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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

14yo DS refusing knee surgery

21 replies

BearLol · 05/10/2025 20:44

I’m sorry this is going to be long and probably makes no sense, my head’s all over the place. I just need to get it out somewhere and I don’t have anyone to talk to who won’t just roll their eyes or tell me I’m being dramatic.

My DS is 14, nearly 15, and he’s supposed to have a knee operation on Friday. It’s been planned since summer, he dislocated it last year during PE and it’s never been right. He’s in pain constantly, it clicks and sometimes locks so he can’t walk properly. Consultant said he needs it done before it causes more damage. It’s meant to be a straightforward day surgery thing, but he’s saying he’s not going. Completely refusing.

He’s got contamination OCD, it’s taken over our lives. It started about a year ago, maybe a bit longer, around when I think he started getting anxious about everything after Covid stuff and school pressure. Then it became constant handwashing, and not just washing but scrubbing. He won’t touch light switches, uses his sleeve, and gets upset if I forget and touch something he thinks is “dirty”.

He won’t eat food unless I unwrap it in front of him, and only if I’ve washed my hands in a certain way that he has to watch. If he thinks I’ve touched something wrong, he throws the food away. He’s lost weight, I can see it in his face. I’ve tried to make him see the GP about it but he gets panicky and won’t come in the building. I went on my own and they referred us to CAMHS back in February, but still nothing. I keep phoning and they keep saying we’re on the list. I looked into private therapy but it’s like £80-£100 a session and I just don’t have that.

I’m a single mum, it’s just me and him. His dad left when DS was 5 and lives down south somewhere with a new family. He pays some maintenance but it’s not regular. He sent £50 last month and said he’d “see what he can do” next time. I work in a school kitchen, part-time, and the pay’s rubbish. My hours got cut when they brought in agency staff. I’m behind on the gas bill again and still paying off a payday loan I stupidly took last year when the washing machine broke. So private therapy is just not happening.

Anyway, the surgery. He was ok about it at first, or at least pretending to be. We went to the pre-op and he was quiet but fine. Then last week he started panicking about hospitals being “full of bacteria” and that the air is dirty. He said he can’t sit on the bed or touch the walls. Tonight he told me flat out he’s not going, that he’ll run away if I make him. I said he can’t just not go, he needs this done, and he said he’d rather live with the pain than “get infected”. I shouted. I know I shouldn’t have but I just snapped. I told him he was being ridiculous and that people are waiting months for surgery and we’re lucky to even get a date. He just started crying and shut himself in his room.

Now I’m sitting here crying too, feeling like the worst mum in the world. I shouted at him when he’s clearly terrified. I don’t even know what to do anymore. I can’t force him into the hospital. He’s taller than me now and when he digs his heels in there’s no budging him.

He says if he has to go he wants to wear gloves and a mask the entire time, take his own blanket and pillow, and use his own water bottle. He said he’ll refuse food and won’t use the toilet there. I tried to tell him the staff will be careful, everything’s sterile, but he keeps saying “you don’t understand Mum, you just don’t get it.” He’s right, I don’t.

I’ve been trying to keep things clean at home but honestly I can’t keep up. He makes me wipe down everything with Dettol wipes before he’ll touch it. My hands are cracked from bleach. The house smells permanently of disinfectant. Sometimes I just give up and let him think things are “safe” when they’re not. I know that’s probably making it worse but I’m so tired. He gets angry if he catches me out though, says I’ve contaminated everything.

We used to be close but now he barely talks to me unless it’s about cleaning or something he needs. I can’t even give him a hug because he says I’m not clean. That broke me. He used to be such a cuddly boy.

I know people will judge but sometimes I just let him stay in his room with his phone because it’s easier than fighting. He spends hours watching videos about germs and cleaning hacks. I know I should take his phone off him but it’s the only thing that calms him. He’s obsessed with “medical facts” now and reads all these forums that make it worse.

I feel like I’ve failed him. My mum says I’m too soft and that I’ve let him “rule the roost”. Maybe she’s right. I used to think I was doing ok as a mum, but now I’m just surviving. I dread waking up because it’s just another day of arguing and cleaning and trying not to cry.

I don’t even know if cancelling the surgery would help. What if the OCD just shifts to something else? But forcing him to go feels cruel. If he freaks out in the hospital and refuses treatment we’ll just look like idiots. I can’t handle more people judging me. Last year when he had his MRI he refused to go in the scanner and the nurse looked at me like I was useless. I ended up crying in the waiting room.

I’ve tried everything people suggest. Breathing exercises, talking calmly, rewarding him for trying things. Nothing sticks. He’s so rigid in his thinking. I know deep down it’s not his fault, but when I’m tired and he’s shouting that the washing isn’t clean enough I just lose it. I said something awful last week, I told him I wish I’d never had him when he was screaming about the bathroom being “infected”. I didn’t mean it but I can’t stop replaying it in my head. He just looked at me and went quiet. I apologised straight after but it was horrible.

Sorry this is such a mess. I’ve not eaten since lunchtime, I just don’t have the energy to cook anymore. Half the time it’s just toast or whatever’s easy because he won’t eat “contaminated” food. The kitchen looks like a crime scene from all the wipes and gloves and sprays.

I don’t know what the right thing is. AIBU to cancel until he’s had help, even if that means he’s in pain for longer? Or should I somehow push through and get him there, even if he hates me for it? I’m scared he’ll just shut down completely. I’m scared full stop.

Sorry if this is rambling. I just needed to write it all down somewhere. I honestly feel like I’m drowning.

OP posts:
ZenithAndQuasar · 05/10/2025 20:50

https://www.ocduk.org/

This organisation may be able to help you and support you both whilst you're waiting for therapy.

I feel for you, because OCD is an awful, debilitating illness, that makes you feel like you're going mad, and makes you doubt everything. It's hard for the loved ones of the sufferers too.

I hope you both get some support soon. X

OCD-UK | A national OCD charity, run by, and for people with lived experience of OCD

https://www.ocduk.org

30andready · 05/10/2025 20:52

I have never posted on Mumsnet in the 20 years since I’ve been on it. But your post has touched my heart. I also have an anxious 15 year old DS ( N D ) and although I don’t have any practical suggestions I just wanted you to know - you are not alone. X

FuzzyWolf · 05/10/2025 20:53

I think you should call the consultant’s secretary tomorrow and ask for advice. They might need to rearrange but perhaps they can then add a play therapist or additional support so that your DS will find it manageable. They can also see what things of his own he can bring in from home to help him manage his fears and to accommodate his needs for keeping things safe.

I’d also recommend a trip to the GP for you both. It sounds like you are in just as difficult a situation as his carer and mum. However, whilst CAMHS are notoriously slow and not that great, his GP might be able to offer something else in the meantime.

I hope you can find a way to get the operation.

WhiteJeans7 · 05/10/2025 20:53

OP, have you spoken with your son's school about what he's going through? They might be able to offer some support while waiting for CAHMs - ask if they can refer to the MHST (Mental Health Support Team), if available in your area.

Blarn · 05/10/2025 20:56

I have no advice for what your son is going though but don't feel too bad that you shouted. Lots of us have reached that point before where we have just snapped. Beating yourself up about it isn't going to help.

Do you have a contact for the surgery you could discuss this with?

Whatflavourjellybabyisnice · 05/10/2025 20:56

No advice, but it seems like a very, very tough time for you and I would definitely not judge you.
This sounds intolerable and you're doing your best for him!

WhatASlump · 05/10/2025 20:59

You need to involve the surgical team and his GP. He sounds very mentally unwell and may not be competent to decide for himself about the surgery. I would absolutely limit time on the phone if he is using it to feed the OCD.

Barney16 · 05/10/2025 21:00

As previously suggested ring the hospital, consultants secretary, and explain. I'm sure that they will have dealt with people who have OCD before or the acutely nervous. He needs some help and so do you. Go back to the GP, speak to school. Don't worry about shouting, you are in an acutely stressful situation.

User1839474 · 05/10/2025 21:00

Look on the hospitals website for the trust and find the page for hospital passports. Fill in one for him then ring the switchboard and ask to speak to the Matron for learning disabilities. They can sort out reasonable adjustments and a play therapist. Don’t let the job description put you off. He needs them to work with him to make it work. So if he needs to see the room cleaned, have a private bathroom etc then they need to make it work. That might mean delaying it a bit but they’ll have dealt with this before. Don’t be so hard on yourself it’s really difficult dealing with an anxious child.

NautilusLionfish · 05/10/2025 21:01

Oh op. No advice but hugs. You are going through so much so give yourself credit and grace. Hope you get some help soon

PirateDays · 05/10/2025 21:02

OP I just want to say I really feel for you, we are going through something similar - the OCD - with my 12yo stepdaughter at the moment and it's such a tough thing to know how to deal with. Luckily she is in therapy but it's still a long and slow road. Really hope your son gets to see someone soon. I'd try what pp said and ring the surgeon's team in case they have any advice/ can refer him anywhere.

DIYagainstMould · 05/10/2025 21:04

Mum, you are doing great. He has issues....but if he agrees to the surgery, he can become a self employed cleaner later on life and even makes tons of money

give him the channel of this guy:

https://www.youtube.com/@MidwestMagicCleaning

Before you continue to YouTube

https://www.youtube.com/@MidwestMagicCleaning

Studyunder · 05/10/2025 21:14

Hospital passport and contact the consultant’s office. They need to know about this asap so there can be a proper discussion and appropriate planning.
You’re doing everything you can in a really difficult situation. I can only imagine how frustrating this must be for you. You’re doing great. I hope you both find the support you need

Offloadontome · 05/10/2025 21:17

Has he received any treatment for the OCD? As in, professional help? There are plenty of treatments that may help including medication, therapy, CBT. I would schedule an appointment with the consultant/ contact the secretary and tell them the issues and that you need to speak to the consultant for a new plan.
I would then ask them to postpone the surgery until his OCD is better managed.
It sounds like having the surgery at the moment would be traumatic and difficult for everyone, and since it's elective and not urgent it can be postponed and be much more successful if he's psychologically ok with it.

It sounds very difficult but that's what I would do in your situation. Get the consultant to refer on for the appropriate specialty as well, not the GP if you can help it - as then potentially it could be quicker or they can liaise with psychology/ psychiatry to specifically help him with the surgery issue as a priority.

timeandagainagain · 05/10/2025 21:23

No advice to offer, just sending hugs and lots of empathy. Hope you and your son get the help you need.

Sickoffamilydrama · 05/10/2025 21:31

You are doing a brilliant job, our autistic DD exhibits OCD not cleanliness but the organisational kind a bit like sleeping with the enemy she'd have us lining up the labels on the tins if she could 🫣

He needs to get that surgery, I dislocated both my knee caps multiple times during my teens twenties and right into my thirties, I'm mid forties now. I have recently been checked to see if I need more surgery but there's not much they can do.

Even though I saw more than one knee expert when I was a teen they didn't really do anything about it, which I'm really cross about.

I have chronic knee pain and have had one ligament replaced to try and help it. Before that it was honestly miserable at times especially at night and I was only in my mid thirties. It flared recently on the other side I'm really worried I'll end up immobile when I'm older but so far my actual bone density is good 🤞

Do not let him do that to himself, I know it's easier said than done.

Sonolanona · 05/10/2025 21:36

My DS2 developped OCD when he was a similar age. It was beyond awful.
You cannot reason with it, and all the promises in the world of what he can take with him to hospital etc will probably not get him through the door on the day.

He needs, as you know, professional help, and medication and fast. Doctors are reluctant to medicate younger teens but I would be absolutely making an appointment without him and laying out to the doctors that he has reached crisis point, and that he needs EMERGENCY assessment.

My DS2 was close to sectionable before we got help, but then it was actually the GP who was brilliant (CAMHS were pretty useless)..we had emergency medication and then he was put on a high dose of Sertraline ..which he remains on now, ten years later. My son had intrusive thoughts ..awful ones, and was terrified to go out or be near anyone because he thought HE was dangerous.

It CAN be helped but sometimes the worse thing is to go along with it, because it never reduces the fear they feel.

We managed to scrape enough together to find an excellent therapist and it really really made the difference (if you are anywhere near Oxfordshire I can absolutely reccomend them)

I'm so sorry, it's so hard to deal with .

sunshine244 · 05/10/2025 21:37

Did you discuss all of this with the consultant at the initial appointments?

A friends son recently had surgery. Different mental health issues, but from the very first appointment these issues were planned for. Staff from various teams were involved e.g. CAMHS, play therapists, occupational therapist etc. It took months to bring everyone together with a suitable plan, which included medication. The surgery went really well in the end. But only because there was open and honest communication from the start.

Re: money, your son will likely be eligible for DLA. If you are on UC top ups this will also give extra payments for both being a carer and having a chikd with a disability. You don't need a diagnosis for this - you just have to evidence that your child needs more care than a typical child of their age.

How does he cope with school? School can probably offer support like counselling.

verycloakanddaggers · 05/10/2025 21:37

He says if he has to go he wants to wear gloves and a mask the entire time, take his own blanket and pillow, and use his own water bottle. He said he’ll refuse food and won’t use the toilet there. Say yes to all this, this is all ok if it works to keep him able to go for the surgery. Ask him what food he will be able to pack to take etc. You can buy bottled water.

He's absolutely stressed out, the dislocation has presumably been awful and surgery will be frightening.

Speak to the consultant and ask for help.

Then you need help with the OCD afterwards.

Mum398 · 05/10/2025 22:12

This is tough, I really feel for you.

One of my children has had surgery quite recently and I think all of the things he has asked for to help him would be reasonable. We saw a play therapist on the ward to discuss any worries so it might be worth calling and ask if they have one and you run through all the things he is concerned about and see what they can do to accommodate them. Take food and drink from home, bring his own bedding bits, wipes everything down when you arrive, my child had surgery to the leg so actually didn’t go to the toilet, they bought disposable pots so they didn’t have to get up so there is also ways around go to the ward toilets, ask for hand washing before coming over to his bed, masks for the doctors.

When my child had surgery one child was very anxious and had a pre med to help calm their nerves and it really helped. This may be an option for you.

The surgery is important and there are ways to accommodate his worries.

In the long run hopefully services can offer support but for the short term I hope you can get him there for the surgery.

Lougle · 05/10/2025 22:36

DD3 has OCD. We saw a private psychiatrist after someone kindly gave us some money. She was diagnosed and given sertraline. It's been really helpful. She also has ASD and ADHD, and the meds for her ADHD have also helped.

He needs the surgery but the OCD needs to be dealt with too. In a lot of ways, it would be better for him to present for surgery and make outlandish demands for cleanliness because it will flag his needs.

You can't fix his OCD. No matter what rituals you agree to, his brain will just declare further things that need to be done to keep him safe.

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