OCD fears and compulsions/rituals getting much worse

[Sally44]

My son has been developing OCD difficulties over the last year.

 

He's on medication as a general sedative. We tried Prozac, and it did not seem to give any improvement. We are about to try another medication, Citraline.

 

My son is totally obsessed about germs and getting contaminated. He gets extremely upset if someone touches him, or he walks where they have walked, or things are touched in the wrong order.

 

He sometimes gets stuck in the bathroom because he cannot get out of the room without contaminating himself again.

 

He has got bathmats, towels and carpet tiles on the floor for him to stand on. He has rituals of how he gets in and out of the bath and if he does it in the wrong order, or accidently touches something he has to start again. He won't use anything more than once. He is undressed most of the time and is taking repeated showers/baths and running his hands under the tap every couple of minutes. He is wet most of the day long. He takes ages to get out of one room into another one.

 

He is obsessed about wee and poo being on his shoes, and therefore on his feet and he has walked all through the house [or that we have walked it all through the house].

 

He constantly asks if you have washed your hands, if soap and water kills germs etc.

 

But today it has gone one stage further. He will not accept food or drink from me because I have touched it and contaminated it. Today has been a very difficult day.

 

He is also trying to get me to go through the same rituals that he does to prove that I am clean. Which I am refusing to do.

 

I'm getting really concerned for his health, and also for mine. I feel at breaking point most of the time.

 

What will happen if he refuses to eat?

Why isn't he medication working?

Could he be hospitalised at 11 years old?

Would residential boarding be a better option?

 

I feel like he and the family are not getting the help we need because Clinical Psychology have discharged us because they say they cannot do one to one sessions with him in clinic because he needs that support in school. School are supporting him, but are saying they cannot use any of the strategies suggested by Clinical Psychology because his anxiety is so high that he cannot take anything on board. But they agree he is deteriorating. The CAHMS Psychiatrist is on holiday for 2 weeks. [Wish I could have a break for a couple of weeks]. And everything and everyone is so god damn slow to do anything.

 

I don't want my son to feel like I have given up on him or abandoned him. But we cannot go on indefinately. I am so behind with everything. The house is a mess. I am constanly clearing up and washing and wiping and cleaning to pacify him, yet the house is unkempt because I cannot get on with what really does need to be done. I feel like I am going round and round in circles and getting no where.

Edited June 16, 2012 by Sally44

[A-S warrior]

education is the best cure, if that makes sence? like when an anorexic learns that food doesnt make you fat, or a a person scared of spiders learns how helpful they are to humans etc etc.

 

bottom line is we need to be exposed to germs to build an immunity to things, the common cold can kill a man if hes never been exposed to germs before.

[Sally44]

We have taught him some basic facts about germs, and about our immune system. But regardless of what he knows, the anxiety and fears remain. Afterall that is why they are called compulsions - because it is not something you have control over.

[Lynden]

Oh Sally that sounds incredibly difficult - so much for you to deal with on a daily basis. Would something like CBT help? What have the psych team suggested? I can't believe they have discharged him - surely they need to do the one to one sessions as a starting point and then take the strategies that work into school?

 

I terms of food - can you give him a box that is just his at the moment for his snacks and things? or buy those disposable plastic gloves from the chemist so he can see you aren't touching the food? You don't really want to encourage the anxiety but equally you don't want him refusing food altogether either.

 

Can you get some kind of emergency help? I can't see that residential would necessarily be a solution as he'll still have the same worries/issues there. I'd imagine if they felt he was severe enough he could be hospitalised. One of my best friends was hospitalised in a mental unit for a few months for anorexia at 15.

 

Sorry I can't offer anything hugely constructive, hopefully someone else can. It sounds like an impossible situation.

 

Lynne

[Lyndalou]

Sally, this sounds so hard to deal with and must be very difficult for you to watch.

 

My gut feeling is that the fears have taken over and some psychiatric intervention is necessary as soon as possible. It really sounds like it would be the lesser of two evils because if the fears are completely irrational then it doesn't matter how rationally you explain things to him the fear will override everything!

 

It sounds like control issues gone completely haywire. I don't know exactly how OCD works but you've said in many threads about how difficult these last few years have been and maybe initially his compulsions have been a way of feeling in control and as the anxiety has increased, the need for control has increased and it's been a bit of a runaway train.... Perhaps if the anxiety can be substantially reduced he will 'listen' better to reason?

 

Have his new school suggested anything? Are they working with him at school on his fears and compulsions? It sounds like the intervention needs to be approached in the same way by everyone involved.

 

Sorry can't be much more constructive but wish you all the best.

 

Lynda

[Shnoing]

It sounds (reads) like a massive psychiatric problem which you cannot solve by yourself. Maybe his obsession about germs is just the outlet for fears which he cannot verbalize. Was there something about "new school" - perhaps he didn't cope with the change.

 

Important: if you don't get your own things done, you'll have a breakdown, and that wouldn't help your son, either. So it seems to be the (slightly) better solution to get only him into the clinic, instead of the two of you (as soon as it's too much for you).

[Sally44]

Oh Sally that sounds incredibly difficult - so much for you to deal with on a daily basis. Would something like CBT help? What have the psych team suggested? I can't believe they have discharged him - surely they need to do the one to one sessions as a starting point and then take the strategies that work into school?

 

I terms of food - can you give him a box that is just his at the moment for his snacks and things? or buy those disposable plastic gloves from the chemist so he can see you aren't touching the food? You don't really want to encourage the anxiety but equally you don't want him refusing food altogether either.

 

Can you get some kind of emergency help? I can't see that residential would necessarily be a solution as he'll still have the same worries/issues there. I'd imagine if they felt he was severe enough he could be hospitalised. One of my best friends was hospitalised in a mental unit for a few months for anorexia at 15.

 

Sorry I can't offer anything hugely constructive, hopefully someone else can. It sounds like an impossible situation.

 

Lynne

 

 

Clinical Psychology won't do CBT or one to one therapy because you can go through things with him, and he agrees with you. But he says himself, it doesn't matter what I say my brain keeps making me do it. And when he does think he has got germs on him or he is contaminated his fear and anxiety is explosive, and when he is like that you cannot reason with him at all. Infact you end up having to shout to get him to stop doing what the is doing, which could be screaming, crying, banging his head, biting his arm, running away etc.

 

Both Clinpsych and school say his anxiety is too high for any kind of CBT therapy to work. So we need to find some medication that calms him.

 

In the meantime that leaves me dealing with it and he is wearing me into the ground.

 

I know what you are saying about the box and gloves, and if he refused to eat for a whole day, then I may have to give in. But once I give in that will become the norm, and then he will expect similar things eg. his clothes in separate boxes, me wearing gloves all the time etc. And his fear is not logical.

 

He has finally got up at 2.00pm and come down and eaten something. I am banking on his hunger overcoming his fear at some point. He also managed, at around 1.00pm to turn on his TV by himself. But he's been tantruming and raging and hurting himself up until that point. My husband says to ignore it. But he is out of the house. I am in the house, downstairs, having to listen to it all, and occasionally having to go upstairs to stop it escalating further.

 

And as these fears are irrational you cannot discuss them and come to any conclusion.

 

I just don't know what the final outcome is going to be. Do they hospitalise 11 year olds?

 

I would prefer it if he went residential during the week and home at weekends, or even a period of respite in residential.

 

I am supposed to be having major surgery, and I keep having to cancel it because there is no-one that can look after him. My husband would not cope. Plus he would have to take leave without pay. And I usually get infections after surgery, so it is never in and out in a couple of days. Last time I was kept in 11 days longer due to complications and septacemia. So I'm not looking forward to it either. I will have to talk to the SW about it.

 

It just seems that, as always, the services and support just is not there, even though I am surrounded by lots of people claiming to be supporting him [which they are in school], it is really just containing him and they've agreed he is deteriorating.

 

I don't think it is he new school because he does want to go there. He has a good friend here now and they play together everyday.

[Sally44]

Sally, this sounds so hard to deal with and must be very difficult for you to watch.

 

My gut feeling is that the fears have taken over and some psychiatric intervention is necessary as soon as possible. It really sounds like it would be the lesser of two evils because if the fears are completely irrational then it doesn't matter how rationally you explain things to him the fear will override everything!

 

It sounds like control issues gone completely haywire. I don't know exactly how OCD works but you've said in many threads about how difficult these last few years have been and maybe initially his compulsions have been a way of feeling in control and as the anxiety has increased, the need for control has increased and it's been a bit of a runaway train.... Perhaps if the anxiety can be substantially reduced he will 'listen' better to reason?

 

Have his new school suggested anything? Are they working with him at school on his fears and compulsions? It sounds like the intervention needs to be approached in the same way by everyone involved.

 

Sorry can't be much more constructive but wish you all the best.

 

Lynda

 

I think what you are saying is spot on. But HOW do you contain or reduce the anxiety? Prozac did not do it. He is on a sedative to get him to sleep at night. We are going to try another medication as from Monday. And althtough I don't like medication, there seems to be nothing else other than ride it out and hope that eventually he will grow out of it. Which is a big IF and how do you cope in the interventing years?

 

I think I really have to push the SW for respite. But it has to be appropriate. That is why I think respite in school would be better because he might even enjoy that. Being somewhere for other children with physical or learning disabilities is going to scare and worry him further.

 

And I don't want him to feel like he is being sent there because I can't take it anymore [which is the actual truth]. But his self esteem is already very low. I don't want him to feel abandoned. He watches Tracey Beaker, so he would understand the implications of going into a childrens home and would call it "the dumping ground".

[Sally44]

I supposed I just wanted to post to let someone out there know what is happening and tha I feel I am not coping - because there is no-one this end to even tell.

 

On Friday I had another Social Worker telling me "whatt a brilliant job I did" and "I don't know how you do it." Well neither do I. And patting me on the back is not helping.

 

I'm not expecting any of you to find a magic wand. It is just so unfair that our children have so many things one on top of the other, that they have to cope with. And no-one seems to understand the toll that takes on other family members.

[Lyndalou]

It's little wonder that you feel the way you do Sally.

 

I wonder if there are out-patient type treatments for OCD's of this nature - something for adults which could be tailored for children or even something actually designed for children? If your son actually acknowledges that his fears are irrational, surely this is a starting point.

 

There must be in-patient treatments for children too but where they are I don't know. However, from what you say any time away from home may be detrimental?

 

When I worked in advocacy, a colleague of mine worked with a young teen with anorexia who had been taken into an adult ward alongside very mentally ill older patients which was obviously totally unsuitable for her. The only facility for young teens which was felt to be suitable for her was about 250 miles away in the north of England and the girl did get a place there after a period of time. She went there under extreme duress but it was felt to be in her best interests by the adults involved. I know my colleague was arguing that the move would be extremely cruel and in fact any forced feeding regime was against the girl's human rights. My own personal view was that without the treatment the girl was likely to starve to death and although she would resent and even hate the adults involved for decisions made on her behalf, perhaps if she were to recover then her standpoint on the situation would possibly alter.

 

I hope the Social Worker can help you come to some decision about the way forward.

[Sally44]

I have spoken with his school this morning and they can offer/provide respite. But it has to be funded via Social Care. So lets see how the Annual Review goes tomorrow.

[darkshine]

But today it has gone one stage further. He will not accept food or drink from me because I have touched it and contaminated it. Today has been a very difficult day.

 

He is also trying to get me to go through the same rituals that he does to prove that I am clean. Which I am refusing to do.

 

I'm getting really concerned for his health, and also for mine. I feel at breaking point most of the time.

 

 

Clinical Psychology won't do CBT or one to one therapy because you can go through things with him, and he agrees with you. But he says himself, it doesn't matter what I say my brain keeps making me do it. And when he does think he has got germs on him or he is contaminated his fear and anxiety is explosive, and when he is like that you cannot reason with him at all. Infact you end up having to shout to get him to stop doing what the is doing, which could be screaming, crying, banging his head, biting his arm, running away etc.

 

And as these fears are irrational you cannot discuss them and come to any conclusion.

 

Sally, I know it isn't the same problem - but I sort of understand about the food part of things, I hate eating food served or cooked by other people - I have to check every plate, dish or glass I use - I inspect them for anything that shouldn't be there - I do this with pots and pans and cutlery too. I have my own plate and cutlery (I started doing that at a young age, I had my own plate for as long as I remember, I went out at about 10 or 11 and bought my own cutlery) I also have my own cup.

 

If someone touched my food prior to me eating it - say it was on the plate and someone touched it - it would totally freak me out because it's the food in contaminated then.

 

This is as an adult - I have enough powers of reasoning to know that my behaviour is excessive - I know I should not freak out over it.

 

When I was a kid though I'd explode over so many little things to do with food.

 

I'm still struggling now, and that's with enough maturity to know that if I don't figure out how to stop myself getting stuck into repetitive and harmful behaviours then things will only get worse.

 

And I try to think how I would deal with those problems at 11, where every day is going to a be a battle between you, your fears and everyone else. A battle for control. For control makes it feel controllable. If you control everything enough then maybe it will be ok. And to get so lost in those fears would be very tiring for everyone involved. I imagine that he is under a great degree of stress, tired, and afraid and that isn't a nice place to be - or for you to have to watch and deal with it.

 

I have a fair few irrational fears and trying to live life without controlling them is very difficult.

 

But that's where it goes wrong isn't it - when you grasp for control over things that realistically cannot be controlled - like germs for example - I can see how life would become hell - and as he tries to get more and more control to feel safer - it's making your life so very hard to work around that.

 

All I can advise, is weigh up your options and work through them. So if you think meds are worth a try in order to help him be in a state of mind where he can listen then I guess it's worth a go. If it doesn't work then more serious options come into play and only you can make that decision - but it is kinda clear that something has to happen as this seems to be spiralling out of control for your son and you/your family.

 

That's the problem with trying to gain control, it can effect everyone's lives - and I don't think your son is in a place where he can fully understand that, in his understandable quest for control.

 

My gut feeling tells me he would need extensive psychological help (from someone who knows what they are doing) and a program to help him overcome or control his fears and complusions - rather than trying to control the world. I don't know if such a thing exists for children - I've seen things and read things where adults have done this for various ocd behaviours - I don't know if a similar thing can work with kids or not though.

 

Best

 

Darkshine

[Sally44]

I don't know where we are going to end up with all of this.

 

Part of him knows it is unrealistic and wants to stop it. But there is also a part of him that says he wants to do what he does [and I don't know if he is just saying that because he is upset at the time, or whether he really does think that by doing these things he is gaining control].

[darkshine]

It's a really difficult situation - and those words don't even come close to summing it up, I know...

 

Part of me wants to be so angry for you that you aren't getting the right help - I don't know enough about children's services to give much advise and that sucks cuz if I had the answer in that way I would give it - but then I don't know anyone who knows as much as you do Sally - I mean that - you are such a fountain of knowledge - especially about the educational stuff!!

 

Sometimes when bad stuff is happening and I can't immediately solve the problem, or see no clear solution, I try to think of it in steps. And I think what step 1 will be, then I try to do step 1, if step 1 doesn't work, I think of step 2. Sometimes step 1 can be a lot longer than people can think - which doesn't help - so I also try to envision a time-scale - like a max time - so if nothing has changed by then I know to re-evaluate and consider my options. This is especially useful for things like trying meds.

 

I can't speak for him, but it would make sense that if he thinks something bad would happen if he didn't do what he does - then maybe he thinks he does want to do those things to protect himself... And the fact he says he also doesn't want to do it suggests that a part of him at least is recognising that it makes life harder in so many ways for him, and for you.

 

Is there anyone you can ask about this situation - or are you hitting dead ends with services? I would interested to know if programs exist to help children with these kinds of things - because its operating on so many levels for him (psychologically, behaviourally and emotionally) its really restricting his quality of life - and by association - yours too.

[Sally44]

Well we had the AR.

 

The Social Worker turned up at the end of it! He had got lost, plus he'd been involved in having to section someone this morning.

 

Everyone at the AR agreed that he/I need respite, and the school can offer it.

 

The SW is going to write a report to seek funding, and then we will see what happens. I don't know what or even if you can challenge a refuse to fund respite?

 

Son has started on new meds this morning, which hopefully will kick in soon and help. Same meds I had some years ago, and which I found very helpful at the time. So maybe there is more chance of them working??

 

There is no service working with children with autism/OCD that I am aware of. Unfortunately the ASD gives the the get out clause that CBT won't work with them - which is what Clinical Psychology do. And CAHMS only provide medication. And the school say they cannot use the CBT type approaches given to them by ClinPsych UNTIL he is calm enough to sit and listen and work through them with the therapy team - which is understandable. But what happens in the meantime is that I just have to keep on coping and dealing with it - which I have been doing for years. But my batteries are on empty at the moment.

 

I don't think there are any childrens' services for those with mental health issues that need hospitalisation - so that would be horrendous if he deteriorated further to that degree.

 

I think the best option would be to get a couple of nights respite per week at his school because he would be with the same kids, at night. He would get some socialisation - which he craves, but also the experienced adult support he needs when the OCD gets out of hand. And they could continue the therapy throughout the evening/nighttime for those two nights which would help with him learning/coping/generalising those strategies. And would give me and the family a break, and also a break and change of scene for him. It could all be so positive - but funding is the major issue, as it always it. SW is agreeing that I need it. But says there is virtually no funding. So looks like I may have to fight for it. But how, and who do I complain or write to.

[Lyndalou]

Fingers and toes crossed you get the funding Sally! It sounds at least like a good short-term solution to give you a break and for your son to be somewhere he feels safe already.

[darkshine]

Son has started on new meds this morning, which hopefully will kick in soon and help. Same meds I had some years ago, and which I found very helpful at the time. So maybe there is more chance of them working??

 

There is no service working with children with autism/OCD that I am aware of. Unfortunately the ASD gives the the get out clause that CBT won't work with them - which is what Clinical Psychology do. And CAHMS only provide medication. And the school say they cannot use the CBT type approaches given to them by ClinPsych UNTIL he is calm enough to sit and listen and work through them with the therapy team - which is understandable. But what happens in the meantime is that I just have to keep on coping and dealing with it - which I have been doing for years. But my batteries are on empty at the moment.

 

I don't think there are any childrens' services for those with mental health issues that need hospitalisation - so that would be horrendous if he deteriorated further to that degree.

 

I think the best option would be to get a couple of nights respite per week at his school because he would be with the same kids, at night. He would get some socialisation - which he craves, but also the experienced adult support he needs when the OCD gets out of hand. And they could continue the therapy throughout the evening/nighttime for those two nights which would help with him learning/coping/generalising those strategies. And would give me and the family a break, and also a break and change of scene for him. It could all be so positive - but funding is the major issue, as it always it. SW is agreeing that I need it. But says there is virtually no funding. So looks like I may have to fight for it. But how, and who do I complain or write to.

 

Hi Sally,

 

Hope the meds help, it's worth a try, obviously a blo0dy hard decision to come to, but it has to be worth a try, to stop your boy from deteriorating further and try to find some stability again, cuz it seems logical to attempt to stop the behaviours and fears escalating, and if he can stabilise a bit, then there's the chance that therapies could have chance of working - if you get them funded (shaking my head in disbelief that it's even in question).

 

The CBT won't work with people with ASD doesn't sit right with me, especially when it is listed as a top treatment on plenty of websites and in that Attwood book too. I'm not sure how well CBT works for children (I've not had reason to look into it - never thought of it really) but technically if it were adjusted according to age I don't see why not.

 

I had an argument about CBT, I was being refused it, I pulled info off the internet stating CBT as one of the few therapies for adults, it says it on the NAS site too. My argument was basically that CBT helps a person address their thought processes, we can clearly see evidence in my records of thinking distortions in relation to life, people, generalisations, myself (in every way), confidence, belief systems and so on. I said that in light of that evidence and the fact that CBT is the therapy advised for such things, how can it "not work for people with AS". I can't argue like that very often, but the guy backed down and agreed to ask the manager person to see if I could be granted a - I cannot remember the word - an appointment to see if I was even suitable.

 

The psychologist who undertook that appointment agreed straight away to grant me sessions and was in disbelief about how I'd had to get the appointment with her.

 

I can't believe there's nothing for children with these problems - at the same time I can - have you looked to see what things say for adults with similar issues? As in actual services that deal with that (not just info on it) to see if there's any way something could be tailored for him? I know - word trouble again - is it aversion? therapy is used for certain problems, but because of his ASD, any therapy considered would have work with and around it, cuz it's probably a key part - it's so hard when you've got so many issues with him - I really wish I could help and other than attempting to explain some of the thought processes that I've felt - I have no answers, because anything that is done with him needs to be taken seriously (by the pro's) and it would have to be thought through and planned out, be consistent, possibly very long term (assuming he doesn't miraculously flick out of it), and address not only the OCD, his ASD, but also other factors related to those such as the psychological effects this is having on him, the emotional costs, the fear and panic and control and it's all interlinked isn't it? He's got the OCD behaviours linking with ASD behaviours and thoughts, making a rigid firm and relentless quest for control, then whatever he thinks and feels is then impacted again by everything else. It isn't even a vicious circle, it's a mess, I recognise the patterns from things in my own life and it is damn hard to break those links, to find a place where things can be changed, improved or a better quality of life. And that's with the maturity to see that and know that it can't stay that way... how the hell that can be explained to a young boy I don't know - but it is clear you need help and because of the risk of making things worse I am reluctant to come up with ideas for because it's too risky to mess around with and because it is difficult to fully appreciate the situation you are in.

 

The respite sounds like it is what you need, it isn't as easy to fight when you are run down and have no energy for it. I don't know who you'd complain or write to about that... from the bits I understand about children's services, they seem to like passing the responsibility/blame on to another service. But if the SW is saying you need it, you could ask them to point you in the right direction.

 

Although it isn't much, this is a start, the meds and the respite are a start, and the solution may be a while coming, but if you can get some energy back, and if the respire helps him, maybe it will be easier to see the next steps a few weeks down the line - cuz sometimes we don't see things straight away, we need time for stuff to happen and see if it makes a difference. Frustrating - but true I think, and at least you have a couple of things to try while you find out if there's anyone anywhere near you that can at least consider helping.

 

Totally stupid idea perhaps but - you seen the Shawshank Redemption? The guy kept sending a letter a week to get a new library - I've always thought that if ever it came to it - if something came up that required me to really get someone to listen I would consider doing that - but I'd probably phone, email, and write in sequence instead of just writing - if you can find a person to contact or a service or a charity or even the council, your mp, hell even write to a bunch of people who are trained in therapies, explain your situation and ask them - there's a couple of directories that have a fair few people listed (like hundreds - but you have to check your area) so you could try that - as long as you didn't mind appearing slightly psychotic - like I said, maybe a really stupid idea, but if all else fails sometimes annoying the ###### out of people can actually work - I've seen people do it for other things - even if it is only done to just shut you up...

[Sally44]

I've phoned the school and asked for the Deputy Head to phone me. I want her to explain to me how respite is funded.

 

Apparently it can be funded via education, or health, or social services, or a combination of all three.

 

When I was talking with the SW yesterday, he asked if there were any grounds for this respite to cover 'life skills'. So straight away i can see that he is fishing to see if part of he cost could be borne by education. And I really don't think that education is going to be interested at all. So I am hoping a discussion with the Deputy Head will explain the system to me. And how you complain about the result.

 

When I know that, I will know what I can do about it. I think I will also email the centre for independent living, as they have been very helpful and told me what my legal position is.

[loubeeloulou]

I hope you manage to recharge the batteries and carry on with the day to day issues with more strength . We tried two different medications for my son before we got to sertaline, and this has been the best. It's not making him tired nor drowsy and it doesn't fog him either. It obviously doesn't take away our issues but it takes the edge off. He began it and raised through tr levels quickly, he was in 50 mg for a week then 100 then 150 and we have stayed on that although some days feel should be higher. Hopefully it will work well for your child.

I wish you luck through the funding process as in sure respite will definitely help you all particularly your son as he will have access to day and night support from staff. And it's continuity with his school peers. I hope it soon gets sorted as he clearly needs some assistance and soon, hopefully the Meds will take the edge off ... I found sertaline worked quickly into his system.

I know when things are Bad nothig anyone can say makes a difference but in sure we all know how you feel and aebd beat wishes to you

[darkshine]

I've phoned the school and asked for the Deputy Head to phone me. I want her to explain to me how respite is funded.

 

Apparently it can be funded via education, or health, or social services, or a combination of all three.

 

When I was talking with the SW yesterday, he asked if there were any grounds for this respite to cover 'life skills'. So straight away i can see that he is fishing to see if part of he cost could be borne by education. And I really don't think that education is going to be interested at all. So I am hoping a discussion with the Deputy Head will explain the system to me. And how you complain about the result.

 

When I know that, I will know what I can do about it. I think I will also email the centre for independent living, as they have been very helpful and told me what my legal position is.

 

I knew you'd find things out - you seem too determined and driven to sit back and do nothing.

 

You've made me think this week Sally, cuz I can see a fair amount of what this is like for you and the way you've gone about it is inspiring... from not knowing what to do, to starting step one, to finding out info, and now you've got a bunch of things to look into/chase up, and even though things aren't solved yet, the ball is definitely rolling eh?

 

I appreciate this is the beginning of this stage for you and that it might not be a quick result - but you've started - I don't find that easy to do in my life, but after watching you go through this it made me act about my own problems, and now I can see that I have to find out who I need to talk to, and I have to think about how to go about that, and this time I'm going to try and actually do it, cuz in some situations there are certain things that need sorting, and though our situations may be different, you have made me think that rather than sit and moan about it and do nothing (like I would have done at one time) it is better to at least try to fight some of these battles with services that don't seem to want to help people.

 

So thank you and good luck

 

PS - keep us posted!!

[Sally44]

He's only been on Sertraline a couple of days, but it has almost immediately lessened the anxiety. So I hope this is on-going progress. He still has all he issues, but you can reassure him easier, and he is not tantruming and upset for hours. School have also said that they can through some of the strategies they have been given eg. he is helped to 'fight' the compulsion and when he wins [which he did do a couple of times yesterday], he receives fighting points [rather like in a Yugioh game] for defeating [and the anxiety has been given a Yugioh type name], and in that way he is gaining 'life points', and I think he is going to be able to redeem them as some kind of reward??

 

So wondered if Sertraline might help with you Darkshine. The chemist said that it was a newer anti-anxiety drug than prozac. Maybe it is worth going to your GP and discussing your medicatiton, because your fears of addiction to valium are making it difficult for you to take. I don't think that Sertraline is addictive, and it is for anxiety and OCD in children and adults.

 

Spoke to SW, who has basically said that they will write a report, that they agree I need respite, but that his division of SS will not fund it because my son is not learning disabilities, and so it will get referred to another section of SS, and that they will probably refuse to fund it on the grounds of lack of funds! He has advised that I involve my MP and get a solicitor!

 

So that's brilliant isn't it. All those people, who struggle on, and who finally admit they cannot do it anymore are told "yes you need help and support but none is available." And are then advised to 'fight' for that support at the very time you have admitted you are exhausted and cannot go on.

 

Actually, thankfully, after two much better days for my son, I have had two good days too, so not feeling quite so desperate. But like alot of parents I am functioning at the very limit of my capabilities every day, and so the smallest additional/extra thing just makes you flip.

 

And this is at a time when the government is talking about this one core assessment and that it will involve SS involvement and support up until age 25. That bears no resemblance to the lack of funding that is the reality. Makes me so mad that politicians talk such xxxxxxxxxx, when they know it is not happening at ground level.

[darkshine]

Glad the meds are working Sally, and it sounds like his school really have their heads screwed on!! I like the sound of the strategies for fighting his stuff and winning fighting points - sounds cool and I'm glad it is working for him - I have to say that even as an adult there are certain things like that, that appeal in terms of collecting something for doing something - I think that could have worked with me as a kid

 

Yeah, it sucks just as much being told that people see you need help but if you want it you're gonna have to fight - but it's slightly better than people not seeing at all - not much - but slightly - at least if people are saying that they see you need help then you might be able to get them to back that up in writing or with phone calls to help your fight.

 

It makes me angry that the system is the way it is - the way the government says one thing but when you look for that help they say [will be there, it just isn't. Even the webiste of my local mental health trust has a wonderful home page that is full of aspirational stuff - but the reality is that hardly any of that is available.

 

And more anger inducing is the fact that it is only when a person's life is shot to hell that people even consider helping - they aren't interested in preventing demises, they aren't interested in giving the people who need minimal help to stop things getting worse, and they aren't interested in those who manage to struggle on despite everything.

 

I know you are tired, I can't imagine exactly how much, but I get the gist, and it's so blo0dy frustrating that the reason you cope is the same reason that makes it harder to get help cuz where does that leave you? Give up and let everything fall apart - just to get people to act? Or fight knowing the fact you try to keep going makes it harder to get people to listen? It's so stupid - you've been struggling like hell and this last year seems to have got worse and it's like the services don't care until you get to a point where life is total hell. And even then you get the same responses I get "of course you need help - but good luck fighting for it cuz there's no funds and no services for your needs" and they don't care that people get tired of fighting because daily life is a fight enough.

 

I have every belief that if it can be done, you can do it, you might feel at the limit of your capabilities, but I think you have reserves in store from all these years of trying to make life better for your son, and I think when the time comes you will somehow manage to have the fight again. Just remember to look after yourself as much as possible because I guess when you focus so much on someone because you have to, it can make it hard to remember to do the same for yourself sometimes too, and this is really as much about you as it is about your son - it's tied together yes, but there's also stuff that is needed for each of you individually. And thank god the school at least is really good - you say he's 11, where is he in terms of schooling life? (when I was at school it was junior til 11, then secondary from that point onwards). It would be a massive upheaval if he has to move to another one... especially when this one seems to be talking with you and moving towards a common goal - for his benefit and yours!

[Sally44]

Thank you for the inspring motivational speech.

 

Yes I have found it very frustrating over the years that any involvement from anyone is usually about crisis management rather than prevention. I said two years ago that his anxiety was chronic and that I feared his lack of support and appropriate school and therapy would mean he developed some kind of mental illness, and I specifically said I thought he was showing OCD type behaviours/thoughts. And everyone talked and sympathised, but nothing happened.

 

I'm feeling a bit better myself, but that is probably due ot the GP putting me on medication for Anxiety! I had quite an angry/tearful appointment with him where I said that although I recognise I am at a stage where I need something for my own anxiety/stress, that that was completely due to my son's needs not being met and that I had not had a break. And that the system was crazy that it let carers get to that stage and preferred to put them on pills too rather than support them.

 

My son continues to be doing well - still lots of symptoms all day/every day. But not so distressed/angry/upset, which is a relief to him and us. He must get so tired by it all.

 

And I presume that all the things you have to go through to try to eat, also make you feel so exhausted.

[darkshine]

 

Thank you for the inspring motivational speech.

 

You're welcome - we all need one sometimes

 

 

 

 

Yes I have found it very frustrating over the years that any involvement from anyone is usually about crisis management rather than prevention. I said two years ago that his anxiety was chronic and that I feared his lack of support and appropriate school and therapy would mean he developed some kind of mental illness, and I specifically said I thought he was showing OCD type behaviours/thoughts. And everyone talked and sympathised, but nothing happened.

 

Isn't there an old saying about prevention being better than the cure?

 

It's really dumb that the way things work is that everyone waits until the situation is so bad that it's hard to sort out - it probably costs them more doing it that way too! They should listen to people who tell them things are happening. I find a similar thing with my own mental health, you start to get so you know when it's going downhill so you try to avert the crisis - I get the same response, sympathy, but no help or advice.

 

 

 

I'm feeling a bit better myself, but that is probably due ot the GP putting me on medication for Anxiety! I had quite an angry/tearful appointment with him where I said that although I recognise I am at a stage where I need something for my own anxiety/stress, that that was completely due to my son's needs not being met and that I had not had a break. And that the system was crazy that it let carers get to that stage and preferred to put them on pills too rather than support them.

 

Unfortunately carers get looked after worse than the cared for, the system is all wrong on that score too... Are the meds helping to ease the anxiety slightly? (even though your anxiety and stress is completely understandable under the circumstances!!).

 

 

 

 

My son continues to be doing well - still lots of symptoms all day/every day. But not so distressed/angry/upset, which is a relief to him and us. He must get so tired by it all.

 

Anything that eases the pressure on the little 'un is good - I hope that he can continue to get better - it's not much of a happy life to be so upset and angry and stressed all the time like he was.

 

 

 

 

And I presume that all the things you have to go through to try to eat, also make you feel so exhausted.

 

Yeah, it's a battle, I don't like going on about the stuff in daily life that just makes things so much more difficult than it has to be - it makes me feel useless that I can't just wave a wand and fix it all. I'm not sleeping well either. The battle continues with the food, but is slowly improving - getting sick of milkshakes anyway so that might make more motivation to try harder

[Sally44]

Do you have the Community Nurse involved at all? I seem to remember seeing something on a TV programme about people that suffered with depression or bi-polar, and they had a daily checklist they completed which gave them a score, which quickly identified IF they were starting another episode, and the Community Nurse was involved with that.

 

Could you ask your GP for something similar so that you were getting regular visits to help with your medication and diet?

[darkshine]

I don't have a community nurse involved and to be honest I haven't bothered involving the GP for a pretty long time - partly because it's hard to get there - partly because they have been incompetent in the past.

 

With regard the MH team, I have a care-coordinator who has been away for almost half a year now and I have minimal access to a psychiatrist (who has shifted to a town 10 miles away and although he's kept me as one of the patients on his books, it doesn't provide any consistency or anything).

 

The one time I did better was when I had a more regular meetings with a psychologist, but that must be 6 years ago now I think, and although that did help with the problems at the time, they were only helped to a small degree as I had so many of them, and the guy had a job change and we had to finish a few months earlier than originally planned - the psychologist told me that if the service had allowed it he would have wanted to continue the treatment.

 

The good thing is that I was actually hungry yesterday! A couple of times! And I think I almost ate what I do when things are sort of "ok" - which is good - but I am still struggling as I am on a limited diet still - well, it's usually limited - but it's more limited than usual, which is making things hard still.

 

I've got to find out whether that doc I saw actually works there, if she does I will make an appointment for next month and see her, but she said that because I was involved with the MH team, they would have to do the referring - and the MH team requires me to do all the researching a lot of the time god knows why they all bothered getting trained if they aren't going to know anything - their philosophy seems to be "get an update on patients, send them away for a month or two, repeat the process" so it's hard to get things done - I've been trying a proactive approach for the last year or so and it isn't working much better - but at least I won the battle for CBT I guess so it hasn't been completely futile - but even then the MH team insisted I do the med change and that delayed the CBT by almost a year as I was going to start last October, then again in Feb/March, and it's finally gonna start next month - but that's for the way I think about people and going outside and dealing with my thoughts and stress/anxiety/depression - so although the eating problem is just as important, there's a limited number of sessions and no time for food.

 

I guess this food stuff is gonna be a separate battle - and as much as I hope that it won't be a battle - prior experience tells me that it will be - it's hard staying strong all the time with these people.