My daughter, who is now 13, has been suffering of severe fatigue and joint pain for nearly 6 years. Up until around the 2nd grade, she behaved like a normal child should, running and playing active games with her friends. However, she came down with the stomach flu in the middle of the 2nd grade, and she was out of school for around 11 days, vomiting every time she would move. Ever since then she has not been able to run with her friends for more than a few minutes, because she gets extremely tired quickly. She also has severe joint pain, especially in her knees. She also has said it feels like she can not get a deep breath. She says it's hard to describe, but the best way to say it is that it's almost like she has a little bubble in the tops of her lungs, that she almost never fill.
She has had x-rays of both knees, neither of which showed anything abnormal. She has had an EKG and an echocardiogram, neither of which showed anything abnormal. She has had countless numbers of CAT scans and MRI's over the years, and has also had a test where they injected dye into her brain to detect abnormalities; everything has come back normal. She has also had many blood panels, all of which have also come back completely normal. Recently, she also had a test to measure her intake of air, which came back fine, and a fatigue test, which showed the tired more quickly than peers. The doctors have determined she does not have Lupus or Lyme disease, but apart from that, all that has been said is that it's all in her mind, and is basically crazy. A psych doctor ruled that out. Any suggestions?
Also, I forgot to say. It isn't a school or homework avoidance situation, as it has stopped her from doing things she likes with her friends as well. It has not affected her cognitively; she's the top student in all of her courses. Thanks for any help.
I agree with the idea of Reactive Arthritis. Has she been tested for the gene HLA-B27? Also , has she had a holter monitor done on her heart? This is a 24-hour EKG while she goes about her normal activities. Did she get a full panel of Pulmonary Function Tests? How about a complete Autoimmune panel, and Thyroid panel? Has she been to an Endocrinologist, or a Rheumatologist? If you give me more info on what blood tests she's had, and what types of specialists she's seen, I may have more good info for you.
I would ask her physicians to check her for Celiac disease (gluten intolerance). They can do a simple blood test to find out whether or not this is causing her symptoms. If she has the test, be sure to make sure she does not avoid gluten (wheat, rye products, etc) before she has the testing done... otherwise, you will get a false negative result.
Also, many people have false negative tests for lyme disease. It is recommended that a patient should have at least 2 tests for lyme disease if the first one is negative. The reason why is bacteria for lyme is not present in all blood samples.
You say her symptoms started after the stomach flu. Reactive arthritis also known as Reiter's disease could be what you are looking for.
Reactive arthritis is caused by bacteria. The bacteria cause a person to get sick, and then later travel through the body to the joints between bones. The joints swell and become stiff and painful. This is called inflammation. Reactive arthritis most often affects the joints of the knees, ankles or toes. It can also affect the eyes or skin or muscles.
Symptoms usually show a few weeks after the infection. In your case the stomach flu.The infection may have been food poisoning or another illness of the intestine.
Stiffness, pain and/or swelling in and around joints that seems to have come on for no reason. This includes tedon as well.
There may be pain in the lower back, or on the heel or bottom of the foot as well. Pain and stiffness is in some cases worse in the morning. .
Fatigue is a symptom as well as eye problems such as pink eye and mouth sores or canker sores.
If you google reactive arthritis or reiter's syndrome you will find loads of information.
Hi have you ever taken your daughter to an endocrinolgist and let them do specfic blood work especially thryoid antibodies. As for her stomach there are quite a few stomach diseases to look into such as Crohns, celiac disease and i am not sure what this one is called but some people cannot tolerate fats their bodies wont digest it. With celiac wheat, gluten and many things can also can cause great stomach distress, even milk. Please see if you can have your daughter tested for any type of stomach disease involiving the wheat, milk and fat family. My sisters friend was sick for a long time throwing up and stomach pain till she found out she had celiac disease, she changed her diet and every sympton she had disappeared. For the fat tolerance I knew someone elses child that had this problem and the kid was sick for many months and it was found out that her body couldnt digest fats. I wish you well for your daughter and hope you find the answers.
You may also want to get her tested for the Epstein-Barr virus. It generally doesn't present in people so young, but who knows? It can often start on the heels of a bad flu, like your daughter had. The symptoms she's experiencinh don't really match up with the virus, but with Epstein-barr, there are so many symptoms it can include, you may want to test just to rule it out.
Hi, I think that Rieters Syndrome is very unlikely in this case. I suffered from this myself several years ago and although I had a relatively "mild" case of it my ankle and knee became significantly swollen and extremely painful over night which prompted me to seek immediate medical attention - blood work showed I had highly elevated sedimentation levels but this young lady has not had anything unusual show up in her bloodwork. It is also highly unlikely that Rieters syndrome would not have cleared up after this amount of time and does not it does not effect the lungs nor does it cause nausea after eating. I agree, however, that referal to a rheumotologist would probably be a good idea. Also, have you seen an infectious disease specialist since all symptoms started after her illness? A food allergy also makes sense - has your dauther seen an appropriate specialist to rule this out?
Another possibility is ME which is a chronic fatigue syndrome that can present itself after an illness - your daughter only displays some of the symptoms of ME though.
If your daughter tests negative for all of these possible conditions, consider checking out the Marshall Protocol website... google search "Marshall Protocol". She has many of the symptoms of Th1 inflammation and still can be treated. In fact, all she needs is 2 vitamin D tests and the MP physician and/or moderators will tell you whether or not she would be a good candidate for the protocol.
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