My 20 month old daughter was born with a huge Cal spot on her left side. I never thought twice about it being anything other than a birthmark. Her doctor has always kept a close look at it but has never showed any concerns. Thurs I took her to the doctor and he looked at her spot and said it was seperated so it was now 3 spots plus the one on her back which made 4. He said not to worry he just wanted her to see a dermatologist. Friday night I found 2 more spots on her and im freaking out! I also have spots on me that I always thought were birthmarks. Am I going crazy?? Was good to read some of the positive posts because Ive researched online and only seen the worse case scenarios. I am praying to God that my baby is okay..Not sure where to go from here. Doc referred me to dermatololist and a neurologist.
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Not sure if My child has it
- By Jaylasmom
- Posted October 25, 2009 at 12:30 pm · 8 replies
- In NF1 and children
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- By Jaylasmom
- Posted October 25, 2009 at 8:35 pm
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Found another mark on her which now makes 7..
- By joeysmom
- Posted October 25, 2009 at 9:29 pm
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She's almost two and I bet she's doing just great. I hate telling anyone not to worry because, obviously, mom's go into super worry mode and ask Dr. Google about symptoms and see everything. It's frightening. The good news, even in some pretty bad cases, things are medically fixed.
My son started showing symptoms as early as a few weeks old. And started having problems right from the start. We took care of it. Things are better and he's doing great.
Sure I wish he could have had a life that did not include all those doctor visits, but you know what? He's been through a lot but he's such a happy boy and loves nurses and doctors and is normally the most friendly most outgoing child in a group.
- By sweetiecat
- Posted October 26, 2009 at 10:00 pm
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I have over 7 CALS and I have a very mild case of NF. So, don't freak out yet. I didn't get diagnosed until my mid 30's. If he does have it is actually good to find out now early on. Did he make all of his childhood marks. Like did he walk late? I had trouble learning in school and would have benefited with the extra help kids with NF get today. The dermatologist will know right away if it is NF and there is a blood test you can get for yourself. If the dermatolgist tells you he has the elephant man's disease HIT HIM! :) NF is now what he (John Merrick) had. Good luck!
- By Jaylasmom
- Posted October 28, 2009 at 11:27 pm
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Thanks so much for the feedback. My daughter is 2 and did walk late but that was really the only thing she was delayed in. We go thurs to the Neurologist to see whats going on with her. I actually have Spots on my wrist that I never really paid attention to until now. Im 27 and had a learning disability my whole life I was diagnosed borderline MR so as of right now theres so much running through my head..like do I have it too? My aunt was recently to a neurologist and they found lesions on her brain not sure from what. Wondering if this is something in my family that no one knew about.
- By Raulargentina
- Posted October 29, 2009 at 10:07 am
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If you have doubts, I think you must apoint an NF specialist, you can find one in www.nfinc.org
- By Jaylasmom
- Posted October 29, 2009 at 2:03 pm
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Thank you so much! I never heard of neurofibromatosis until last Thursday and since I have joined this group I have learned so much and I thank all of you for that. I will actually know what im talking about when we go to this doc on Tuesday. Im praying for the best for Tuesday!
- By MegR
- Posted November 9, 2009 at 1:27 am
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Last Thursday was the day that our pediatrician mentioned it to us too. (4 days before his 2nd bday, our kiddos are so close in age!) He, too, only has the cafe au lait spots. But he also had sectoral heterochromia (different colored eyes) which have lessened and now is hardly noticeable. I haven't found any info saying that this is a symptom of NF, but when I look up heterochromia is has said in several places that NF can cause it. Anyways... I know the feeling. I will keep you and your sweet Jayla in my prayers! Our appt is Tues, but it's just with an opthamologist. He just told me yesterday that I should take him to a neurologist.
- By Jaylasmom
- Posted November 9, 2009 at 8:47 am
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Thanks so much MegR and good luck with your upcoming appts. Jayla was to a opthamologist Friday and everything was fine THANK GOD! Our appt last week was with a pediatric neurologist and that is when she was diagnosed. They diagnosed her fairly quickly due to the cafe spots and because of the symptoms I have as well. I have cafe spots I did not get until my early teens and I have bumps on me that I have always thought were cysts. This support group has helped my husband and I sooo much because by the time we made it to her first initial appt I already knew she had it and I knew everything there was to know. Having all this knowledge softened the blow for us. Thank God!
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