AIBU to find it unfair that there are some things that I can't just get the general MN consensus for because

[emkana]

some things are just too big, too heavy, too difficult...

Was reading on this German message board and a woman there with a daughter with achondroplasia (have posted about her before) was writing that her dd will start having limb-lengthening surgery when she is 3 (!) years old, which horrifies me, so young, so much pain for something that is not strictly necessary...

BUT limb-lengthening surgery is something that we will have to think about over the next 10 years or so, it is a possibility and many people with dwarfism do go through with it, while others are strongly opposed to it. There is so much to consider that I can't even begin to go into it now, it's just really really difficutl... sigh

YANBU. Unfortunately you may not even many people on this board who have anything constructive to say, as it is largely populated by mums to kids with ASD and/or speech/communication problems. I know v. little about achondroplasia, but would have thought that 3 was very young for this type of surgery, in that it sounds very young to have a feel for how long her DD's limbs would be without going through the surgery, as would have thought that would be a consideration? Apols if talking rubbish.

Not talking rubbish at all. I fully appreciate that this is not something that I can expect to discuss in detail on MN, and as MN is such an important part of my life (sadly?), it narks me, but in an unspecified way, it's nobody's fault, just life! There is a yahoo group "parents of little people", which is American. On there the overwhelming consensus is that limb-lengthening surgery is a complete no-no. I can really see why people would say that, but on the other hand I don't want to dismiss the option out of hand, if the surgery could mean that ds might achieve a near-normal height...

but I agree, 3 sounds far too young!

emkana, I know it's not the same, but Blu's son is being prepared for a procedure to lengthen one of his legs. She might be a good sounding board? There's info on her blog I think.

Thanks pw, blu and I have "spoken" before about her ds, but I will check out her blog.

Be careful emkana- you need to go with your feelings for ds1. I spend a lot of time on ASD boards. They are 95%of the time helpful, then there's something posted that I'm in total opposite opinion to. The reason? Their kids aren't non-verbal and it makes a difference. they're 'right' for their situation, me for mine.

Took me years to realise that!

Nothing sensible to add just saying hello to emkana! Has DS had his hearing tested yet?

My DD has to have surgery, I don't really want to go into it on here but, one surgery she must have done, but as long as it is done between 2-5 years the surgeon wants me and XP to choose when which I already feel is a huge burden. Then the other surgery is controversial(sp)and it is our decision whether she needs it at all, it is something that causes me serious stress and I agree it is so hard when you can't just discuss it with other mums as its such a specialised subject. I am lucky that there is a brilliant UK based online support group for DD's condition but I still find it hard to discuss it there because people tend to have their(often strong) opinions based on what they did for their child. So I can really empathise, it is something that hangs over me all the time I think it will be a relief to have made some decisions although then I'll start worrying over the surgery itself! It is so hard and sometimes I really envy people who don't have to have all this knowledge but then they also don't have my DD and she is fantastic.

I don't know about German boards but I think there is a tendency on US boards for opinions to become 'ghettoised' in that people have boards just for their own opinion and don't welcome discussion of any other view. I'm not saying we are perfect but is there any UK based group where you could seek views? I agree with riven that looking at adult views post surgery (and post lack of surgery) is a good idea.

I got through the first 8 or so years with dd without online support. I thought it was difficult but I have come to realise that in some ways it's also hard to have access to support. And that's because the insight into other peoples lives isn't always helpful. It makes you question things you thought you we rock solid about - it exposes you to bad stuff as well as good and doesn't always provide you with 'answers'.

Not really making sense here am I?

As regards surgery for your ds - I put dd through ortho surgery (much less invasive than lengthening) and initially I questioned myself as to whether it was to normalise something for her. And in a way there was a degree of that TBH but it was a step she wanted to take. It has also meant she has less pain obviously but oddly I think she felt that was less important. I agree; 3 is too young. You will, I pretty sure, be able to wait until Seb is old enough to have a some input into whether or not he wants this surgery. IMO it's a decision that they need to be fully involved in because a good result depends so much on them being not just compliant but proactive during recovery.

Hi emkana, there was a very, very heated discussion recently on the NDCS board about cochlear implants for profoundly deaf children, seems very similar to the limb lengthening surgery for kids with achondroplasia. I think a lot of deaf kids are being implanted now before they are 2 which does seem very young. It seems it's never an easy decision because there is no inbetween or compromise, you either do it or you don't, if that makes sense. I think it's a very personal decision to take, you will do what you think is best for your ds and within the next 10 years he will be able to tell you what he thinks of it all too.

Huge sympathies, Emkana.

DP and I had to decide when DS was a baby whether we would go for amputation then and let him learn to walk with a prosthetic leg, or wait and start bone-lengthening now.
I didn't have MN then, and I don't remember discussing it all on the STEPS site I use - it is more 'facts and how to deal with things' rather than discussion in tone.

What I DID do, that I have continued to find helpful, is keep a diary for DS, addressed to DS, teling him what we were thinking, how we were making our decisions, and what appointments and consultations we had that informed our thinking.

I write it in a nice book, and i tell him what he's like, what the experts say, etc.

Maybe we will never know whether we make the right decisions for our children, but at least they will know WHY we made the decisions we made.

Our consultant has said she would not start lengthrning until the child was able to understand and co-operate...a 3 year-old will not have any idea of why they would be having a serious, lengthy procedure like that. Bonkers. Quite bonkers. And surely uneccesary fr a 3 year-old.

There will come a time, Emkana, when you can actually talk (in simple terms) to your DS about what he wants. DS at 6, knows the nature of the choice we made, grabbed me and said 'oh thank you Mummy!' when i told him, and is pleased now that his short leg can be made to grow a bit.

You don't need to think about this, now, you can just get on with making sure that your ds has the self-confidence and self-esteem to feel good about himself whichever course you and he decide.

It al seems to become so polarised, doesn't it? With little old you and little young DS in the middle not wanting to 'represent' a political stance at all.

No rights, no wrongs, just the best for your DS.

Thank you all so much, I am close to tears (again) at the warmth and understanding that you lovely lovely women express, I really appreciate your posts so very much.

blu, I'll have to keep reminding myself of your last sentence, reading on the little people group you get the feeling, to some extent, that you're in denial, that you don't love your dwarfism child "fully" if you think about going through with the limb lengthening surgery. I really don't know what we are going to do, but I want to keep an open mind for now.