Just need to write this

[SalTheWop]

As some may know, my son is disabled. he suffers from Blepharo Phimosis Ptosis Epicanthus Inversus syndrome(sounds worse than it is) and also has cerebral atrophy...thats the thing that means I have to take my 17 year old son to see Postman Pat and CBeebies ,and why he still likes "this little piggie went to market"

He also has scoliosis.My ex took him for his annual check up yesterday and was asked why it had been left for so long.After my ex directed him to look at his notes and see how intervention was stopped by a doctor at the last minute(many years ago), and how every year we have been told "We'll see if it gets any worse next year",he apparently moved swiftly on,telling her that he would end up in a wheelchair,unable to sit upright.

There is an operation, but due to the fact that he had an operation on his eyes many years ago and has a piece of metal under the bridge of his nose, they cannot do an MRI so would have to go in blind, increasing the risk of causing paralysis!!

What a choice huh? We do nothing and he could be bent over double unable to walk . Or he has an operation,risking being paralyzed from the waist down...so either way it seems he loses the only independence he has(the ability to walk around,get out of bed when he wants, go to the toilet on his own etc.)

Im feeling pretty shitty at the moment. I feel that maybe we let him down, by not fighting hard enough to get his problems seen to (which are many), we took the doctors advice and waited and waited, and here we are now!!

Dont know why Im writing this, just need to get it out (though every time I try to write it, I feel even worse than I did before).I cant talk face to face with anyone about it, it brings a lump to my throat whilst writing about it. If I had someone in front of me being all sympathetic I think, or is it know? I would end up crying like a little girl .

Theres very little that makes me want to get pissed, but God, do I feel like it now

Anyway, got a little piece of it off my chest

[WORMY]

Pm sent

[BaZa®]

Bloody hell John what can I say? Except don't you or the ex feel anyway guilty because you took advice from a professional person that seemed the correct thing to do at the time.

I have no idea what pain you and the ex must be going through mate but all I can do is hope and pray that your boy gets the best treatment available to him. You know where we are mate you are for a cuppa and a chat if we don't answer the door it's because we saw you walking up the driveway.

[Mrs C aka Pendleton Girl]

Sal, there is very little I can think of to say, I think the important thing is being able to listen at times like this.

What I will say though, without a doubt, is that you have not let your son down.

We are both thinking of you today.

Nic and Chris
x

[russbott]

I think everyone on here won't mind you writing what you need to mate. I've found that actually writing stuff down then burning it helps but that's only me. Usually end up with about 4/5 pages coz you never know when to stop!

The phrase "damned if you do and damned if you don't" springs to mind. Just keep giving him the love that he needs (and is obviously getting) and look to your mates for strength. They'll be there/here when you both need them.

Good luck and although I ain't religious there's a prayer for you all tonight.

[Scotty]

Mate, its OK to be upset, its always better to let it out and getting upset just means your human..
I feel for ya, hard choices to make there.

[Squiz]

Sounds to me like your son has two very wonderful Parents supporting him through his difficulties. You've clearly always done what you thought was best for him, nobody could or would ever fault that. Keep on doing what you're doing, that's all that matters.

Thoughts are we you all.

[banquo]

Sorry to hear that John, but however bad things are, they might not be as bad as they seem. You've said these outcomes might happen, so they are not set in stone?
Would be useful if you could speak to the consultant yourself, to weigh up the options, the risks and the likely outcomes.
Is it certain that carrying out no treatment will result in the wheelchair scenario you describe, or is it just a possibility?
If the operation is carried out, what are the chances of success, and what of failure? You mention a risk of paralysis, so how large do they think that risk is? In the absence of an MRI scan, what other scans can they carry out to minimise that risk, and where are the hospitals that have the best record of success?
The situation you describe does not seem to be that unusual in the NHS. I know people with chronic illnesses who have had appointments every few months, and every time they go, they see another doctor, who is unfamiliar with their case, has had little chance to study the copious notes, and gives a different opinion from the last doctor. Never seeing the same doctor twice isn't good, but that's the unfortunate reality in many cases, and different doctors will often have different opinions, even if they are completely familiar with the case notes.
In one of the cases I'm talking about, we've had diametrically opposed views ranging from, "You absolutely must have the operation." to "Under no circumstances allow anyone to persuade you to have the operation." That doesn't make things easy for the layman.
However, when things get really bad, as they seem to have done for you right now, it sometimes helps to be able to do something. Powerlessness is perhaps the worst state to be in, and if you're able to do anything constructive it may make you feel better, as well as giving you a better chance to make the right decisions.
Maybe you could try to get another hospital appointment to get your son's case reviewed. If they can't or won't give you a specific recommended course of action (or even if they do) ask if it's possible to get a second opinion. This should not cause any offence, because you are the concerned parent, and you must be given enough information to make an informed decision.
It might be a good idea to make an initial appointment with your GP, ideally with your ex, to discuss your concerns, and your frustration about the contradictory advice you have been given, and how best to arrive at a decision that gives the best chance of success for your son.
Hold your head high - you can only do your best, and clearly you're doing that.
Good luck, and hope you have a successful result....

[SalTheWop]

Banquo,you make a lot of sense.I do think I need to talk to the doctor personally.TBH, my ex started with " He WILL end up in a wheel chair" . Most of the rest, just sort of washed over me. I will get her to sort out an appointment, this time letting me know about it beforehand.

[MMA]

Good luck and all the best to you all .