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does anyone know much about nf1?

(18 Posts)
Peachy Tue 12-Aug-08 12:10:44

ok background:

as you know 2 of my boys have asd, either diagnosed formally or effectively.

However at ds3's first paed visit the paed quered cafe au lair marks, and said she was going to do bloods but never did.

the reason this has arisen in my mind is that the baby has 2 of these marks, one in the armpit is rather large, and when I looked online the associated lumps are the ones I get but gave up on doing anythiing about as the one I had removed scarred badly, so I just left the other one and have another 2 now.

Looking through the stuff on nf1 the signs aren't that different from asd, esp. the sort of asd ds1 has with dyslexia etc on top.

Is it worth asking Paed do you think? Or am I picking up pancky sgns that ds4 is mnot ok, which issomething I knew i might do?

sarah293 Tue 12-Aug-08 12:25:04

Message withdrawn

Peachy Tue 12-Aug-08 18:19:49

Saw Paed for heart scamn today (all ok), he thinks I may be on to something so Bas has been referred to our usual Paed

definite sense of deja vu sad

cocolepew Tue 12-Aug-08 18:29:05

My DH and DD both have this.

cocolepew Tue 12-Aug-08 18:31:13

YOu have to have a certain amount of cafe au lait marks bigger than a 5p piece, there will be 'freckling' in the armpit and around the groin area.

Peachy Tue 12-Aug-08 18:33:31

Bas has 2 but Paed sad can appeaqr any time until 5 years?

Dad has had surgery to remove growths that has resulted in a loss f sensation in one leg, he's never asked what they are though!

cocolepew Tue 12-Aug-08 18:33:55

I think my DD has a lot of traits in common with Aspergers. I looked online a few months ago and it is mainly mentioned in the US sites about children with nf1 being a bit asp. Dyspraxia is a sympton.

Peachy Tue 12-Aug-08 18:34:04

(should say, Bas currently 18 weeks)

cocolepew Tue 12-Aug-08 18:36:49

MY DH thinks he inherited from his dad, but it's impossible to get any sense out of his parents. He had a massive tumour removed from his back a few years ago, and a few small ones from his chest. As he's got older he's got a lot more, his are mainly on his trunk. DD has growths just under the skin on her back and around her breast area.

cocolepew Tue 12-Aug-08 18:38:40

DD had 2 on her arm at birth we knew what they were because of DH. She went to a Professor of Genetics at 3 months for a formal diagnosis.

Peachy Tue 12-Aug-08 18:42:39

ds's dx is as / hfa with dyslexia, was screened for dyspraxia and just abve cut of

ds3 has severe language delays with asd signs but he is more social than your average person with asd so currently they describe him as 'in a grey area'

I have growths on my arm, thigh, beneath my diaphragm area (well it was under my breasts but 4th pg saw to that!) but the one on my knee that scarred was all I bothered with once I knew they were not dangerous. GP did say it was a neorofibroma but I only had one then.

It would be good to find a cause for the boys sn (both are severe enough for dla and statements) but it'd be sad if Bas is indeed sn, although even if it is ASD he's high risk and we knew that when we had him. DS2 ewould be most upset as he feels he gets a raw deal as the only nt one out of the older 3

cocolepew Tue 12-Aug-08 18:48:29

My DD is classed as SN, she's actually very bright, which can be a sign of NF1. She had very delayed speech, delayed at walking, is still very clumsey, is overly emotional, obsessive, crap spatial awareness. She had speech therapy and her tongue cut to loosen it. But she still has problems with speech, she's hard to understand if tired and has a twisted mouth. She goes to a cranial oestopath every 3 months and this helps.
DH had a slight stutter when young and was clumsey and he isn't the best at reading out loud, but not the sort of problems that DD has.

cocolepew Tue 12-Aug-08 18:49:16

isn't classed as sn. sorry.

TakeMeHome Tue 12-Aug-08 19:12:26

My ds (age 8) has NF1 - diagnosed at 10months due to lots of large cafe au lait spots. These increased in number from birth and now he has loads, but no tags yet. We saw a geneticist for a diagnosis but no bloods were ever taken to do a test.

He is regularly monitored for fibromas growing on nerves, especially optic nerve. He also is checked for hypertension and scoliosis, but no problems there yet.

He also has a heart murmur and more recently diagnosed with autism.

Peachy Tue 12-Aug-08 19:19:03

The BP thing interests me too as I am the only one in our family not on meds for hgypertension, even though my sisters are only 30 and 33

mind, I am a good few szes smaller too

cocolepew Tue 12-Aug-08 19:56:46

My Dh has his blood pressure taken yearly, but has been fine. DD goes to the genetics clinic every 2 years. She's had a mri scan to check for tumours on her reproductive organs and gets her eyes checked at the optician. She doesn't have scoliosis but her back curves in, very deep (can't remember the proper name) It makes her look like she has a big tummy and a sticky out

Peachy Wed 13-Aug-08 11:13:14

Ah well all the females n our family are known for that figure shape (they call it the /godfrey arse' after my maiden name!) but I suspect that's not de to anything other than food

mum24boyz Fri 15-Aug-08 15:21:59

wow, havent managed to get on here for ages, but my dh and ds3 both have nf1, dh has had several lumps removed, 2 fairly recently, ds has a lot of freckling and around 9 cafe-au-lait marks, his 1st appeared when he was around 4 wks old, and dh's mum said that was the same as dh. dh had speech problems at school and today i suspect would have been classed as sn. ds is sn and is supported at school, has many autistic traits but paed refuses to diagnose asd, despite apparently aspies being fairly common in nf1 i am told,
however he too is exeptionally bright and at present i am looking into hyperlexia as a possible cause as that is very similar to asd apparently, but its a speech and language disorder. my ds was diagnosed quite young due to the family history, dh was only diagnosed later on.

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