a pediatric orthopedist knowledgeable in lymphedema. They determined that Carson’s back pain was being caused by two things: (1) because of Carson’s right leg being larger, heavier, and more awkward to use when performing specific activities (such as going up and down stairs, straddling toys, etc.), he is using his left leg to “compensate” for the right leg, and this causes him to overwork his lower back, causing back pain, and (2) the frequent growth spurts are causing an ongoing impact on his lymphatic system. Carson was scheduled for 6 more sessions of MLD therapy to help move the fluid, reduce the pressure, and somewhat relieve his back pain.
At this time, Carson is too young to administer daily MLD techniques or other self-care procedures on himself. He is too young to understand WHY he must wear a special compression garment from his toes to his waist every day. He is too young to know that he will always have that extra “layer” of clothing every day for the rest of his life. As he grows, he must cope with his condition and the impact it will have on his lifestyle. He must deal with the precautions and risks, and he must learn how to perform the daily self-care procedures. He must face these issues on a daily basis for the rest of his life. Of course, I remain concerned about his self-esteem and the psychological, physical, emotional, and financial impact facing him in the years ahead.
It is our understanding that, when Carson is older, he will be discouraged from any type of contact sports because of possible injury or trauma to his leg. For now, we try to keep his life as normal as possible. He views his condition as simply "little leg, big leg". Fortunately, he is usually eager to follow my movements as I give him daily MLD therapy. He is also very receptive to wearing his compression garment during the day and his Reid Sleeve at night. Occasionally, he may ask for a little help with his garment when he goes to the bathroom. As he grows older and becomes more sensitive to negative comments or actions by his peers, the daytime garment could become an issue. We will deal with that if and when that time comes. He is such a blessing, and we enjoy every single minute with him. He is a very happy, loving, and outgoing little boy and he enjoys doing all the typical things that little boys do.
Carson had his 3rd birthday last month and, while it hasn’t always been easy for all of us to deal with the wrapping, compression garments, numerous trips for evaluations, garment fittings, and tiring therapy sessions, he has been such a little trooper through all of it. At bed time, as he gathers up the books that he wants me to read to him, he will frequently grab his Reid Sleeve as well, saying “my Reid Sleeve” and then lie down so I can place it around his leg.
If you would like to ask me any questions or share any comments, you can email me at chipcutie@alltel.net.
Lisa Sollenberger
March 17, 2006
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