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

Can you go with a "how is Danny doing? How's his eating coming along? Have the GP been any use during lockdown? Oh you've not spoken to them recently, so you think it might be worth asking them for a referral to OT, dieticians etc

My dc has FASD and I am in a support group so I am very aware of how it presents
In my experience birth children rarely get diagnosed, it's a hard diagnosis to get anyway and there isn't a service for it, unless the mother admits to drinking or is a known alcoholic. Even then they often get diagnosed with ASD instead. My neighbour is a heavy drinker. I swear some of her kids have FASD but all are diagnosed ASD. She will swear blind to anyone that she doesn't drink
The diagnosis offers nothing and comes with a lot of blame and stigma so it's pretty useless

I have 2 family members with FASD and it's not an exaggeration to say it hss completely blighted their lives. I've spoken to a number of people who have family members with it and outcomes are absolutely dreadful. I would think that early specialist intervention would be needed.

For your wider family due to your professional knowledge I would use terms like "not at expected levels" "developmentally behind" and possibly ask school if you can speak to the SENCO and privately voice concerns about FAS.

If you know which GP surgery they are registered with could you contact them also.

God how difficult. A friend introduced his girlfriend to his best friend. The girlfriend was complaining of certain symptoms then went to loo. The friend (a GP) told my friend his girlfriend had MS 🙁. Very difficult situation. He was right she did have it.

Thank you for sharing your experience Two Breaking - it’s a helpful insight to know how it might feel to be on the other side.

There is an excellent downloadable booklet with ideas on why certain behaviours are present and how to tackle them for anyone interested:

edmontonfetalalcoholnetwork.org/resources/strategies-not-solutions/?amp

Thank you to everyone for taking time to post. It’s really helping me think this through. I might be a paediatrician by profession, but to these people, I am just an IL. It’s a tricky path to navigate.

If you are a paediatrician, you are qualified to have an opinion.
The nephew is your DH's brother or sister's child, and maybe if you discuss it with your DH, he could suggest to his sibling and sibling-in-law to ask for your professional opinion.

I would see if they ask and give general advice about referral etc, surely if he starts nursery / school they would pick up problems then and speak to the parents.

You'd do a lot better to push for them to get a diagnosis and support for him. I'm not sure sharing your suspicions will do any good, but surely if it's as obvious as you say it will be picked up quickly.

I would ask what the benefit is in having this diagnosis? Often times labels (especially for mental illness or developmental conditions) are very stigmatising but don’t actually provide any help for the child that they wouldn’t get from simply presenting with their symptoms. Surprised you haven’t encountered a situation like this before as a paediatrician and are on mumsnet asking... surely your peers or GMA advice would be more useful

@Sometimeswinning

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

Are you also an expert???

No not at all - I just did some training delivered by a FASD expert last week and work with looked after children - many of whom do have FASD or display symptoms

I'm happy to be corrected but I thought there was no 'safe level' of drinking in pregnancy as there is not enough evidence to suggest otherwise

I’m not sure if you know how drs work, but assessing/diagnosing family members is not appropriate. In this case, I’m concerned that no one at school appears to have flagged this and the child (a family member) is struggling. I’m sure you can appreciate the sensitivity of attempting to raise this potential with a family member - and not even my family, but my DHs.

I think like any professional with specific knowledge you should not offer a professional opinion in a social situation unless you are directly asked.
Maybe you could in a roundabout way (as a concerned family member) mention seeking support for help with the eating issues and milestone delays.
It could potentially be detrimental if you mentioned FASD, the fear of a judgemental reaction could put off help being sought for DN. They key is getting help for DN, not attributing the cause of the problem.

It actually really concerns me how a child looks is being used as a diagnostic tool, and with any condition that has visual characteristics it is really important that the ‘look’ of a child is not over emphasised.
A friend of mine was discussing another friend’s child saying ‘he doesn’t look particularly Down’s’ so hopefully he will be able to attend the local school’. Horrific.

@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 - I would broach it but it's so tough because (as the responses show) it's seen as blaming the mum

I think this is kind of a fudge - yes, they can't set a hard line, but actually there is no evidence that having a drink will cause FASD, either, and there is a lot to suggest it's a pretty unlikely scenario.

That's mostly something used to scare mums, and if the OP says anything it will be clear to everyone she means the mother was drinking much more heavily than just one drink or typical social drinking with meals.

Which may well be true, but not likely to have a good outcome, I suspect, if the OP says it. I'd tend to recommend they have good cause to look for specialist help and investigation. It would be much better if the specialists were the ones to suggest FAS is a possibility.

Thank you - it’s certainly not just the facial phenotypes that I am basing this on. I’ve held this suspicion for many years, and the evidence in terms of the trajectory of his development is mounting.

I agree though - it needs to be someone independent that ultimately raises the potential of DN presenting on the FAS spectrum. What I might be able to do though, is encourage them to seek a developmental assessment. Thank you.

I wouldn't mention it. I suspect his DM has a feeling she is behind his issues.

I'm surprised school hasn't noticed him struggling and requested an assessment of need for him.

@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.

Can you suggest in a professional context that you are wondering if he might benefit from a genetics referral. They should have FASD on their radar immediately and then you don't actually have to go there

@PrincessPopple

What I do know for sure is that she drank and smoked cannabis during her first pregnancy. (We honestly could not be more different as people!)

@PrincessPopple how do you know for certain? How do you know she was drinking for certain for DC2? Is it enough, do you think, for LA to become involved? Be careful, agree with others re a rift you’ll be told to wind your neck in. This is your professional life tho so I do get it.....try to be more boundaried

Not having a go, but to me it’s clear you are judging DN. Arguably rightly so, many would agree with you - I’m not saying it is OK she MIGHT have drank/smoked through pregnancy as it certainly is problematic if true.
I just get the impression you don’t like the woman and wish to condemn her from a judgmental place, rather than report for the greater good of the DC’s.

Again - Not wanting to tear into you OP, I wish to stay away from the vitriol towards others which is seen in the posts here. I don’t know you obviously but these were my thoughts

Is the behaviour not troubling the parents and school enough to investigate themselves? If not suggest it next time they mention the behaviours.

I was pushing for help with my eldest for years before diagnosis with ADHD, then ASD a few year after that. Sadly many professionals aren’t that switched on to these issues, or even don’t think they exist or need diagnosis and treatment. While FASD is even less widely known about.

As in suggest they go to the GP, not the diagnosis. It’s too personal, upsetting and stigmatised.

Can I also add that even if you turn out to be right it might not be very well received. It might be viewed as a criticism of their child, or there may be guilt that you noticed before them... all sorts of ways this could go wrong really.

You seem to be aware how carefully you need to tread though. Good luck, I hope that the lad gets any support he may need, however you decide to proceed.