What is Behcets Disease
Behçet's disease (also known as Adamantiades-Behçet's disease), is a chronic condition due to disturbances in the bodys immune system. This system, which normally protects the bod...
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My *rd old daughter diagnosed with BD
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HI. I came to this website in search of support, help, guidance anything I can get. My daughter was diagnosed with Behcets this year. It came after many doctors offiice visits starting about 4 yrs ago. The docs always just said its her genetic makeup to be a sickly child. I went with that. 2 years ago she got really ill-fever of about 106 that is with tylenol and motrin in her. Of course took her to the doctor they prescribed an antibiotic like always since she tested negative for flu, strep, mono - this was the case everytime. Finally, I took her to the childrens hospital because she had sores in her mouth and a few on her privates. They had a infectious disease doctor look her over and tested her to see for herpes - herpes test came back negative. Sent us home with the diagnoses ADNO virus and the sores were a secondary infection from the ADNO. OK I went home thinking doctors know what they are talking about. That whole year she always had atleast 3-5 mouth sores in her mouth. Constant rinsing with different things. When she would start to get more than 5 sores we would know she was getting ill. She got ill many times that year and always had the sores and always ran a temp atleast 104. February 2009 she fell very ill again. Sores in the mouth, a few sores in her privates, HIGH fever running around 105 and getting as high as 108. Took her to the doctor they said keep giving her tylenol and motrin and here is some antibiotics. I got to the parking lot and said THIS IS NOT NORMAL so I took her to the childrens hospital they blew us off. The next day I called the infectious disease doctor that had seen her the year before she saw us right away and realized this WASNT normal. So she did bloodwork, called a gastro doctor-they wanted to see us right away - by this time she had sores on her privates and in her crack of her litte butt (sorry to term it that way). They wanted to do a endoscopy and colonoscopy on her to check for chrons or any other damage. By this time she had sores in her ears too. Once they popped they would drain - very gross drainage. But they didnt see any signs of chrons just major damage from ibuprofen, so she is no longer allowed to take that. But after seeing many doctors the rheumatologist has came to Behcets disease. He is treating her with prednisone and colchicine. I am very confused with this disease. I read about prednisone and all the things it can do to your body and I just dont want this to happen to her. I need help anything you can offer. She started school a month ago and has been out 8 days so far - sick-fever and mouth sores. This is really rough on me. I thank you much
Posted on 09/17/09, 07:09 pm |
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First, welcome and I am so sorry for your ordeal. I have a 12 year old with a genetic immune disorder, so I know how hard it can be.
As far as Behcet's, her coming about her diagnosis sounds textbook. They always want to label it "something" even when they do not know. There are laws each state has for chronically ill children protecting them, and giving them special rights due to their being out of school so much. Talk to the district special education director. You do not mention her age, so I really cannot comment on her treatment other than that for adults, that is considered "Old-School" treatment. TNF Inhibitors are considered the newest and most promising, but she may be too young or the treatment too risky, or both. I always recommend a second opinion, that was the first thing I did. Help her to normalize life as much as she can, and don't make the diagnosis scary. As far as Prednisone, I won't take it myself, and yes it can have serious side effects. You never want to stop steroids abruptly. However for my daughter, and her illness, she has been on Prednisone a lot in her 12 years, and it has helped tremendously, but I prefer to time-limit it. Make sure you do a lot of research, Behcet's is rare, but in a child even more rare. Reach out for support, and hang in there! You have to be strong to be a good mom and advocate for her. ((Heather)) 
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Hello and thank you so much for replying on my post. Im so sorry to hear about your daughter with a immune disorder. I always ask myself how does this happen. I read the reason's why its happens, but I still dont understand it at all.
My daughter turned 8 in July of this year. She has missed so much school and since the new school year started I see the pattern starting all over again. They say with her weakened immune system she will most likely catch everything. For normal immune systems they can get the germ and their body fight it off and never have a sympton with the immune disorders they cant fight it off. It is very frustrating. I try to stay very positive, but the more I read the more I fall into that Oh my gosh. I cant sleep from worrying about the what if's. I go thru this everytime she gets sick. I have read some really scary stuff about prednisone and I just want her off of it. She was suppose to come off of it last Friday when we went to her rheumatologist in Nashville TN - Vanderbilt Hospital, but since she had been sick the week before he decided to keep her on it until December. It is a small dose 2 mls, but I would like to see her off of it completely. I have considered homeschooling her in hopes of getting her immune system maybe built up better. Her eating habits are awful - I am only to blame for that I know. But I wonder if she ate better fruits and vegetables if that would help in any way. Thank you so very much for your input I really needed it. Im scared and confused, aggravated and frustrated all at the same time. I read about the symptons of Behcets and yes she has some of them, but then I think is it really Behcets. I guess sometimes Im a bit naive about it. I think it will just go away. But again thank you for your support and advice. I think a second opinion is what I need to do.
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I have Behcet's disease (BD)and was diagnosed last May, although I had BD since 2006. I started showing symptoms after a flu shot.
Keep in mind that Drs. rarely if ever see a case of BD and misdiagnosis is common. The clue is when they fall back on their default diagnosis, usually a common aliment. For example my neurologist decided the numbness in my fingers was carpel tunnel syndrome instead of Behcet's. You might want to consider a trip to NY to the Behcet's center. Dr. Yazici treats many BD patients. The common treatment is colchicine for the joints and prednisone for flares. Try not to take prednisone all the time but use it for emergencies. Dr. Yazici also prescribed plaquenil for me. It is stronger than colchicine. If the eyes and brain are affected the next step, and it's a serious one, is remicade or embrel. Dr. Y. said if my eyes become affected, he would put me on remicade. These are very strong and knock out part of your immune system. If your eyes are affected, you must take quick action and remicade takes time to get. The entire objective is to get the patient in remission. In remission, you can go off meds. Remission can last for years. If you have a flare, note what you ate, any allergic reactions, or events, like going to the dentist. It's important to find what causes a flare. I keep a daily log. You might want to join the BD chat line http://www.behcets.com/site/pp.asp... and the ABDA. I regularly go on the chat line. There are also people on it your daughter's age, which may encourage her. I also am trying some Tibetan medicine. I can let you know how it works. If I can be of help, please contact me.
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** As the gentleman mentioned below, Dr. Yazici has the first "Behcet's" clinic in the US. I have consulted with him. I think it is ultra-important to find the Dr. who you feel most comfortable with. I finally decided that I like my current Rheumie, because he believes in aggressive, early treatment; and I believe that gives the best odds as far as future outcome. Best of luck to you both, email me anytime!**
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** As the gentleman mentioned below, Dr. Yazici has the first "Behcet's" clinic in the US. I have consulted with him. I think it is ultra-important to find the Dr. who you feel most comfortable with. I finally decided that I like my current Rheumie, because he believes in aggressive, early treatment; and I believe that gives the best odds as far as future outcome. Best of luck to you both, email me anytime!**
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** As the gentleman mentioned below, Dr. Yazici has the first "Behcet's" clinic in the US. I have consulted with him. I think it is ultra-important to find the Dr. who you feel most comfortable with. I finally decided that I like my current Rheumie, because he believes in aggressive, early treatment; and I believe that gives the best odds as far as future outcome. Best of luck to you both, email me anytime!**
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Sorry for the multiple posts, for some reason it is only posting the end of my reply!
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Thank you both on your input. I will definitely try to figure out how to get in touch with the doctor you both mentioned. Also, get on the chat line. Thank you so much!
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I agree with wannbangel. You will need a good local Dr.
If it gets to the eyes, an opthamologist is essential. Keep looking until you find Drs. that try and understand how BD affects the body. All too many Drs. will ignore the BD aspect. Most of the people on the chat line know more than the Drs. Ask any Dr. you see how many BD patients he/she treated. Prednisone is just used for flares. An 8 year old shouldn't be on it too long. The fact she responds to it is great news. Anything that inflames the body can cause a flare, including a dental cleaning, allergies (food, pollen, pets), infections, injuries. The good news is that some treatments will lead to remissions and the remissions can last for years. I will let you know how the Tibetan medicine that I'm taking with western medicine works out.
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Welcome ftirman,
Please continue to share your experience and wisdom with us here! We all need to stick together, ((Heather))
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