Marfans syndrome

[AJosh]

Just wondered if there are any parents out there with a child diagnosed with Marfans Syndrome?

Sorry, I don't have a child with Marfan's but I have been diagnosed as having some 'marfinoid characteristics'.

I hope someone comes along to help. I'll watch with interest.

You could try seeing if there is any parent-to-parent support available via the Marfan Association. I was a little concerned that our DD might have Marfan as my DH has a number of characteristics and she has a hole in the heart, but luckily the consultant thought it extremely unlikely. FWIW I think he said an MRI scan is best way of diagnosing, there's something in particular they look out for (but I can't remember what, I'm afraid).

Hi numpty yes he has had an MRI scan on heart last yr and consultant say ok at mo thank goodness because it has to prolapse to 5cm before any meds given, his is at 2.5 and 3.5 two sections of heart affected. I did contact Marfans association when first suspected but all they offered was to go along to their meetings held every now n then down in London which is 2hrs from us, not really very practical I'm afraid due to financial position.It's difficult to try to find a way to cheer him up the whole thing gets him very down in the dumps. I worry what we are to expect once starts secondary school and he will appear so different to his class mates and as we all know children can be very cruel especially in teen yrs. Also many yrs away but i wonder about relationships etc has there's a 50% chance his children will inherit this. There is no cures but I would if possible like to be able to make him feel happier about the whole situation if that's at all possible.

Sorry to hear this.

About the other children-they won't necessarily be cruel. Both my children have hypermobility syndrome and they have not met with any cruelty- in fact, their friends have been most supportive. Dd is now in Yr 9 and has great friends.

The only one who is obsessed with bullying is the paediatric rheumatology consultant who has told both dd and (3 years later) ds that they must on no account use any aids as they are bound to be bullied if their friends find out they have a disability

How about Contact a Family? I work for a disability related charity (long term conditions) and know young people with arthritis; the youngest lad I know (17) has great friends, although they don't truly 'get' how his condition affects him. I know it's a bit different having Marfan (perhaps more outward signs?) but there are famous people who have it too (John Tavener, composer and possibly Abraham Lincoln). I know it's hard to find the positives but I think the best support IS from others living with the condition. I'm surprised Marfan Association don't have any kind of forum online - but perhaps even meeting kids living with other long-term conditions could help? Expert Patient run weekends in England (can't find the website now, but perhaps Contact a Family would know more? for 12-18s). Also perhaps some info here?

Re relationships, pgd already exists even now so will hopefully be even more available/advanced by the time this becomes an issue.

I hope you do find some support for yourself and your DS, it does make so much difference to confidence etc.

Hi yes Cory i'm experiencing a similar problem with my ds new physio she said yesterday at nearly 10yrs old he is old enough to cope and manage his condition by himself,how ridiculous!

Numpty I will check out sites asap, not had much spare time today, you know how it is at times. He's overtired today and thrown one if his moods, oh joy lol.

Thank you both for your help much appreciated.

Poor lad, it must be quite hard for him.

The most irritating comment we have clocked up to date is that of the rheum who said dd must never be allowed to think of herself as disabled. -Errr, you don't think she might just notice as she is crawling on her hands and knees along the pavement?

The next time, I left the wheelchair out of view and let dd crawl in. He got the message.

my friend has Marfan's syndrome. she's a primary school teacher now, with a liking for red wine.

Another thought: ime most secondaries are far more geared up to dealing with disability than most junior schools (the medical and mental health professionals I have spoken to agree with this).

Also, it is an age where boys stop just being little boys running around and screaming and start developing different interests, so that too can make it easier for a disabled boy.

Hi everyone. Thanks for all your comments so nice to be able to talk about all this with people who are experiencing similar things.

I'm hoping secondary school will be better as like cory said they do get past that age of just running around and develop other interests.

I suppose I think too far ahead at times but all scenarios run through your mind at times, also maybe I make the mistake in comparing my school days to now, hopefully children are better educated and less cruel, I hope!

I worry about his future because it does limit him considering everytime he mentions what he wants to do when he grows up I think to myself oh dear mate I don't somehow think that will be possible. For example armed forces, policeman, stuntman have been mentioned. I know he will never have the physical strength to do any of those, so i suppose I worry how he's going to feel if the situation arises when he applies for anything along those lines and gets told sorry son but no it's not possible, I try and be positive thinking well there's plenty of other jobs but we all know if we set our heart on something and then reality hits home how upsetting is it going to be for him?

Also we have the boyfriend girlfriend scenario to deal with yet, I think to myself be gentle with him let him down nicely because as I've said before kids can be cruel and not think of others feelings, I dread the day a girl may say something nasty or tease or take the mickey as it's bad enough to a normal person to experience all this let alone someone with a disability that's also very sensitive bless him, he takes things to heart. I'm probably worrying for nothing and all will be fine but as a parent you worry.

My experience has certainly been both that children are less cruel and that schools are far stricter about bullying these days. Once there was an incident at dd's school: a girl she didn't know very well shouted out in the corridor 'you don't need a wheelchair, you're just putting it on'. Dd spoke to the head of year and the head of year dealt with the bully until she was thoroughly contrite. Never happened again.

About careers, yes I know what you mean. Ds' only interest is football and that one is certainly not going to happen. I hope he will grow out of it naturally - most children have impossible dreams and most children grow out of them without too much pain.

Girlfriends and boyfriends- well, they might find somebody really nice. Or to look at it another way, anybody who is nasty enough to use a disability against them, you would hope they would dump as quickly as possible anyway, because that kind of person is not going to be any good to anyone.

There are parents with dc with Marfans on the special needs threads, including ones titled marfans, and the eds hypermobility thread, I don't know if that helps, you have had some lovely support and advice here already. As an aside I know my ds is younger, only 7, but his peers are lovely and supportive and protective about his disabilities.
There are also medical counselling services available through the NHS for children and younjg people with medical conditions, that could help, you can ask your gp for a referral.

Hi Cory and Sparkle thank you both.
Yes I see your point Cory I must admit his friends seem ok at the moment we've only had a couple of incidents of teasing which he did find very upsetting but I spoke to the boys mother and it hasn't happened again.
And yes you're right if someone can be so nasty and judgemental of someones disability and not see past that at the person then he is better off without them, but as we all know as mature adults he may really take a shine to someone but them not to him and then thats where the heartache begins. I think it's best somehow if I can get some counselling for him and hopefully prepare him and boost his self esteem.
Found you on special needs thread Sparkle I've just replied to you, thanks.xx

Hi,

I don't have Marfans but my brother does. He is one of the 25% where is is totally spontaneous, no genetic link at all.

I thought I would say a quick hello because it's so unusual to see it mentioned to be honest.

My bro is tall, 6ft 1in, which is tall considering my Mum is 4ft 11 and my Dad is 5ft 7. He hasn't found his height much of a problem, a bit difficult getting size 13 shoes mind you but he manages.

He goes to Royal Brompton to have scans on his heart every year. It is likely that eventually he will need an op but luckily so far he hasn't needed to.

His eyesight is poor but he refuses to use his stick as he doesn't consider he needs to. Certainly didn't stop him getting his First from uni either (proud sister).

He works part time and travels to and from work himself.

Just wanted to say hi anyway and hope it all goes well.

Take care.

Hi Abubu lovely to hear from you. Your brother sounds as if he's doing amazingly well bless him, good for him getting a first at uni, no wonder you're proud :o

We think my ds is one of the spontaneous ones but hard to say for sure as we have no contact and know very little about my ex husbands family.

Hope all continues going well for your brother.

Take care.

What a lovely message

hi I have Mfs diagnosed with a genetics test this yr although i've known for yrs. Have 2 kids. One is the shortest in his yr group and just like his dad. The youngest 4, is the tallest in her class (More like a 6/7 r old than a 4 yr old) and is just like me. They'll both be tested, when I get round to it, but already know she's the one with it. Try not to dwell on it at all. All three of us have heart checks every yr, Me every 6 months now... Mustn't have any more kids, but at 40 yrs and one of each that's no problem. Was given extra care during labour. All I wanted to say was find ways to improve your sons muscle/strengthtin any way he can, maybe by swimming, walking more and not worry about school sports. Being a syndrome it can affect people in different ways, and may not bar him from a long and fruitful life and career. I work full time as a teacher, just try to take the tablets every day and get on with life kids and ironing! Happy to answer any q you might have but I'm by no means an expert!