NAME: Andy Gabriel
MOTHER'S NAME: Diane
OCCUPATION: School
BORN: December 26, 1995
STATUS: Child
DIAGNOSED:
BD INVOLVEMENT:
CONTACT: dianegendron61@hotmail.com

POSTED: September 22, 2002

My son Andy-Gabriel was born on December 26, 1995. He seemed to be a fine, healthy baby. Two days later, he developed jaundice, and the condition continued for more then two months. Then, at six weeks, he came down with a very high fever. I took him to the ER and they did some tests. They found out that his kidneys were dilated, and he had a kidney infection, He was admitted to the hospital and I stayed with him, since I was breastfeeding and wanted to keep it up. They gave him three or four different antibiotics and after two weeks he was discharged and put on Septra for eight months.
After many urine tests and many months on antibiotics, the urologist (who was sure everything was now fine) told me to stop the medication. About two weeks later, Andy-Gabriel developed a very high fever. I rushed him to the ER. They couldn?t find the cause and told me that his urine looked okay. Then they sent the baby home, saying that he might have a virus.
But he didn?t get any better during the next three months. He would have a fever for about five days out of 7. And he stopped moving around; he would just lay still. During this period, he also developed mouth ulcers.
Then, when he was a year old, I got mad and insisted that he be given further tests. After all, he had had a fever for months! The doctor in charge that night told me he might have a virus. It was the same story again. I said to that doctor, "Find that virus!" And she answered, "No problem, we are going to do some blood tests." When she came back to me with the results, she said, "I?m sorry?I don?t understand?he doesn?t have virus or bacteria in his blood. But he is anemic." She then told me that they would have to do some more tests and go to see some specialists.
That started the run-around to many departments in the hospital. They tested him for leukemia, for some kinds of diseases that exist only in South and Central America (his dad is from El Salvador), and for some disease that are found only in Europe, etc. They also had me take him to a rheumatologist, who said that my son might have Juvenile Arthritis. All of his blood tests were abnormal. An elevated SED rate, his red blood cells were too low.
Then, when he was a year and a half old, Andy got worse. In his mouth he had so many ulcers?about 30 ulcers?that he wasn?t able to eat or drink. I was still breast-feeding him (thank God for that). They put him in the hospital and gave him some more tests. He was checked by an eye doctor, had a bone scan and a scan of his muscles as well (I can?t remember the name of that test). The tests showed that he had inflammation of his left hip and right knee. Because he had been doing okay while on Septra, the rheumatologist decided to put him back on that medication, and give him Naprosyn as well.
He continued for another year without getting a definitive diagnosis. When he was two and a half, Andy had a tonsil infection. His tonsil became so big that they had to schedule surgery on it. At the same time, he also had two hernias. Since we have "hyperthermia maligna" in my family, the doctors decided to do surgery for those do, and take care of all those problems at the same time. They did his tonsils and adenoids as well as the two hernias. The rheumatologist advised me to tell the surgeon to give him antibiotics right after the surgery, because we already knew that Andy-Gabriel was over reactive to certain things?though no one knew. I did that?I told the surgeon about the rheumatologist?s recommendation to give antibiotics. But he didn?t pay attention to me. In fact, he didn?t even have Andy-Gabriel?s files, with information the rheumatologist had written wrote inside. The surgeon told me that the types of surgery Andy-Gabriel has having didn?t need medication afterwards. All he would only look for was a hyperthermia reaction. The anesthetist left a note to be called if fever developed.
They did the surgery. And the next morning, the surgeon said I could take my son home from the hospital. His IV was already out because he was supposed to be discharged. Because my husband was at work, I asked the doctor if I could stay a while longer, until lunchtime. Thank goodness I did that, and the doctor said it would be okay. Because only an hour later, I looked at Andy?s face he didn?t look at all well to me. I asked the nurse to take his temperature. She touched him on his forehead and she said that he didn?t feel warm. But I insisted, and asked again, "Can you please take his temperature?" She did it, and the thermometer showed that Andy had a temperature of 105 degrees! (Over 40 degrees Celsius,) She immediately called the surgeon, who said they would keep Andy in the hospital.
That night, he started vomiting. His fever was still high and wouldn?t come down. The following morning, I took out his pacifier from his mouth and his lips were blue! I was very worried, especially because Andy is also asthmatic. I called for the nurse and he came with a saturation machine. That wasn?t the problem. Then they did a urine test, and said he was dehydrated. So they put an IV back in, with three different bags of liquid. I was with him in the hospital for a week in post surgical unit; then they decided to transfer him to another floor. I ask them to send him home and they did. Andy?s fever continued for more then three weeks that time.
Some time after that, they gave him a test for his kidneys that involved putting a very tiny tube in his urethra. About a week afterwards, he had a banalities (inflammation of the penis). It was so big that they sent him to see a surgeon. When the swelling went down, we were able to see that Andy had many little ulcers on the top part of his penis. He had those for over a year.
They gave Andy a lot of medications. They tried Colchicine, and it didn?t do anything at all. We gave him Prednisone, which helped?but whenever we stopped the Prednisone, the ulcers came back. So we decided to try Thalidomide. It took some time to get the government to approve its usage. That was the first hurdle; the second was that I couldn?t find a way to pay for it. It cost about $300 a month, which is astronomical for anyone but especially for someone like me who is on welfare. With the help of friends (who have sick kids also) and Andy?s pediatrician, we got assistance from a foundation?not only for Andy but also for all the specials kids who need special treatment. This gave Andy a wonderful break from illness. He was nearly free of symptoms for a year! That was a relief for me, too. But we had to stop the Thalidomide after the year, because he developed some peripheral neuropathy. (The neurologist later came to believe that the neuropathy probably wasn?t all caused by Thalidomide, because Andy?s nerves continued to worsen after we stopped the medication.)
Last year, Andy-Gabriel had another big flare, as well as severe problems with breathing, including an asthma attack. I rushed him to the Emergency Room. His saturation was low, and they treated his asthma. Then they sent him home, instructing me to check his breathing and bring him back in if he didn?t feel better?in which case they would admit him. He went to sleep in his bed, and I kept going up and down to check on him. He was okay at first?and then I found his skin had turned blue! And he wasn?t breathing at all! It was so-o-o scary.
My brother was at home with me, and he told me to be calm; that my son was breathing again and he would check on Andy. But then, Andy?s right arm went up and he started shaking. That was it?I went back to the ER and told the nurse I had found him blue and not breathing. She checked his saturation and it was all right. But then, in front of her, he did that same thing with his arm. That might be a seizure, they nurse said. Andy has four more of those episodes that night. Some involved only his arm while some shook half of his body. Naturally, they admitted him to the hospital. The next morning, a neurologist did an EEG and found some abnormality. She said that there were two options: she could put him on medication, or wait to see if he had any more before starting a drug. I choose the second one. Perhaps two weeks later, he had seizures again. So we started Tegretol taken care of the seizures pretty well, so they?re under better control now.
If that sounds like more than enough for one small child, I?m sorry to say that Andy has had to go through a lot more illness. His GI system became involved. He can have diarrhea for 3-4 days, with a lot of mucus. Sometimes he will go as much as 15 times a day! That meant we had to see a gastroenterologist. He told me it will be a good idea to do a colonoscopy at a time when Andy was flaring, so we could see if it was or was not Behcet?s Disease that was affecting him.
At that time, I was taking Andy to a French hospital, and his rheumatologist there didn?t believe he had the symptoms that indicate Behcet?s. Ever time Andy?s condition flared, I tried to reach the doctor but was unsuccessful. By the time I was able to reach him, I had already tried to increase his medicine and he was doing better.
The next time he experienced a flare, I decide I just had to change hospitals. I took him to the English hospital, where he was seen by a rheumatologist, gastroenterologist, neurologist, eye doctor and urologist. The team of doctors decided that when Andy?s next flare occurred they would bring him in and do a colonoscopy to be sure he didn?t have Crohn's Disease as well as Behcet?s.
Sure enough, Andy had another flare, and I brought him in for a colonoscopy and endoscopy. The procedures revealed that he had many, many ulcers in his stomach, and gastritis, and many signs of Behcet?s involvement. The good news was that there was no sign of Crohn's Disease. The gastroenterologist prescribed Losec and the rheumatologist put him on 12.5 mg of Prednisone to stop the flare. He did okay with these, but it was a problem to wean him off. We went very slowly and introduced Colchicine in a good period (double what he was taking before). It was working!
Then, after Christmas, Andy complained to me about back pain he was having. Since an appointment with the rheumatologist was already on my calendar, I mentioned the pain to the doctor on our visit, and he took X-rays. They showed that Andy-Gabriel had two broken vertebrae, probably caused by overly long use of Prednisone. In addition, Andy had an EMG to check his nerves. The findings were that his motor ability was okay but his senses were getting worse. As of now, we are waiting to get an MRI of his spine. He is going to see an orthopedist as well, plus a neurosurgeon in case he needs surgery.
The urologist started him on another medicine to treat his enuresia (sometimes, he wets his underwear in the daytime). It is called Ditropan XL. I think it?s working because now he doesn?t have an uncontrollable urge to go.
Andy is usually very tired. He may sleep from 1 to 5 in the afternoon - this was due to his epilepsy. He was having seizures while asleep, which I didn?t know.
Although it sounds like Andy-Gabriel has no time to do anything but see doctors, take medication, and deal with his illness, there are times when he can pursue the pleasures that many other children enjoy. He loves swimming and takes lessons once a week. During this past summer, he has been going out three times a week. Swimming is a great exercise for him because it doesn?t hurt his arms and legs, while it strengthens so many other parts of his body, including his arms, legs and lungs. He can walk to some extent, but uses a wheel chair for long distance because he can?t walk too long. His legs hurt, and he gets tired very fast because of the neuropathy. And then there?s his collection of stuffed toys (TY buddies and babies). Every time he has a "hard" test schedule, I buy him one. Not surprising, he?s got a growing collection! We have gone to the hospital about once a week for six years now.
Andy-Gabriel?s rheumatologist believes he is the only person that young with Behcet?s disease. There?s someone else, but she?s older?a teenager. The doctors I am seeing now are learning about Behcet?s Disease at the same time as me. There just hasn?t been that much information available and most physicians have little knowledge of the disease, its symptoms, its progression and its treatment. At this point, after scores of doctors and nurses have examined Andy, I can fortunately say that he is now being followed by a fantastic team. I can always ask the nurse any questions?and they always have the time to respond. While they may not have all the answers, their support, concern and encouragement make an enormous difference.
If anyone has a question, they can e-mail me at dianegendron61@hotmail.com

Love,
Diane