What do you do when 1 child is pushing a family to breaking point?

[Titsalinabumsquash]

It's now 3 hours of solid screaming and crying from my 10 year old son over doing his daily physio routine.

DS2&3 (2 and 7) are terrified and upset so they're now crying.

I'm crying, DP is stressed so is keeping very quiet.

I've just left a message for exp to tell him he either takes DS1 for a few days or I'm contacting the social services and asking them to take him before I hurt him out of sheer frustration or have a breakdown.

I have all the help there is that his hospital and community team can offer but it's still too much.
I've reached breaking point tonight and I don't know how to move forward.

[rocketeer]

I don't have any practical advice but you poor thing. Please get help and do everything you need for your family (including your son) to move forward. Much love

[Titsalinabumsquash]

Thank you.

I'm not sure what help other than the current stuff that we get there is.

He's well behaved in the hospital and the drs and nurses ask him to behave well at home an he makes all the right noises before leaving. When he's here though it's a nightmare.

He's constant asking for "one more chance" he writes me letter to tell me he'll change an work hard to do his medical stuff but then within hours he's back to screaming and shouting and refusing to do any of it.

He's so much further on with this bloody illness than he should be and that is a direct result of his refusal to comply.
I'm literally watching him destroy himself and it kills me because I can't do anything about it, I can't physically force physio on him, I can hold a nebuliser in his mouth and make him breathe, I can't make him clear his lungs or swallow a tablet but nothing at all works or gets through to him how important it all is.

I doubt his father will reply and if he does it will be a list of reasons why he can't help.

I'm so tired of it all, I already see a councillor weekly as it is.
My body is falling apart from stress.

Usually is go in and have a long chat about things with him but what's the point? He won't take it in or listen.

[QuicheConverter]

There will always be more help out there - do you have a caf? Are you in touch with the blf and cf trust? Do you get DLA? Can the cf nurses link you in with a hospice that offers respite? Can you use DLA to pay or someone to formally do chest Physio a couple of times a week? Can you swap some Physio sessions for a physical activity like swimming or trampolining that would stimulate coughing? Are you in touch with the school nurse team? Can any friends take te to her dc for a couple of days to give them a bit of respite/attention?

Do speak to ss - garner all the help you can. It sounds horrendous and you need help and support in rl.

[RandomMess]

Just want to give you hugs because I really cannot think of anything you can do

[Titsalinabumsquash]

We do get DLA and he has a session a week of formal physio with a community support worker, he also plays football once a week and does another keep for club at school.

It's the twice daily physio he's supposed to do morning and night that he just won't do, he has a trampoline which he won't jump on, he has a couple of breathing devices that he won't use or hides or breaks so he doesn't have to do them.
If we do percussion (patting of the chest to loosen everything up) he screams at us to "please stop, I can't take it! You're Hurting me please don't!" Whilst thrashing about and hitting out at me.

I've had 8 years of this daily since he was diagnosed at 2.
I've not tried the cftrust but we have been referred to camhs several times and turned away due to funding or them saying it's not their department.
We don't have a cf psychology team down here and the specialist centre is hours away so we only go for annual reviews.

He's great in the hospital, he'll jump/bounce/blow/huff and cough when required with a smile on his face.
He's meant to go in for 2 weeks every 3 months but that's been getting closer together each time because his lung function is on the decline all the time and he can't stay clear of infection.

I have asked every organisation I can't think of and all have come up blank. The help we do get is really great but it's the daily stuff that's the issue.
Nebulisers are the same, he's learnt very quickly how to "cheat" all of them.

No reply from his Dad and there isn't anyone else who would have him in the family/friendship group, he's known to be very hard work.

I will contact his community nurse tomorrow and ask if she can refer us to ss for respite.

[QuicheConverter]

Do contact the cf trust and ask for suggestions.

Speak to ss, highlight the effect on your other dc too.

Ask to be linked in with your local children's hospice - they will have respite and outreach.

Is is just clearance he won't do or does he refuse all treatment? Does he take his creon? Does he eat all the calories he should?

[QuicheConverter]

www.cfmedicine.com/htmldocs/CFText/socialworker.htm

[QuicheConverter]

www.chsw.org.uk/referrals

[Titsalinabumsquash]

Clearance he won't do at all the physical stuff he'll do on his terms only, which change every session. He gets bored of star jumps and wanted a trampoline so we got one, a few days later he's bored of that so we started running every day, he got fed up with that etc etc.
he regularly "forgets" to how to do his pep and he's "lost" the Acapella.
We've been asked not to use percussion as an only means of physio because all the time he can be active he should be, but he's lazy and he wants me to do percussion while he's in bed but I've said I'll only do it if he's done some physical activity to get things moving first.

I will ask about hospice/respite care I think it would really help to know he was somewhere where he'd be looked after for a night.

His eating is sporadic, if I present him Creon capsules and a drink he'll take them, if I simply ask him to take some Creon he won't.
He won't eat in hospital at all and at home he goes through phases. His weight is fairly stable though he gains steadily as he gets older.
His lung function is in the 60% zone, over the last 5 years it's plummeted from 115% and nothing we do increases it.

Are you a cf parent too? You seem to know more than most people about our world.

[InfinitySeven]

Call social services tonight. There will be an out-of-hours social worker, who will likely call you back. Then they'll visit, and just see how things are. They may be able to offer immediate respite tonight, if you need it, but if not, they'll make an urgent report.

It needs to be tonight, though, because the normal process is very slow. They consider that if you can wait for daylight hours, you can wait for treatment.

Social services will have an arsenal of things that they can offer, from friendship schemes which can help more than you think to regular respite, for a night or a weekend.

That is the fairest way to deal with this for yourself, your son, your DP and your other children. Continuing the status quo is getting you nowhere.

[QuicheConverter]

www.chestnut-tree-house.org.uk/healthcare_professionals/hospice-referral-process

[TheXxed]

Can you not just turn up at exps house with DS? The situation is desperate he has to step in

[QuicheConverter]

It was a differential diagnosis for a while for dd - so I read a lot but also have a hcp background.

Lots of dd's treatments are the same and we are looked after partly by the cf team. Dd is v compliant with treatment but is a lot younger and compliant generally. We were given 2 acapellas so both dc "play" with them together, the same with bubble PEP.

I find the physio a big ask myself and therefore used DLA money for membership of a lovely sports club and cheat and take dd swimming and trampolining loads.

I tried to cope for a long time but when I broke and asked the hv for support I got it. Please do ask, ask, ask for support and try your school nurse too.

[fasterkillpussycat]

So sorry to hear that. CAMHs should be helping you - can your CF nurse support you in getting help from them? You should be getting support - I cannot imagine dealing with CF alone.

[Notmadeofrib]

Could the cf charities get another, older child to speak to him? Someone that can really relate to him and help him see he can't fight this, he has to work with what he's been dealt and find acceptance.

[Titsalinabumsquash]

Thank you for everyone's help, advice and kind words.

Our local and specialist centres have pushed and pushed CAMHS but have come up again a wall. They simply don't have the funding or specialist services that they say DS needs. I think the last referral was number 6 from the specialist centre and we got the rejection letter last week.

We cannot afford to pay anyone else to come in and do his physio daily, even with DLA.

When he complies it's a 20 minute routine of pills, nebs, physio and then a final neb.
When he doesn't (99% if the time) it's a few hours, in the morning before school it makes for a very unhappy atmosphere.

I've tried everything from reward charts to tough love.

We are incredibly lucky to have a local charity that ties in with the hospital and the social services and they do everything the social services can in regards to financial help, support workers which we have and they are also giving me counselling at the moment for as long as I need/want it.

The school again a re limited in what they will/can do, they have a care plan in place for him so he can take his Creon with lunch and they can facilitate him in school on whatever hours he needs whilst he's an inpatient having iv's, but again he's ok at school, it's just us that he has this problem with.

The problem is his comprehension, we've all sat and told him about cf, shown him the child targeted videos and spoken about the different aspects, he chats away happily but then if you ask him later the same day what cf is and why he needs to take his meds and do his physio, he'll plead ignorance.

Hospital isn't an issue for him, he loves it there! He's like a local celeb when he walks through the doors, there is a great play team and he has his own room, computers to play, food of his choice and most importantly, Mum all to himself for 2 weeks.

Even if I give him choices he won't comply, I'll say "what do you want to do for physio this morning?" He'll say jumping then pep, so we go out to the trampoline and he will stand on it, moving up and down on hone surface of it but not actually jumping so it has no effect, if pushed to actually make his get leave the trampoline and jump he starts with the tears claiming he can't.
If he does his pep he will do a half hearted puff through it and then a weak cough, clearing nothing from his chest and so the arguments start.

It's frustration more than anything that something so quick and simple is causing so much trouble.

No reply from exp, and tbh I don't trust him to do the medication while DS is with him, it's one of the reasons we split up, he won't have him more than a night when he's free and even then he brings him home early stating that he's been hard work and he won't be having him for a week or 2.

Our team at the hospital really are great, they do everything they can but like me, they can't force DS to do anything, we can't manhandle him into doing it without hurting him.

I will talk to everyone again tomorrow and highlight how much it's effecting everyone but I don't hold out much hope of there being anything else that can be done that isn't already being done.

I'm going to try and sleep, I'm exhausted. Thankyou all again

[fasterkillpussycat]

That is terrible - my 6 month old daughter already has a CAHMS referral and we have met with them to give us support. Obviously it is more for our benefit at the moment but I am shocked that you are not being offered support when it is so clearly necessary. I really hope that you get some assistance tomorrow.

[Titsalinabumsquash]

Exp has agreed to take him for the rest of the week, this will hopefully give me time to gather myself and think before approaching everyone I can again to see if I can get more support.
Terrible morning this morning left me sobbing at his teacher and presenting him with a pep device to get DS to do some at school, he's not had breakfast or anything because we ran out of time, we spent 6am-8.30am with him rampaging and screaming at us.

[naty1]

Sounds like he plays up more for you guys than say the hospital. Could you video his behaviour or skype call his dad or other family members so that he is more likely to comply?

[PumpkinPie2013]

I'm glad your exp is having your son for a few days and that the teacher is helpful.

As naty1 said - can you video the behaviour and show the hospital team? They may be able to do something else from there? Maybe they could show it to CARDS?

Did you manage to contact SS? Again they should be able to help you.

I hope you get a few days respite and a chance to relax.

Take care x

[candleinthedark]

I have CF, I was diagnosed at 12, and I struggled for a very long time to keep to all the medications and physio. I understood what CF was, what I should do and knew exactly what to say to the doctors but in reality I did nothing - something I bitterly regret now.

I have found the cftrust forum really useful, there is a section for parents to chat Parents Forum

It sounds like he has lots of different physio styles to get to grips with, could he pick out the one he feels most comfortable with and stick with that. I have tried them all in an attempt to find something I would stick with. Have you tried AD? You clear your lungs by using deep and shallow breaths to move the secretions up and out of your lungs. Once you get to grips with it you can do it anywhere, while watching TV, in the shower etc as you can stand, lie down, whatever you like.

It sounds like he might be overwhelmed by all the medications/physio he has. I am not suggesting you ignore the doctors but it has never been suggested to be to do exercise before physio. Medications like Dnase and hypertonic saline should help to loosen everything before physio. I would pick your battles and try to focus on the actual clearance part and slowly work in the pre physio exercise.

What kind of nebulisor does he have? I have an Ineb, it was a revelation when I first got it, each mediation only takes about 2 mins.

One last thing. I loved going into hospital, I loved the attention that I never really got in my normal life. With two younger siblings, maybe he feels ignored and this is his way of getting attention at home. I'm sure he has taken in everything you have explained to him, but maybe he's scared by this huge pressure on him.

[Titsalinabumsquash]

He's back now from his dads, after 3 days, exp's helpful comments where "well he's behaved perfectly for me!"

I have collected him from school today to discover he's been kicked out his after school sports groups for refusing to participate.
So another method of physio he's getting away with not doing.

He's developed this astounding level of arrogance since he turned 10, he acts like he's above any type of authority, like he can say/do whatever he wants, when ever he wants.

The community nurse is on her way to see us and the hospital have told me they do have a child psychologist we can see but they don't find for cf so they'll have to dip into donated funds to do it. I'm actually really cross that it's taken them so long to tell me this tbh.

It doesn't seem like I've got anywhere far at the moment, the advice from the hospital is to not fight with him and if he choses not to do it then he is also choosing the consequences which for him will be, boring hospital stays with no computers and luxury food/play staff and most importantly NO MUM staying to wrap around his finger.

It simply cannot be him wanting attention over his siblings, he has always got 10X the attention they do.
If it is that then I'm sorry but it's tough.

I'm exhausted and feel like I've had no break from anything.

[BarbarianMum]

OP he sounds a lot like my friend's db at the same age (he had diabetes). Went into self destruct mode b/w ages 12 to 16 - it was a lot to do with fear of the future and anger with what he had to deal with but it came across as arrogance and sheer bloody-mindedness. Was very hard on the family (except his dad who buggered off).

I think your ds desperately needs someone outside the family to talk to, so kick his community nurses arse to get the funding together. So sorry you are all going through this