A few years ago when my daughter was 13, she came home with a swollen left foot and ankle. She had been wearing heels that night, so we thought perhaps it was from that. Her foot started to hurt, so I took her to an orthopedist who tested her for lyme, but it came back negative. They put her in a boot, and it seemed to help a bit. Fast forward to January 2009, and her foot started swelling again, and both her feet looked so much bigger and wider. She also has bunions. We tested her for lyme disease, and it came back positive, but her pediatrician would not treat her. She waited a month and retested and this time it was negative. So she felt she didn't have lyme disease. Her symptoms got worse (she always had a very painful scalp for years now, but that increased); she was unable to focus and concentrate to the point where her grades dropped and we took her for psychological testing.
By the fall of 2009, she was much worse, and her foot kept swelling randomly. She gain tested positive for lyme, but this time she was treated with 100mg of doxycycline for 30 days. Her focus and concentration came back, and she went back to being an A student. However, her foot kept swelling. The pediatrician told us to see a rheumatologist, but I wanted her to see an orthopedist first. They xrayed her foot and found nothing. Months went by and still swelling - but it got worse. The rheumatologist wanted $650 for 45mins and a credit card on file to charge $250 for missed app'ts. I said forget it. I took her to an infectious disease specialist but he was stumped (no tests were done). He wanted me to bring her in when the swelling was there. I told him her feet are ice cold all the time even in the summer. Today it was in the high 90's and both feet and toes were so swollen like little piggies.
She had an MRI 3 weeks ago, and nothing showed there either. It is so disturbing, and I don't know where to turn next. It is frightening to see. Granted, my daughter doesn't have the best diet, but it isn't the worst. She eats what I give her - veggies, meat, fruit but then there are days with bagels, cold cut sandwiches, cereal. I make her drink a lot of water, but she adds natural fruit juice to it (small amounts). She is not very active right now and she does dance at school.
I was beginning to think it might be lupus - it's frightening. She is breaking out and has somewhat of a red rash on her face like rosacea.
Random swelling with the foot being fairly normal in-between, suggests diet as a possible cause. I know of one case of foot swelling that was caused by a potassium deficiency that varied with the amount of potassium in the diet. You can easily test for this by having your daughter use a salt substitute during an episode of swelling. Salt substitutes contain potassium chloride instead of the normal sodium chloride. If that doesn't help, keep track of the foods she eats to see if the swelling correlates with presence or absence of a particular food. Good luck.
I think you may be right. I began thinking of lupus the other day out of the blue. It dawned on me when I started connecting to the symptoms. She doesn't have fever thought, but I guess a rhumatologist is the best route to go. I have to find a pediatrician because she is absolutely useless in diagnosing and gets annoyed when you ask about symptoms. She just refers you to other dr's. I could do that myself. We did see an infectious disease specialist as I may have mentioned, and he was perplexed and said he would be able to tell without seeing the foot (or feet as yesterday) unless they were swollen to determine if it was a venous problem. She's been tested years ago for allergies, just by an allergist, so I should perhaps see if the rhumatologist could find out about celiac as well.
After lots of tests by a new internist, it turns out my daughter has hashimoto's disease. Her pediatrician tested her thyroid and said it was negative; however, her new internist did food allergy testing along with a battery of other tests including 3 additional lyme tests (for 3 other bugs) and more thyroid tests which showed a hypothyroid. Hashimoto's is a different form of hypothyroidism, and she had all the symptoms. We went to Singapore for 3 weeks and her feet were so swollen, and I emailed a picture of them to the dr. Despite it being in the high 90's all the time, my daughter's feet were constantly cold. She had so many of the other symptoms as well - pale face, heavy prolonged periods, fluid in her feet and ankles, a weight gain of 10lbs out of the blue, depression...and now that we found out her allergies, that has helped so much. She was very allergic to chocolate that she ate so many times a day plus milk and soy. The dr prescribed omega 3's and probiotics and already the swelling has come down all together. She can now move her feet and toes where before she had no feeling in her feet and she could feel the water. It was horrible. So we are taking it day by day right now.
Thanks to all for your responses.
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