I have been reading about CF related arthritis. My daughter is 3 yrs old and gets knee pain. It is usually at night. Often she will wake from a dead sleep screaming with knee pain. What I have read states that it usually starts after the age of 10 so I am wondering if this is the cause. The cf clinic where she is treated says joint pain is common and they do not know what causes it. I would like her to go for x-rays to ensure that it is not something else since it has been going on for months and months. My theory is that not everything is CF related and it is better to rule out any other causes, but they feel that x-rays are unnecessary. I would like to know what others think? I spoke to her pediatrician and he has agreed to send her, if that is what we want to do, but I was wondering if other parents encountered the same problem with young children.Thanks,AM
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Arthritis
- Thread starter anonymous
- Start date
my daughter had a lot of leg and knee pain around the age of five cf clinic said there was nothing wrong with legs ,family Doc did all kind of test and nothing showed so they say it was growing pains , we just rub her leggs down with loition before she went to bed and it did help at night with leg cramps ,she's 10 now and has had no pain for a few years in her leggs or knees ( except for a broken leg ) I hope this is all your daughter has and not arthritis.cf mom to 10 year old twins
my son is 4 yeras old and does the same thing, each night and some times late afternoons he complains and some times cries over his ankles and behind knees cramps and pain, i live in Jacksonville, Fl and Dr. Shaffer is his pulm/cf doctor at Nemours and he tells me it is lack of salt and dehydration and his is too young to have (growing pains). His regular pediatrition tells me it is growing pains but I do not believe this because I have noticed a pattern when my son is extremely active in a days period and lips dry seems to be the worst for the pain, when I replenish him with water he seems to be better. Dehydration, seems to be what I have concluded the problem to be. I hope this helps you, please feel free to e-mail, I am a huge advocate for the CF foundation and try to learn all that I can.
I am now 30...with CF...and CF related arthritis. I didnt start having problems with it until I was about 9 years old, but it was pretty bad. My whole body would start aching...like I was getting the flu...I would get a fever. I also got a rash of small red bumps all over my body. These bumps were usually raised above the skin a little...and had lots of heat in them. Sometimes...some of these little bumps would even get bigger. Then the pain would get so bad....I couldnt even walk. It usually lasted anywhere from 3 days to a week. I took ibuprofen for a long time for this...and usually helped. Now that I have had it for over 20 years...ibuprofen no longer works. I dont get the red rash anymore...but I still get flu like symptoms and a fever before a "flare up". They last alot longer now too...and the only thing that works for me is prednisone....at least 30-40 mg. I've had x-rays of my hands, feet, and knees...and they show no signs of deterioration...which is good. I am seeing a rheumatologist and he is doing some research on this topic. He started me on some anti steroidal meds...but so far...not much help. I can only tell you all...that this form of arthritis doesnt affect the bones...but is an AWFUL AWFUL pain. Good luck to all...Take care...If you have questions...I'd be more than happy to answer any.Dea
to the mom in jacksonville, florida... i am from florida and trying to figure out how to get back there. my son is 5 years old today 2-6-04we are in georgia and all relatives are in florida. i grew up in florida and my husbands relatives have now settled in florida. but we have a thriving business in georgia, and a great medicaid program caled the Katie Beckett program that covers alot of his meds and hospitalization. i am told by nemours that they have a few patients that are tying to get to georgia to get the care we have. we are part of the biggest CF Clinic in the southeast, and can see a pulmo, a gastro, a nutritionist, a case worker, a resp. therapist and all in one visit. so basically, its care versus family and support.i guess what i am asking is what do you think about the care in florida, we'd be miving back to jacksonvlle or gainesville, or orlando,id love to hear from you in case you get this message,,,its woodnypmh@alltel.netthanks,juliet and the three muskateers
My child is 8 years old and has CF related arthritis....He had leg and knee pain very bad at night and sometimes during the day.He often wakes up crying of pain. One night afer a bad episode, i noticed growth on his foot. It grew in 2 weeks to his ankle. He has surgery and biopsy that showed synovitis which in turns can be caused by arthritis. He now has a new growth on the other ankle. He also had fevers ( (Unexplained) He is on arthritic meds and doing good