Jeanne and John are members of the Education Awareness Council representing Takayasu arteritis. Their daughter, Jessica, was only 14 months old when she began to have troubling symptoms that would later prove to be Takayasu arteritis.
Jessica developed unexplainable high fevers, ear infections, and respiratory problems including asthma. She had tubes put in her ears on her second birthday. Jeanne and John were at the pediatrician two to four times a week.
During one of those pediatrician visits, when Jessica was three years old, her blood pressure was 140/90. The doctor immediately took her off the asthma meds thinking they might be the cause. They waited several months for her system to clear and checked her blood pressure again and it was still 140/90. Jeanne and John were directed to Dr. John T. Herrin, MBBS, FRACP, a Nephrologist at Children’s Hospital in Boston. After extensive blood tests, Dr. Herrin put her on high blood pressure meds and sent them to see Dr. Robert Sundel, Director, Rheumatology Program at the same hospital.
Jessica continued to have ear and sinus infections, high fevers and severe asthma. The doctors tested her for every imaginable disease, which turned out to be quite a long process. She was hospitalized several times but nothing was ever found. Finally, at the age of four Jessica had her first angiogram. It was then that they found the narrowing and inflammation in her arteries, specifically her abdominal aorta, renal arteries, celiac and inferior mesenteric arteries. The nonspecific term used for these findings is mid-aortic syndrome.
Jessica was put on steroids to try and stop the active inflammation. Unfortunately they did not work and a balloon angioplasty was performed when she was six years old. It was then that Jeanne and John were told that Jessica definitely had Takayasu arteritis. The angioplasty helped but Jessica was still sick all the time. Her platelets were very high and that was her “marker” for disease activity. Next, the doctors tried Cellcept and methotrexate but to no avail. Finally, they tried IV cyclophosphamide. However, after nine months of IV treatment, the cyclophosphamide became toxic to her system and the treatment was stopped. Through all this Jessica’s spirits remained high.
Jessica soon had another angiogram to check the condition of her arteries, which had unfortunately narrowed. Another balloon angioplasty was done. The doctors also found an abdominal aneurysm as well as small aneurisms in her kidneys, which is another form of vasculitis called polyarteritis nodosa. Jeanne and John considered this the “icing on the cake.”
Jessica’s abdominal aneurysm is now monitored once a year by an MRA or magnetic resonance angiography used for the study of blood vessels. It has not changed. Finally, it seems that the right cocktail of drugs for Jessica include IV Remicade, low dose steroids and Leflunomide along with her high blood pressure meds. For the first time in ten years all her blood work comes back NORMAL. They are trying to decrease the Remicade infusions to every five weeks. Jessica is doing great right now and is very active with sports, school and friends.
If you are a parent with a newly diagnosed child, say Jeanne and John, the more you know about vasculitis (not just TAK) the better of you will be. Knowledge is power. There is so much information out there about vasculitis and all the research that goes on it can be extremely overwhelming. Most of all there are no stupid questions. Ask your doctor everything that is on your mind. If he/she can’t answer a question, be persistent, this is your child and you need to know the answer. Parents may have to go to another doctor more familiar with vasculitis to get answers. They will learn as well. Ask, ask and ask! Know your child’s medications and the side affects that go along with them. It is also important to let teachers and other caregivers know what your child has and what medications he/she is taking and anything else they should be aware of. It can be a long process before a diagnosis is even made. There are many other things that have to be ruled out before they even get to vasculitis because most of the time the symptoms can mask other diseases or they can be so vague that those aches and pains or fevers are left alone and you are told it is just a virus. It can be very frustrating. It is very important to have a good relationship with your doctor. Jeanne and John can phone or email Jessica’s doctor and he always responds promptly. He lets them know when he is away on vacation and gives them the name of the doctor they should ask for in his absence. He is always there for them as well as for Jessica. Jeanne and John say that he is a great doctor and that he also does a lot of research on vasculitis.
When Jessica was asked for words about her disease she had the following words to share: “I don’t like having a “disease”, sometimes kids think it is contagious, especially when I was younger and I had to take prednisone, which I call the fat pill, because I gained a great big 60 lbs. Kids at age 9 or 10 just made fun of me, called me names and were just really mean. My parents helped me through this stage. It was really hard. I just ignored most of them, but some of them just kept saying things, so I stood up for myself and said some things back. I don’t even tell everyone I know about my Takayasu arteritis because most adults don’t even know what it is never mind kids. When I do tell people about TAK it is difficult for me to explain it and just as difficult for people to understand it. I have lived with TAK for most of my life, so I guess I am used to it. I take my pills every day and I go in to the hospital for my treatments and I go to the doctor all the time. I don’t like the idea of having to take pills for the rest of my life for my high blood pressure or whatever else I might need along the way. I do feel good right now. I am very active. I play a lot of sports, I think that helps me mentally and physically to be a stronger person. If I have to go in for a Remicade treatment and I have a softball game right after, it makes me that much more determined to want to play and pitch some of my best games. I love softball and it takes my mind off of the treatment I just had.”
Since their daughter’s diagnosis, Jeanne and John have become passionate and effective fundraisers for Takayasu research. They have organized the annual “Jessie’s Open Golf Tournament” and also have designed and sold jewelry to benefit the children’s rheumatology department at Childrens Hospital in Boston. As members of the VF Education and Awareness Council they will continue their advocacy work on behalf of all Takayasu patients.
Published: February 2007
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