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

From previous threads it seems they will only get a diagnosis’s of FASD if it was documented and know durning pregnancy that there was drinking. It was a foster carer who had 3 children that it was suspected but only 1 had the “right” paperwork and the label and support that went along.

Probable far more general to ask how they are getting on with various things and offer support that way. If it is obvious as you say school or someone will pick up signs something is amiss and hopefully be supporting.

My BIL’s daughter with my ex-SIL shows all the signs of FASD. Physical appearance, developmental delays. Would be textbook. I’ve briefly mentioned it to MIL but it’s really not my place to intervene when there are other professionals who would be well placed to notice.

I would venture general development concerns and avenues of investigation.

The difficulty with FASD is that it implies a level of blame as it is directly linked to maternal behaviour. SNs can be sensitive even when there is no behavioural cause as so many are still often misunderstood. Plus where children are in their family, many are not well placed to recognise, and manage such issues in a minefield of support and provision anyway.

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

I'd say that if you are not close enough to have said something already then you should keep out of it. Quite apart from the fact that 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.

There are quite a few FASD signs that could also be attributed to other things. I would tread carefully tbh, my youngest ticks most of the fasd markers only I am tea total, he has SPD and ADHD thou. Perhaps ask if they have noticed anything going forward with his development, at least it's non judgmental rather than accusatory?

^The term FASDs is not meant for use as a clinical diagnosis.

Diagnosing FASDs can be hard because there is no medical test, like a blood test, for these conditions. And other disorders, such as ADHD (attention-deficit/hyperactivity disorder) and Williams syndrome, have some symptoms like FAS.

To diagnose FASDs, doctors look for:

Prenatal alcohol exposure; although confirmation is not required to make a diagnosis

Central nervous system problems (e.g., small head size, problems with attention and hyperactivity, poor coordination)

Lower-than-average height, weight, or both

Abnormal facial features (e.g., smooth ridge between nose and upper lip)"

I have to say FASD was a strange first leap to unless you know for sure she was drinking heavily. There's a lot of potential causes and if its as severe as you say school will be on the case.

@GloGirl

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

You are incorrect, the GP will not speak to anyone about the child without consent of those who hold parental responsibility.

The person you need to discuss this with is your husband.

You’re a paediatrician; if his parents or grandparents were concerned enough about developmental delays/issues with eating etc they would be talking to you themselves without you needing to go to them.

Being in laws means there is a barrier there. It’s your husband that your need to talk to for a way forward. If he is the one to say something they may come to you for a chat of their own accord so that you can signpost appropriately.

@Cresssandwich

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

Well said.

For everyone thinking if there was any concern school would have picked it up, most really don't.
Some schools are amazing and would notice all sorts of differences and talk to parents and recommend referrals to professionals, some may or may not notice anything but if the child is academically not too far behind would ignore and others are frankly useless.

It's the very disruptive and/or aggressive children whose behaviour is noticeable, not the quiet compliant ones.

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!)

Why would you feel the need to point how different you are?

Very much a ‘party girl’ prior to accidentally falling pregnant, and even since having DN, still enjoys going out clubbing with friends (pre- Covid, obviously

Mums are allowed to drink and go clubbing you know this isn’t the 1950’s. This isn’t an indication she drank during pregnancy.

@ghostyslovesheets an FAS expert told you that one drink can cause the syndrome? They were clearly not an expert as I refuse to believe anyone involved in this area would ever state that. It’s just bollocks. In fact it’s almost the opposite, only 30% of alcoholics who drink throughout have babies born with FASD. It’s not something you give your child through a celebratory glass of Prosecco at some point so stop scaring people.

I would not mention this to the parents,if they have shown no outward worry about this child. I can understand your concern though, as in being aware of this condition,and perhaps the child's parents are not.

@ghostyslovesheets an FAS expert told you that one drink can cause the syndrome no and at no point did I say they did

I'm not 'scaring people' you seem very cross! FASD is hard to diagnose and often the evidence is difficult to gather, none existent or based on what people tell Dr's - I would like to see evidence that the odd drink is harmless?

I wouldn't bother. I've been trying to explain to my DB for 14 years that his child has autistic traits (which he absolutely does) but they are in complete denial. It frustrates me as identifying the issue would help him. Everybody sees it - even those that don't know him that well but they just won't have it. I think the school tried to hint (I don't think they are allowed to be explicit) but they got the arse and ignored it and it wasn't mentioned again. I really wouldn't bother and I definitely wouldn't mention what you think it is

The parents know he is struggling. The mother knows whether or not she drank excessively during pregnancy. No one is stupid enough to ignore the warnings given during pregnancy unless they have a problem with alcohol. This syndrome isn't caused by a few glasses of wine during the pregnancy, its a serious addicted drinking habit. The mum will know if its true or not.

By making an accusation (because that is what it is) you could cause all kinds of upset if there was no drinking involved. If the child is struggling and needing extra help this will be picked up anyway in school, and then the experts can put processes in place to help him. There is no treatment that can help so what needs doing in terms of his assisted learning, will be done. His parents will know he is having problems, and it is for them to deal with.

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

While this is true, there is no proof either way of any harm or not that light or moderate drinking may cause, FASD is a different beast, or there’d be an entire generation of children born in the early part of the 20th century with it as Guinness or Stout was often prescribed in pregnancy.

From my developmental biology days, it would be highly unusual to see FASD in a child who’s mother didn’t drink significant amounts of alcohol throughout her pregnancy. A beer a day wouldn’t do it (as evidenced by women being prescribed this).

Please don't suggest a diagnosis. There are loads of conditions that can present with similar signs and unless you are a medical specialist you have no right to suggest such a diagnosis. By all means suggest the parents approach their gp for a referral to a paediatrician to discuss concerns about behaviour, learning of physical issues.

...or physical issues

My ds has a number of diagnosed disabilities including ASD and ADHD. It has been a very long road to get him diagnosed and very qualified paediatricians and psychologists have reached the wrong conclusions on that road, and later been corrected. He would also meet criteria for FASD. I didn't drink alcohol at all during my pregnancy. I also didnt drink for 12 months before my pregnancy as I had IVF. He was a much wanted and cherish baby. The first specialist we saw said he had attachment disorder and blamed my early parenting, the second said he had hearing problems. 5 years later we now have a range of diagnoses. Sorry but you may be textbook qualified but observable conditions can and are frequently missed and misdiagnosed. Your DN could have any number of issues. Have you heard of Ehlers Danos Syndrome... yep no neither had we but my.Dp has just been diagnosed after a lifetime of issues that no one could pinpoint
You would really be better not assuming a complex diagnosis with no evidence and work on supporting them to tackle the day to day challenges.
And yes people 'with problems' do often have SEN kids... that will be because ASD and ADHD are thought to be genetic and frequently run in families. If you are a parent with undiagnosed and unsupported SEN then life is going to be hard and parenting could be hard too. Perhaps if we supported neurodiverse people better as children we could prevent this being the case.

He doesn’t know your name and it feels a bit unnatural to just say “you dropped your card.” I do understand what your saying but in his mind adding the “darlin” probably was because it sounds blunt and unfriendly otherwise

Sorry somehow that posted to the wrong thread! But OP I understand your dilemma. This kind of thing would bother me

@curtainsforyou2 what great insight you have, found your reply really interesting, hope the OP read this

Does he have the facial features?