Hi my son have only 1 patch on the side of cheek about 2inch in diameter. Its smooth and very define line of where it is. It showed up about a month or 2 old. Dr. Diagnosis as just cafe au lait spot. Both my wife and I do not have history of it nor any family members. Please help.

Doctor . Could you please suggest some foods to suppress or kill nf1 Tumour.Please suggest my daughter is just 2 years old she is suffering from plexiform nf1.

Hi Kate, do you know if it helps at all to put on sunblock or is there anything we can do to kind of prevent more freckling from appearing during summer? I noticed a few extra freckles on my sons neck and I’m just wondering if there’s anything I should be doing to help slow this process down. Also do you know if there’s any fading creams? I know they have fading cream for brown spots for adults but is there anything for children? Also one more question my son is starting to show difficulty concentrating he’s in first grade super smart , but I see some sensory issues are they common in NF1? TIA

@katekeltsctf9274

Жыл бұрын

Hi Melissa, these are all great questions. I will answer very briefly here, but please feel free to reach out to me via email as well (kkelts@ctf.org). Sunscreen is a very good idea for any child spending time outside. It won't prevent the appearance of new CALS, but it is important for skin health for all children and adults. There are currently no creams that lighten CALS or freckling. For any school-related issues, I recommend speaking with his teacher and considering a neuropsych evaluation. Learning differences and ADHD is common in children with NF1. We have a great brochure about this in our Resource Library here: www.ctf.org/images/uploads/documents/NF1_Learning_brochure_110819_web-ready.pdf

What would a very large cafe au lait spot mean? It covers the majority of my upper leg and lower torso. I was not diagnosed with NF in childhood, but have had various "cysts" on glands (ovaries, thyroid) in my body and I have a cluster "lumps" on my ankle that has been there all my life. I have what has been called a lipoma or tumor on my back which has grown and now has to be removed. I've suffered with health complications most of my life. None ever specific enough to be diagnosed. Very curious to know if this large cafe au lait mark is significant.

@haveagoodday8937

3 жыл бұрын

Same here What are you suffering from

@childrenstumor

2 жыл бұрын

Thanks for your comment. Only a doctor can make that assessment for you. If you need help finding a doctor who is familiar with neurofibromatosis, please visit www.ctf.org/doctor

Our 10-month-old was recently referred to a gentist due to having multiple spots of what appear to be café au lait spots with just one big one like the California size one on his front stomach area. The smaller ones are around the back area with a couple smaller ones in the front of his chest. He’s never presented with any issues whatsoever other than a murmur at birth. We’re hopeful to get some clarity soon and are keeping our baby boy nice and strong

@kriziajuarez888

Жыл бұрын

Any update? My six week old presented similar spots and we are waiting to see a genetic counselor.

@alyaziazia6016

Жыл бұрын

@@kriziajuarez888 same here i just gave birth last month and my son had cafe au lait spots they refered as to optomologist next month and demarmatologist and neurologist..

@alyaziazia6016

Жыл бұрын

@@kriziajuarez888 my son just diagnosed with NF1

@kbm124

9 ай бұрын

​@alyaziazia6016 did you do genetic testing ?

@kbm124

9 ай бұрын

How is your child doing ?

HolA tengo mi niño de ,6 añitos q tiene neurofibramotosis y quisiera escuchar en español tu información por que no sé cómo lo puedo ayudar y estoy muy desesperada ayúdame por favor

@katekeltsctf9274

4 жыл бұрын

Hola, lamento que estos videos no estén disponibles en español. Tenemos folletos disponibles en español en nuestro sitio web aquí: www.ctf.org/images/uploads/documents/CTF-NF1_SPAN_5.17web.pdf

@user-ov9ht2mm9x

2 жыл бұрын

moi aussi ma fille le même ca jaimerai bien maidé

My son has café au lait spots that are growing but are only on the right side of his body and freckles in the arm pits. What does this mean. Slow going with Nero. Can you talk about the difference between all over the body versus only 1 side. Thanks

@katekeltsctf9274

2 жыл бұрын

Hello Tiffany! This is a great question - you can watch a video I did that discusses what is called Segmental NF here: kzread.info/dash/bejne/iXx5lcpym86ap5M.html And please feel free to email me directly if I can help!

@kbm124

9 ай бұрын

Hello there ,how is yoir son doing?