Marfan Syndrome

VfM4meplse

Jojo_the_Tightfisted wrote: »

Ex 2 had the advantage of not being ex 1.

:rotfl::rotfl::rotfl:2 men = double the faults

CFC

Jojo_the_Tightfisted wrote: »

I do hope that you meant potentially life limiting, Jen, as I'm not quite ready for that bombshell, myself , but, tbh, it would have been a lot more likely to be life limiting if I had obeyed him and not sought medical treatment for her.

I'm sorry, but I really don't get why you say 'if I had obeyed him'....you slept with what sounds like a possessive jealous nutter, bad mistake, but why on earth does the word 'obey' even cross your mind as one of any potential options in a relationship? Same as in your first post when you say 'his orders have been quietly ignored'. This from a guy who isn't married to you and has no parental responsibilities? He's giving orders and you quietly ignore them?

I'm perplexed and a little disturbed.

Jojo_the_Tightfisted

CFC wrote: »

I'm sorry, but I really don't get why you say 'if I had obeyed him'....you slept with what sounds like a possessive jealous nutter, bad mistake, but why on earth does the word 'obey' even cross your mind as one of any potential options in a relationship? I'm perplexed and a little disturbed.

Well, he wasn't, originally. He was a lovely fiance and everything was great.

One day it all changed. And, unfortunately for him, once he started ordering me around, I didn't react too well to it.

I don't suppose he had ever had someone give him straight back what he dished out before. And it had certainly never been dished out to me or DD, so I had never been browbeaten or confused enough to believe it was normal behaviour from him.

So it escalated rapidly over the course of a few days with him upping the stakes every time I refused to do something he told me to do, until I found myself dangling 12 inches off the floor by my throat, snarling at him that if he thought he was going to get through me to thrash a child weighing less than his coat, he had better have his balls insured before he had another go at it.

I didn't report it because I, rightly or wrongly, decided it was probably part of the reaction to the possibility of Marfans and, as he moved out, it wasn't as though DD was actually in danger anymore once I took the doorkeys from his hand and slammed the front door on him for the last time.

After a few nasty skirmishes over the following months, one which ended up with him outside my front door in a heap, it got into his head that I'm probably the only person on the planet that won't stand for that nonsense and he started behaving like a relatively civilised human being again.


Just one that won't provide a shred of help where DD's health is concerned.


Yep, I made excuses for him, but he still sees DD regularly after all these years, doesn't behave aggressively towards her or me, and I'm not going to try and change him. Him losing the plot with me is separate to him being a father. He's not my responsibility, my problem or really, my concern.



DD is my responsibility.



Sorry if that's too much information, but you asked. The short version is he wasn't like that, then he was, I didn't put up with it, he went, since then he's been less than helpful. He is however, for better or worse, DD's father and sometimes it is better to not cause havoc for the fun of telling him he isn't in control. Ignoring him quietly is far more practical than telling him his orders mean nothing to me. Actions speaking louder than words, as it were.


Hope that clarifies that you don't need to worry about my choice of words. Obeying isn't really in my vocabulary, other than in the context of not doing it .

alieshia

your daughter may have health problems but she is very lucky to have such a strong mother to look after her. I'm not sure I could be as strong.

Jojo_the_Tightfisted

alieshia wrote: »

your daughter may have health problems but she is very lucky to have such a strong mother to look after her. I'm not sure I could be as strong.

I would say more bloody minded and lacking in common sense, myself


I grew up with big brothers and attended really, really rough schools; anyone with half an ounce of brain power would have realised how much bigger he was and backed down, calling the police later. I went into the old school 'give-it-all-you've-got-and-you-might-just-take-one-of-them-with-you-as-you-go-down' approach. Could have got me killed. I was lucky it didn't.


But thanks, anyway

tom9980

I can see why your not fond of the ex but i would suggest you pack those feelings in a small box and stack it in the back of a cupboard somewhere, they are a negative drain on you that you really dont need.

Hope she doesn't have marfans, i was tested for it about 15 years ago and thankfully negative, its not a nice condition to have!

WhiteHorse

Jojo_the_Tightfisted wrote: »

However, as he refuses to have a part in this - to the extent of stating he would call social services and report me for having Munchausen's By Proxy if I took ever her to the doctor's ...

Actually, this is a real possibility. Once the busybodies at social services get hold of it, it could turn very nasty.

... if he accepts the possibility of DD having this, it makes it real and has to accept he is not perfect in every way. He doesn't believe in illness, full stop, anyway - a physical illness is proof someone is lazy and only interested in being a victim, apparently. So I can see that something so serious really contradicts his moral schema. Although I would quite cheerfully beat it into his head with a baseball bat, I can't see him putting the welfare of his daughter above his need to remain perfect in his own world.

... he has said she isn't allowed to have a brace for scoliosis, as no child of his was going to ever look like a cripple, so she'll just have to get used to being in constant pain, as at least she'll look normal.

A perfect example of a macho moron.

Fortunately, someone who outright refused parental responsibility when it was freely offered doesn't tend to have many rights to influence/prevent medical treatment, so his orders have been quietly ignored on every occasion.

For your daughters sake, perhaps you should consider carrying it through and getting rid of him completely.

Jojo_the_Tightfisted

tom9980 wrote: »

I can see why your not fond of the ex but i would suggest you pack those feelings in a small box and stack it in the back of a cupboard somewhere, they are a negative drain on you that you really dont need.

Yup. The little stacked box is right here on MSE! Every so often, like just before dawn, it creeps open a bit. Then it's shut up tight again, and I get on with smiling and making him a cup of coffee as he waits for DD to get in from school.


She doesn't see that side - well not the precise details, she knows he screams and shouts a lot at people, and that I don't put up with it, but she doesn't know a single bit about the stuff that led up to him going. And never will.

He is her father. He hasn't walked away and erased her from his life. He can be a civilised human being at times. Especially when he is met eye to eye (figuratively, I'd have to stand on a stepladder to actually do that) and told that he is not superior. We are equals. (Needless to say, his OH is a meek and mild little thing ).


He is just absolutely no help whatsoever when it comes to DD's health.



****

I'm not actually worried about the Munchausens by Proxy stuff. DD has

Scoliosis/kyphosis
Pectus excavatum
Arm span longer than her height
Ankle problems
Hypermobility
High palate
Crowded teeth
Long limbs
Long fingers and toes
Height on 75th centile/weight under 50th

All stuff that can't be faked. And all giving good reason to investigate further, even before the family history gets added in.


Meh, it would be really helpful if he could get over his fears and be there for her as well. But he's not going to, so there's no use worrying about it.



I just want to make sure I haven't missed a symptom, a sign, anything that also needs to be checked out.

needing-help

I just wanted to say that I think you are amazing:A

We have recently gone from me being told I am an over protective mother to being told DD is severely hypermobile in all joints and why wasnt anything done before.

The last consultant we saw believes there is a lot more going on, he wants to do DNA and genetic testing as he believes its either marfans or eds and I have fallen to pieces a bit:( I'm not sure where to turn because no one I know has heard of either.

Sorry for hijacking your thread and I really hope everything gets sorted out for you and dd.

Jojo_the_Tightfisted

needing-help wrote: »

I just wanted to say that I think you are amazing:A

We have recently gone from me being told I am an over protective mother to being told DD is severely hypermobile in all joints and why wasnt anything done before.

The last consultant we saw believes there is a lot more going on, he wants to do DNA and genetic testing as he believes its either marfans or eds and I have fallen to pieces a bit:( I'm not sure where to turn because no one I know has heard of either.

Sorry for hijacking your thread and I really hope everything gets sorted out for you and dd.

Thank you.

If it's any help, my copious amounts of reading have got me able to say that the testing can help establish whether DD has;

EDS. The impact of this varies. It can be essentially benign, but something you have to get the hang of dealing with. Some people have it worse, but most manage the condition quite well, but with some help/adaptations. For me, it's a flaming nuisance, but I'm OK. And a dab hand at putting dislocated joints back where they should be before the swelling makes it a general anaesthetic procedure. A lot of the things noted in Marfans (scoliosis, chest deformities, hypermobility, etc) also show up in EDS.


Marfanoid habitus. Means they're long and skinny and look like a model when they grow up. Might need braces, will have to be careful of joints and other things that crop up, but altogether not too bad.


Marfan Syndrome. Can be mildly affected, or severely affected.

Can affect the eyes (hence ophthalmology visits), the back (physio/possible bracing for scoliosis), the feet (orthotics for the shoes), the teeth (braces), the ribs (chest sticks out or dips in)

Most worrying are the effects it can have on the arteries, especially where they join the heart, in some people.

But those things are a problem when the condition is undiagnosed and a severe form; many people are not affected in that way, those who are tend to have the problems spotted at an early stage as a result of regular screening. Then there are medications and surgical options to deal with those problems. There is also a school of thought that says someone with the heart problems actually has a related, even rarer syndrome, not necessarily Marfans itself.



Apparently, due to the screening and treatment options available now, the life expectancy of a kid diagnosed now with Marfan's is pretty much the same as anyone else, 70 odd years.

Doesn't mean they don't need it taken seriously and carefully monitored, but it isn't the automatic death sentence it was treated as in previous centuries.

AND you are being seen and taken seriously. So that puts your DD into a lower risk category immediately.




Hope that eases your mind slightly. I'm a right mine of information these days.