Could this be some sort of known syndrome?

[ThePinkPussycat]

I have a good friend who I met 24 years ago at ante-natal class. She has a DS(nearly 13) who was diagnosed at junior school with developmental delay, and transferred to special school where he is doing well. He is happy, reads well, but is and has always been v small for his age. This has meant his DM hasn't treated him as the age he is, which hasn't really helped him. I have AS and ADD myself, he and I get on well, as we both like trains etc, and his thought patterns seem similar to my own (and different from his mother). His attention span when younger was v short, and he is hyperactive, both these aspects have improved as he got older.

He is now at the age where he is distressed that people do not believe him when he tells them his age, and he gets called a midget, or a dwarf. His body is indeed that of an 8 year old, with quite thin arms and legs. It's in proportion though.

He is staying with me atm for a couple of days, and confided in me how upset he is about this. I am going to suggest to his DM that he should see the GP (I am afraid I frightened him talking about this, as I mentioned blood tests - obv I didn't mean to ). I don't think it has even occurred to her that this might be needed. She is lovely, but I think also has ADD and didn't have a very good start in life.

I have been wondering if perhaps he might have some genetic disorder, or perhaps is lacking growth hormone. Anyway, I thought someone here might be able to shed some light on some possibles.

Hope I don't sound like a horribly controlling friend. I just want the best for everyone concerned.

Btw her DS(23) went on to uni, as did mine. She has parented alone for most of the time.

Honestly, I think you should let the specialists worry about "shedding some light on some possibles." Looking up possibilities on the internet will only serve to terrify both he and his mum.

If you want the best for them, simply let her know her son is upset over this issue and encourage her to go to GP. Then back out quietly, although remaining there for support, of the equation and let the medical professionals worry about if there is a "syndrome" involved.

I don't mean to be short with you, but it just seems like lately there have been quite a few posters on MN who are determined to override others' parenting and dx someone else's child with a problem that may or may not exist. I can't imagine the amount of pressure that must put on the child's parent.

I understand where you are coming from, although I did try to head people off at the pass in my first post, so to speak :) I spoke to her earlier today when dropping him back home, told her what he had told me, and she asked me if I would go with them to the GP. I knew he had also mentioned it to her, she says he has been asking when his voice will go deep. In fact, I did say did I seem interfering, she reassured me that she listens to me, and welcomes input (as I do from her). And she knows her own mind, when she has considered all her options.

As you see, I have a syndrome myself...

We are both intelligent women, and know that possibilites are just that - possibilites. I asked here in case someone recognised a known genetic problem, or a problem with growth hormone or anything.

No that's all well and good that you've spoken to her about it. I'm simply saying that you have to be clear in your head where to draw the line between encouragement to seek further information and interfering, IYSWIM.

I am always a bit when people bring this type of thing to the board, as I would be livid if someone I knew went on a forum and was discussing my child.

As you can see Pink, it's a very delicate area indeed considering if someone else's child may need a diagnosis (or in this case further diagnosis), and personally I wouldn't have the faintest idea whether there is any medical reason that your friend's boy is small, so wouldn't be prepared to speculate. Bear in mind that to have been diagnosed with developmental delay and given a place at special school he will have been seen by paediatricians, ed psych at the very least, so hopefully anything obvious would have been considered, tested for and ruled out earlier on in this lad's life.

One thing tho you should bear in mind is that if this lad is still developmentally delayed to a degree, it is understandable and perfectly reasonable that your friend treats him as younger than his chronological age, if in terms of social skills/street smarts that seems most appropriate.

Well, instead of googling I thought I would ask on MN where I have had very good help before. I wasn't asking for advice on how to conduct my life - I would have posted a rather different post if so.

I was just asking for some factual information, supplying the information that I could, from people who I thought were most likely to know.

I was not aware that before anyone would supply such information I would have to produce a CV of my friendship with someone I've known over more than 2 decades.

TLP I have taken all that into account, honest I have. The friend assumes he can't do all sorts of things that, when he stays with me, he can. AFAIK he has only seen an Ed psych 7 years ago.

Imagine I'm just writing an essay or an exam question, instead of sincerely asking for information. What could this be? what might the Dr do.

Btw my own diagnosis is fairly recent, before that I was wrongly diagnosed with mh needs, not AS.

I'm sorry that my reply and others have upset you. I genuinely do think that the people replying on here would not have enough experience of genetic conditions to make a sensible suggestion, even if someone had posted here saying it was their own child they were worried about with the same set of facts, noone could have said - yes, it could be "insert name" rare genegic condition.

Yeah, I get that, TLP, except they could have said it might be x, y, z, but not a, b, or c. Or just sorry we don't think we can help. Was just trying to narrow down the possibilites, not get an internet diagnosis. As people will have read, I had done all the things suggested in the 1st reply, before Triggles had even posted it.

Anyway, thanks for everyone's replies. I know we are all after the best outcomes for those we love :)

love, peace,

btw I don't think you did anything at all wrong in suggesting that the lad visit the GP to discuss his height, and to expect a blood test, as blood tests are the bogstandard first stage investigation. I imagine that a GP probably would refer on to a hospital rather than go into the ins and outs of any genetic conditions, as when I have heard of people whose kids got diagnosed with genetic problems it tends to be a lengthy process involving specialists.

I apologise if I seemed patronising in my post, I think many parents to kids with SN have had bad experiences from others (friends/family, sometimes even professionals judging them) that a suggestion of babying sets people off being defensive.

And there it is. The suggestion that you can parent this child better than the parent or that you know better what is best for this child. YOU may not think that's what you're saying... but that's EXACTLY what it sounds like. You are not this child's parent.

Not sure why you felt the need to point this out. I was simply reiterating what you said about mentioning it to the parent, then telling you it would then be appropriate for you to step back.

Honestly, this just smacks of "I know better than the parent" and I have literally had my fill of this on MN recently. There has been a flurry of posts like this lately.

Sorry Triggles I really didn't mean to offend. I am only me, not all those other posters

pinkpussycat. I would have a quiet word with your DF regarding her DS as he may well have a condition which could be helped with growth hormones and enable him to reach a height more acceptable to him. The time frame for this therapy is limited. Talking directly to the boy may not have been the best way forward as it may have scared him, but at least he felt comfortable enough to confide in you. Be careful not to betray his confidence but I think you are doing this with the best of intentions. There are more genetic conditions than you can shake a stick at so asking for a diagnosis here was not wise, even geneticists are often

Yebbut how could I know what I didn't know

Yes, I've already done that sneeze, and I was also thinking that there could probably be a limited time frame for treatment. I guess when he was younger the health care professionals wouldn't have been able to predict this aspect of things, thinking it was 'just' developmental delay.

Anyway once again to all.

I only mentioned the lone parenting as a way of saying his F was not on the scene, really. Yes I've told friend, she asked me to go with them to the GP.

I think it would have been more tactful to just listen to the lads worries or concerns rather than indepth talk of blood tests. Perhaps saying to the lad to talk it over with his mum as she would know what to do for the best. Then perhaps tell the mum what the lad had told you and left it to the mum to sort it if she wished :)

Incidently my DH (NT) was a tiny lad right through school till he hit 17 and shot up to a 5ft 9". He still has only size 7 feet lol but he used to get a lot of ribbing about being small. My DD is the same very tiny frame and height. She is 11 and can still fit into 6yr old tops and shorts etc. It may not necessarily be anything serious is what I am saying so best not worry the lad over it. :)

My DB had a similar delay to your DH coff, and I did tell friend's DS this. I can't remember the details of how the convo got onto blood tests, but it sort of arose 'naturally'. I don't wish to do special pleading, but I can perhaps be too honest/direct sometimes, especially if asked a question straight out. (Case in point - I included in my OP the fact that blood tests were mentioned - should I have left this out?) He was fine today, however I have told friend what I said and she will reassure him if it turns out to be preying on his mind

ThePinkPussycat I do think that you should not be looking up or searching for what type of thing might cause him to be smaller in stature though. The reason I say it is this... once you get some information on possibilities, what are you going to do with it? If "pass it along to the son or mum" is the answer, then you are opening up a can of worms. Again, it may seem the most logical thing to you, but you are not a doctor (or more specifically you are not HIS doctor), and you would be overstepping the line.

AS or not, it needs to be clear that there is a line there, and you need to stay on your side of it. I do think in discussing with the son possible blood tests or even that there may be a possible "condition or syndrome" involved is actually crossing the line - as it may imply to him that there is "something wrong" with him, IYSWIM. I agree with coff33pot that it probably would have been better to listen to his concerns, and then encourage him to speak to his mum about it so that she could take it from there.

I do agree that the lone parenting comment was not needed as, combined with your comment that he can do things with you that he is not allowed to with his mum, you also give the distinct impression that you are criticising her parenting, which to be fair is a real hot button with some of us here (and obviously me).

What am I going to do with any info I find? Nothing, except know it and worry less. I didn't say there might be a syndrome to friend's son, he told me his worries and I said maybe the doctor might be able to help. He had already spoken of it to both of us many times, but it hadn't occured to her he might need to be seen by doctors.

What is wrong with saying someone is a LP? There is no shame in it! I also tried to imply she'd done well as her DS1 had gone to uni.

She criticises me, I criticise her, we are close friends. We both prefer that each tells it as we see it . I am all too aware that in 3 years time he will be found capable of work (and he will be, with right job and self-confidence). I tried to show that my opinion was evidence based, is all. To give one example: he has been taught to chop veg in school cookery classes, and did so when here with me (in fact his technique is better than mine) yet until I told her he had done it, she would not let him chop veg at home. She does now!

Sadly, I am used to accidentally pressing people's hot buttons, and the other way round. And apologising I do take boundaries etc v seriously, you will have to trust me when I say I agree with your take on this, but that I cannot write a huge screed (nor should I) explaining and justifying my stance. I am happy with it, friend is happy with it. I just wrote my post as it came, rather than spending a long time tweaking until I thought it couldn't press hot buttons. As my DF has AS, I spent my childhood checking what I was going to say so it couldn't be misunderstood - and it often still was misunderstood!

Tell her what her son has said then back off. Doing just that is being a good friend, any more is stepping over the line.

For all you know he's already diagnosed. Not everyone feels the need to share confidential medical info with all "interested parties", I know I don't as I feel my son's entitled to a bit of privacy. You admit grudgingly she's done a good job with her eldest and that she's an intelligent woman.

I saw one too man armchair experts trying to "advise" my parents about my sibling. It caused considerable distress, yet they wisely trod their own path and she wound up doing incredibly well in life because of, not despite their efforts. Now I endure it with my own child who has a totally different SEN.

Friendships just don't survive back seat parenting in many cases.

bochead read my follow up posts. You will have to take my word for it that nothing I said about my friend was admitted grudgingly.

Have started to have a little read of other threads. What a difference from my own childhood (am nearly 60) when AS was almost completely unknown, and I and my family struggled on with no idea what was 'wrong' except that life was difficult and I was a bit weird

And DF was v weird