Ask Kate! Can I make an NF diagnosis based on my son's symptoms?

In this "Ask Kate!" video, Kate responds to an email from a mom whose son has a number of the symptoms of neurofibromatosis.
If you have a question or comment for an upcoming "Ask Kate" video, please include it in the comments below, or email Kate at [e-mail] Kate Kelts, RN, is the Patient Support Coordinator at the Children's Tumor Foundation.
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Children’s Tumor Foundation (CTF) began as the first grassroots organization solely dedicated to finding treatments for NF. Today, CTF is a highly recognized global nonprofit foundation, the leading force in the fight to end NF, and a model for other innovative research endeavors.
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[@kristindaniel-woodvine2510]

Hi Kate - I wanted to comment on this video because you said something that resonates with my family's experience surrounding my son's diagnosis of NF1. He wasn't diagnosed until he was nearly 5 but the diagnosis did explain some of the challenges he had experienced since birth. He has always had a hard time putting on weight and has been on his own growth curve, usually in the single digit percentiles compared to peers and sometimes even 0 or below. We learned he has a hypothalamic tumor which his specialists say possibly explain these growth difficulties. He has always been slightly delayed in gross motor skills. He experiences speech delay and has received speech therapy since he was about 2. He has itchy patches on his skin and doesn't sleep as much or as deeply as other children, both which I've learned (through anecdotal evidence mainly) can be associated with NF. But there are other things that are not related to his NF1 - for example, he is nearsighted and has amblyopia. This has nothing to do with NF1 and his changes in vision are not related to optic nerve gliomas. Thank you for this video; it helps to remind me that NF1 is just a part of who my kiddo is but there is so much more to him.

[@071949]

Hi Kate! Good to see a new video from you. As always it was interesting and informative.