Hi all

Ever feel like its nonstop, all the potential medical probs associate with our LOs? Sorry I am feeling a bit morose at the moment. I reaslise that kids get ill all the time but I just think that Morgan has had enough worrying things happen to him!

The latest is he possibly has NF1. Even though he still sees loads of doctors for his various issues (hv, gp, cardiology and neonatal) none of them noticed all the coffee coloured birth marks. Heck not even his grandparents or the child minder who all see him more during the day than me spotted them. Well anyway being the paranoid Mummy that I am I got him a dr's appointment and we are being reffered as the d thinks its NF1. I studied this a little in uni and I have been refreshing my memory on line and I really don't want Morgan to have it. I know I don't get a choice in the matter but still I want to go on record as saying No just in case the powers that be read this forum lol!!

Morgan has done really well with all his other challenges he has managed to become a happy healthy little boy dispite the shaky start. Why does he have to have more stuff thown at him? Argh! I know noone can answer this but it feels better to get it out.

Anyone got experiences in NF1 preferably of a mild form that isn't a horror story like all the ones on the internet?

If you got to he end - I am amazed but thanks for reading.

Love a very stressed

Kath and Morgan xx

Born 19th July 2008 - 2 months early!

Proud TFW!!!!

 

Hi Kath

Mum's never stop worrying do they eh?  Oh dear, it does seem to be one thing after another.  I must admit I didn't know much about NF1 so I had to google it.  The website I looked at did say that most people will not develop all the symptoms associated with NF1 and indeed many people will go through life with only the cafe au lait spots, it did also say that as often only the people with the most severe symptoms of NF1 are reported in the medical media it makes it seem more common than it actually is.

Here is the link if you want to read the whole article yourself if you haven't seen it already

http://www.understandingnf1.org/exp/int_exp_wci.html

So, I'm afraid I don't have any personal experience of NF1.  How long will it be before you are referred to a consultant?

Keep us posted, lots of love to you all

Karen xx

Karen xx

Cl - Premature & special care babies