My daughter has nf1 :(

[MollieMay]

My daughter has nf1, also known as Neurofibromatosis type 1. It was kinda expected as I have it as their was a 50% chance of her getting it. I'm just scared she's going to get it worse than me. I'm lucky and have quite a mild case, just worried that hers will be worse really!! I feel bad and that it's my fault she has it.

Anyone else got children with nf1?

 

[pearls0704]

Hi i have nf1 too and im on the worser end of it . I just had a baby and judging by his cafe au lait spots he might have it . I dont know yet we gonna be having a consultant appointment soon . Dont beat yourself up about it you'll love your child nomatter what

 

[Gumpyttc5]

just wanted to say hi. i have a beautiful 4 year old daughter who has nf1 too. hers just came from nowhere so was totally thrown in the deep end. she has severe reflux and milk allergies at birth so was rushed into hospital at 12 weeks it was then they noticed her cafe au lait patches. she was born with 3 had 11 at 12 weeks and now has 70 odd. they did an mri at 1 and found she also has syringomyelia (cyst inside the spinal cord) and found her optic nerve glioma. she now wears glasses due to loss of vision. considering she couldnt walk at 18 months and needed physio and couldnt eat solid food till 18 months she is doing very well now. she is in mainstream school but has 1 to 1 during playtimes as she falls a lot and keeps hitting her head. she was potty trained at nearly 4.

for the first 2 years her prognosis looked awful but she has progressed so well and goes through everything with a smile. she is such a character everyone loves her.

i do have my days when i get upset and wonder if the next mri is gonna be the 1 they find another tumor or the next eye exam will result in chemo but most of the time i am just thankfull for my little princess and everyday she is well. xxx

how old is your lo now hun? will she be having tests?

can i also ask how your nf affects you and has affected you in the past?

sorry for the long post but i dont really get to speak to many people who are going through this too xxxx

 

[pearls0704]

Hi sorry to reply so late . My little boy is now 9 weeks old he was born on 24th of september . I will be seeing a consultant on thursday and we will see from there onwards . I spent most of my childhood in zimbabwe My childhood was normal because i did not get diagnosed until i was in my teens . While at school i never ever got bullied or hassled about my condition . I have my down days when i feel very self concious and try to cover up as much as possible