My beautiful and talented little girl inherited NF1 from her father. His, a severe case since childhood has effected him his whole life. When we took our daughter for the first time at 4 months to a specialist in NC where we live, they weren't ready to make a diagnosis. Really all they did was an outward examination and then encourage us to bring her back if things changed. More spot, any lumps ect. Unfortunately my husband left shortly after that, and this disorder was all but forgotten. Her head was a little on the large side, then at 9 months when she began walking I noticed some issues with her legs. I didn't realize at the time these were also good indications I should have followed up on with the NF specialist. Instead she received care through Brenner Childrens Hospital. She spent age 1- 2 having her little legs casted every 2 weeks with new clean casts. When they came off every 2 weeks she did physical therapy for a good quarter of the day then was re casted. She was also given a waist girdle like belt to help correct her posture. I must stress these issues were almost neglected because they really didn't seem "that" bad. She was still able to walk very well, was 95% in highth, 60% in weight . Then for the next several years things were great. In the summer when she would tan I would notice a few more spots, but nothing else I would associate. She was extremely athletic. Did beautifully in school, advanced in math. Then her 3rd grade yr last year I began to notice changes.She wasn't growing like she once had. She was always tired. While her teacher doted on her at school, ADHD symptoms at home began affecting our family life. Looking back I suppose they had always been there but weren't a huge issue. Reading comprehension became impossible for her. At 9 she is still wetting the bed every night and occasionally during the day even. Always goes frequently to. Severe stomach pain developed.. and comes on randomly. Headaches are becoming more frequent. She has freckling as well as numerous spots, some darker than others. All grow larger every year most are 1-2 inches each. We are now in the process of getting her officially diagnosed. I have done much reading lately and am ashamed to say I didn't want to believe hers would go anywhere. She seemed so typical it was easy to make the scary disappear. Now I fear my lack of knowledge on this subject could be hurting her. Anything anyone can share will be helpful. I definitely feel she needs to be scanned if for nothing more than a base reading since puberty will be in the next few years. I guess I would like to know of others that may have had similar issues with bed wetting...stomach pain and what was found. Are there some tests that are better or safer than others? Really anything please!
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