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Anyone on here have child with NF1?

(11 Posts)
listerlovescurry Sat 09-May-15 18:50:31

Hi, just wondering if anyone on here has a child/children with NF1? We have a 14yr old boy who has NF1 with very mild LD but has recently been found to have tumours (neurofibroma in back/body causing damage to lower spine /hip & inoperable plexiform in upper neck/throat). It would be nice to link up with anyone who is in a similarish situation :-)

We're thinking of applying for DLA plus mobility, after our Pediatritian mentioned it a while ago, & we haven't claimed any type of benefits before so this is new to us & so would be particularly interested to hear if anyone has been through the process for their child with this condition or similar - especially with mobility issues :-)

Many thanks, Kath.

Rjae Sun 10-May-15 09:40:50

A good start to applying for dla would be the cerebra guide. Sorry I do t have any experience of NF.

Ineedmorepatience Sun 10-May-15 09:57:42

No advice sorry but welcome to the board and yes use the cerebra guide to help you with the dreaded DLA form.

Good luck flowers

listerlovescurry Sun 10-May-15 12:18:33

Thanks, will have a look into cerebra, cheers.

greener2 Sun 10-May-15 20:14:30

Message withdrawn at poster's request.

youarekiddingme Mon 11-May-15 19:53:10

My DS has dark patches - a newish one his pead questioned me about too.
I didn't see the significance until I read the asd dx pathway (DS being assessed next week), NF1 was mentioned and I looked it up.

As far as dla cerebral guide is the best IMO. I found keeping a diary of everything you do to support him and what you do to help him a 14yo could do alone etc.
The dla form asks very specific questions so it's more how to fill it out than what information to give iyswim?

listerlovescurry Tue 12-May-15 08:48:18

youarekiddingme - thanks very much for the information - I'll go through the cerebra guide, it's much appreciated. If your DS hasn't been checked properly for NF, may I encourage you to chase it up - you can't leave NF, if he happens to have it, monitoring is absolutely essential, I can't stress that enough due to the unpredictable nature of the condition, as we have learnt recently to devastating consequence. If your GP isn't fully informed, find one who is, they are worth their weight in gold :-)

greener2 - yes, some large, some small, but the main early signs are freckling in the armpits and groin area, neurofibromas (lumps & bumps) on the skin, and CALs (cafe au lait birthmarks). Children & adults with NF can have slightly larger head circumference and shorter stature - although my ds is heading for 6ft. LD & behavioural problems can happen in approx 50%, hearing & visual problems can sometimes be present. Stress is a v.important factor in the health & well-being of children & adults with NF & we found this to be v.true for our son - a low stress lifestyle is a priority in our home & why we now home educate. No 2 people ever have the same combination of complications, so it's essential to be well informed. There are a large number of FB groups (UK & international), and Inspire -

is an excellent place to go to with questions if you find you need to.

Here is a link to the Neuro Foundation which has all the info you need to begin with -

1:3000 births are affected in the UK, so personally, I think everyone should be aware of NF & the very serious complications that can and do arise. GP's have caught up a lot over the last 10 years, but many health professionals remain ill informed, in diagnosis, management and treatment.

I hope all goes well for you & your DS.

Kindest regards.

MTWTFSS Fri 15-May-15 20:09:35

My dad has it. He is 60. Any questions, let me know smile

2boysnamedR Sat 16-May-15 01:57:41

No first hand experience of nf1 but unfortunately I'm a dad with dla forms.

We have a local careers support group who also help with dla forms. I guess they are a national thing? They can come and eyeball the form before you post.

Phone up and ask for the form from the dwp. Then even if you complete it in a PDF online you post the original dated one and it's backdated ( but mine take ages to complete)

2boysnamedR Sat 16-May-15 01:58:34

Dad? Dab I mean. Dad's not do good with forms in this house lol!

MTWTFSS Sun 17-May-15 07:29:57

You can download the cerebra DLA form guide here. It is extremely useful.

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