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Parenting

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My baby has a diagnosis of NF1

8 replies

Dorsetwithlove · 27/04/2024 07:01

Hello all, I’m struggling as my 1st year old has just been diagnosed with NF1. Does anyone have experience of living with this condition?? How has it impacted your life?? Any tips or real life stories would be appreciated. Thank you x

OP posts:
awayandaway · 27/04/2024 07:09

My Godson has this. He was a VERY slow developer. Couldn't read reliably until about 14. However, at 20 he is catching up, I would say he is now at the stage of most 16 year olds, cognitively. He did badly at school, and did not enjoy it at all. He got a lot of support from home, and a lot of reassurance that academics were not the most important things in life. No GCSEs as yet - still trying to get functional skills, and I think he will

Outside of academics, he has developed a wide range of hobbies and skills, and had no difficulty landing a high quality tradesman apprenticeship - he worked as a labourer for the firm first, and impressed them with his attention to detail and skills with his hands.

He has had his moments! struggled with depression as a teen, and had a couple of unpleasant outbursts - I would say aggressive, rather than violent.

However, he is one of the most sensible and practical people I know. His emotional intelligence has always been way beyond his years. He is a very skilled cook! and cooks us wonderful meals. He is an animal lover, and has always lavished great care on all his pets. He is kind and thoughtful and understanding and a wonderful human being.

Not all sufferers of NF1 have learning difficulties, your LO might not. My Godson has had few / no difficulties with his actual tumours, they sometimes grow, they have not harmed him in any way. Your LO might have a different experience.

However, this is my experience. HTH

Lots of love to you and your baby xx

Kaiken · 06/05/2024 19:16

NF1 is a rare disease. You need to go to specialised forums. Reddit has a neurofibromatosis group and Inspire.com has another.
Facebook is quite full of rubbish and trolls, as you would expect.
You can have NF1 and not be severely impacted. You can have Nf1 and have a gorgeous life.

Flowers90 · 18/05/2024 20:30

My 4 year old has just been diagnosed too. Childhood tumours trust facebook page has been great for connecting with other parents. Also happy if you want to private message me. I'm still learning too so may not be able to help much!

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Arguare · 18/05/2024 20:35

I have two children with NF1. Please feel to PM me if you want to chat but I will say that they are happy, healthy children. This must be a big shock for you.

NF is such a spectrum and it’s often the worst cases that make the media and are what comes up when you Google search so please try not to do that. Severe symptoms are relatively rare among those with NF1. The Childhood Tumour trust is a great resource. Again, please feel free to message me if you’d like to chat or have any questions. Thinking of you OP x

Raeinbow · 03/06/2024 09:57

Hi lovely, I have just been loosely diagnosed (awaiting genetics) at the grand age of 31, as well as my daughter who is 1.

I have adhd, struggle with memory and used to struggle a lot with emotional regulation. A part of the adhd is that I cant read clocks, random little things like that, other than that I don't have symptoms. My daughter however has tumors in her brain and on her eye which we are starting treatment for next week. Im happy to message if you need support, as I need some too ❤️ sending lots of love xxx

Flowers90 · 03/06/2024 13:53

@Raeinbow I'm not the original poster but my situation seems very similar to yours. I'm 31 and have just been diagnosed clinically, my 4 year old has a genetic diagnosis last month, and has a large plexiform along her spine..we are awaiting treatment for her at the specialist centre. Happy to pm if you want, as like you I know the support would be helpful! X

GreenAventurinee · 04/06/2024 15:59

Hi, how have things been since the diagnosis x

CadyEastman · 04/06/2024 17:34

GreenAventurinee · 04/06/2024 15:59

Hi, how have things been since the diagnosis x

@GreenAventurinee you might need to try an @ with the OP to get their attention Wink

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