Cafe au Lait spots at 9 weeks - what to do?

[Schmaffy]

Hi, be grateful for some advice.

DS is 9 weeks old and already has at least 10 cafe au lait spots, most of which are over 0.5cm. Internet research suggests that more than six is a pretty clear indicator that something is up, possibly neurofibromatosis, although DS is one quarter asian.

At this stage, is there anything that we could, or should, be doing? Or is it just a question of waiting to see what else might develop over the coming months and years?

I think the first thing to do is to stop googling symptoms or you will end up in a panic. Talk to a healthcare professional for proper advice - your hv or gp.
Hopefully everything will be ok.

Thanks, the looking things up and getting worried was caused by the GP mentioning that the spots were a worry at the 8 week check. DS is visiting the paediatrician soon on another matter, so will mention it then.

paed a good place to start, definitely. when's your appt?

Wednesday, fortunately very soon, as more spots are appearing every day.

wednesday's good. not too long. discuss with the paed and see what they say - even if they do refer for genetic testing etc it will likely be some time before any dx, so it's likely to be a bit of a wait, and even then i suspect just a case of information gathering until/ in case you get to a point where a specific need for intervention develops... i only know older kids with nf, so can't offer any advice on newborns. it's quite rare for tinies to develop cafe au lait spots though, so could still be pigmentation, do you think? rare enough for the doc to def check it out, anyway.

i'm sure you're googling like crazy. dr google has some bad habits though, so don't work yourself into a frenzy, and try and relax until weds - see what the paed says.

Thanks for the calming advice. Paed said "not sure, wait and see". Thinks some are pigmentation, others might be cafe au lait. Good news is that she is keeping an eye on it, and having another look in a few months.

there's a lot of that about with paeds...

good news that she isn't too worried though. keeping an eye is sensible. it won't stop you worrying, of course, but at least you have registered your concerns as well.

hello. Our ds was referred at 18 months when I told the GP about his cafer au lait marks (had about 6 from birth). We went down the genetics route and I had googled and thought it could only be NF. It wasn't! but it was something else, and in hindsight there were lots of other signs that there was something going on other than just the marks. But 8 years on, things are fine. Have learnt the hard way that googleitis is the worst disease of all!

why cant you go for genetic testing now instead of waiting? if it is cost to nhs are you in a position to pay to have it done privately, medical insurance?

What was the result Schmaffy?

Zombie