Suspect Nephew has FASD

[PrincessPopple]

Over the years, it’s become increasingly apparent that my DHs nephew (7yo) presents with all the physical features of FASD (as in textbook if you Google them). This is obviously very upsetting, but doesn’t seem something that the extended family (including his parents or grandparents) have explicitly picked up on. Equally, I am assuming the HV didn’t pick it up (although my understanding was that their HV service was very poor and sporadic - DN was tongue tied for several weeks before that was picked up!) I am also not aware that school have, although I don’t know for sure. I am a professional who works in this area though, and it seems increasingly obvious.

As time has gone on, DN has struggled to meet his developmental milestones, is small for his age and struggles a LOT with eating. This causes a lot of stress for his parents and grandparents. My AIBU therefore, is would it be unreasonable to suggest the potential that he may present with FASD to his parents, as something that they might (or might not) want to look into, in order to help them to better understand DNs difficulties and to possibly help him with these, or would it be better to just stay quiet. He’s not my child and the suggestion would likely be hurtful to them?

YABU - say nothing
YANBU - say something

a)they might already know, b)they might had already had another diagnosis, or c)if they wanted your input they would have already asked
Exactly this. Very likely that one or more applies here. They know you're a paediatrician. Their child has developmental problems so if they had wanted or needed your help they would have already asked for it

@PrincessPopple

Hi Jumps, yes, I’m aware of those (I’m a paediatrician for context), I just need to find a shame-free way of raising this or just minding my own business! Thank you though.

Ring the school and flag it to them anonymously.

Before DS I drank a lot and was a 'party girl'. I didn't touch a drop of alcohol when I was pregnant though.

Sorry to derail the thread slightly

FASD is more nuanced than whether the parent was a dependent drinker/alcoholic. When the mother drank during pregnancy is relevant, and binge drinking in early stages of pregnancy (eg when unaware) can cause FASD. It is a spectrum condition and of course it doesn't in all cases but it does happen. I've worked with two (unrelated) children this year that have been diagnosed as older children in those circs (one has subtle facial characteristics, the other doesn't have any that I could pick out but was always much smaller than her siblings)

OP in my experience I've only known children with the more severe forms of FASD who have been diagnosed or monitored for it when very young so I don't think the health visitor not flagging it is unusual? Most children I've known have been diagnosed once they're in school and the gap starts to widen between them and their peers - often through more generic assessment pathways to start with (eg ADHD, ASD)

You also work in a specific area - which means you will have some level of skewed view on how common issues are in the general population but never reach secondary care.

The messenger is always shot. Unless you have a magic pill to cure the problem, best to let the world unfold as it will.

I agree that raising it would cause offence

@ghostyslovesheets you intimated a professional told you that by stating one glass it all it takes to do damage, then in the next post when someone asked if you were an expert, stating you had been ‘trained’ by a FAS expert.

And yes I do get cross when people talk rubbish and try to assert it as truth, particularly in an area where many women (as evidenced by threads on here) then panic because they had a few glasses of wine and someone said it only takes one glass to do damage and that person ‘was trained by an expert*.

Of course there isn’t tons of recent evidence that having a drink during pregnancy doesn’t cause damage. Think about it, to get that evidence you’d have to be doing experiments on pregnant women’s unborn babies - which unsurprisingly isn’t ethical. However there is quite a bit of evidence gathered in other ways. If you really want to learn for the future and be better informed then try reading Emily Oster’s Expecting Better which brings this evidence all together and analyses it. Spoiler alert - having one drink doesn’t do damage.

I will also add my son has a genetic condition that when seeing the geneticist she asked if I drunk during pregnancy.. I'm tea total and I was very offended that he thought I could have caused my sons issues . There are a myriad of conditions that cause similar traits and facial features and won't be her fault .

@huuuuunnnndderrricks

Does he have the facial features?

OP has said he presents with all the physical features.

oh I think you need to read my posts again because I absolutely did not say any of that - I get that for some reason you are irrationally angry with me - but I am not an expert - never said I was - I just said - in response to comments about the OP's relative being a 'party girl' that there is no safe level - that's NHS advice

I haven't been 'trained ' in anything - part of my job is to support young people - some of whom have FASD so I had some training from an FASD expert in the subject .

I'm sorry if any of what I have said has pushed your buttons but I haven't said anything factually inaccurate

I will also add my son has a genetic condition that when seeing the geneticist she asked if I drunk during pregnancy.. I'm tea total and I was very offended that he thought I could have caused my sons issues . There are a myriad of conditions that cause similar traits and facial features and won't be her fault

It isn’t because they thought you had caused your sons issues or that anything you did made a difference.

It’s basically information gathering. The more they know about your life and circumstance, they easier it is to rule some things out or in, or even just keep for records and research.

For example this thread- pp have pointed out that there are other conditions that have similar symptoms to FASD, but have nothing to do with alcohol.

By asking you if your drank alcohol, the geneticist can then put FASD as unlikely, and start looking at other causes. Wasting time looking for FASD in someone who doesn’t drink is going to hold up the diagnosis.

It isn’t to cause offence, or pass judgement, it’s to help get an accurate diagnosis and treatment as quickly and efficiently as possible.

Your post definitely did read that you were saying even 1 drink could cause FASD ghosty. That might not be what you meant but that's how it read as I remember thinking WTAF when I read it.

As for safe levels my GP told me the safe level was 2-3 units 2-3 times per week and that women were often told that nil was the only safe level because it was a view held by some policy makers that women wouldn't count the units properly so best to just tell them nil.

ghostyslovesheets
you don;t need to be 'a drinker' for a child to have FASD - there is no known level of risk - one drink might be enough to cause damage

sometimeswinning
Are you also an expert???

ghostylovessheets
No not at all - I just did some training delivered by a FASD expert last week

What part of this doesn’t suggest you’re saying an expert told you this last week?!!

You’re being deliberately obtuse. And trying to dismiss me by calling me ‘irrationally angry’. I’m not angry with you, I’m frustrated with what you asserted and then suggested it was from an expert when challenged. Which is a perfectly rational frustration, nothing irrational about it.

agree with others saying to say nothing. sounds like the children need an aunt with her eyes wide open and an aunt who cares. It is very sad. But getting the mother's back up will only make things worse.

presuming he has FAS, was can actually be done? I don't think there is a cure. So you're not making his outcomes worse by not saying anything are you?
Good luck.

I'm slightly puzzled that your diagnosis is based on his facial features, being small and eating problems. (What about ARFId?)
For most parents of kids with fasd it's the behaviour that's the most problematic, the violence, the impulsiveness etc. Are you seeing that.
Agree that you should leave well alone

@JesusInTheCabbageVan .. they usually have a very distinct long Philtrum . Although other gentic conditions present facially too .

I think there's not much to be gained by going to them with the question...they will most likely be very defensive and like others have said it could cost you the relationship, with nothing in return.

[quote huuuuunnnndderrricks]@JesusInTheCabbageVan .. they usually have a very distinct long Philtrum . Although other gentic conditions present facially too . [/quote]
I know - I was just highlighting that the OP has already said he had the physical features of FASD.

I would mention development delay but not the alcohol part for sure!
My son has severe autism and it was suggested by a teacher that it could be fasd and even though I'm totally and have always been teetotal I felt judged 🤷‍♀️

As a SENCo, if a child presented at school with the typical traits of FASD it would have been picked up on by EYFS staff, especially as they progress through school. Please don’t suggest this to his parents!