May 9 year old has recently been diagnosed with NF1. She has been getting marble sized pliable swollen places in her face lately. They will just come up and are very very painful to her. Then, by the next day they are smaller or gone all together. Is this a symptom of NF? She has also been telling me that her joints hurt and that her stomach is hurting really bad. Some times she is very nauseated, but never actually vomits. So far we have not noticed any tumors, but she does have the axillary freckling. She has also been telling me she has a hard time seeing, that her vision is blurry a lot of times. Is all this a sign of NF? We have only seen the dermatologist so far, and our appointment to see the geneticist isn't until 11/17!! We go to the NF clinic on Aug. 25 though, but it is still a long time to live with all these symptoms and not know where they are coming from! Any advise would be welcome. Thanks and God Bless!
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