mum's of sufferers, advice please!!!!!

[Guest mumstheword]

Hi everyone.

I am new to the forum and am really seeking any advice/support other parents of OCD sufferers can offer me.

We are going through a real crisis with my 17 year old son at the moment, pretty much the worst he's ever been.

He feels like life for him is such hell he should end it because its too awful,and hes just causing stress to everyone in his family!

Although his psychiatrist and psychologist are satisfied that he will not try to end his life.

And so am I because I know he cares for me too much and knows he has my support.

But this is breaking my heart watching him suffer like this.

He has just started taking sertraline and is seeing a psychologist once or twice a week. But he is currently too anxious to engage in any useful CBT.

I could go on but I won't!!

If anyone out there can give me any advice I will be VERY grateful. This feels like the hardest time of our lives so far.

Ali

[Guest Bushbaby]

Hi Ali

Welcome to the forum. Sorry to hear that your son is having problems and it is obviously very distressing for you too.

How long has your son been taking Sertraline and at what dose? It does take a bit of time to kick in and only once it has, can CBT start to be effective.

My daughter takes 175mg Sertraline now but started on a tiny dose. I am sure the psychiatrist will monitor the dose, but my daughter who is 14 was upped pretty quickly. The two treatments go hand in hand. Has the psychiatrist not suggested any intensive in-patient treatment?

I do understand what you are going through, but until the meds are at the right dose and the CBT is in place, change will be slow. Once the Sertraline dose is right, your son should be more receptive to the CBT. I know it won't feel like that at the moment as you are all suffering so much. It does work and your son can get better.

My daughter only accessed the help she needed after trying to put a knife into her skull as she just wanted the OCD to go and she felt her life was torture. That was very frightening and, as parents, it's painful watching our children suffer.

If it's any consolation, you are on the first step of the ladder as you are getting some treatment, but it can be a slow process getting help for OCD.

Does your son use the forum? It may be worth suggesting it to him, as talking to other sufferers may help him to not feel so isolated with his OCD. We all understand what he is suffering; whether as fellow sufferers or parents. It's an evil illness, but it can be controlled!

Hang on in there, Ali. This can get better. :hug:

[Guest mumstheword]

Hi Bushbaby.

Can't thank you enough for your reply. At the moment it feels like our family is being ripped apart and the pain Matt is feeling sounds very much like what your daughter has been through.

My son had already been on fluoxetine for a couple of years to treat anxiety. But only ever the 20mg dose.

Then without my knowledge he stopped taking his medication regularly, as he had convinced himself it was the medication that was making him sick.

This was infact a hiatus hernia and reflux, and bad sinuses that was making him sick in the mornings!

Any how he has only been on the sertraline for a week at 25mg. Now it is going up to 50mg until his next appointment with the psychiatrist on 1st Sept.

It is the lack of support I feel while he is in crisis that is making it so very hard for me. He trusts no-one except me and I feel like a virtual prisoner in the house.

I wondered why he couldn't have any treatment residentially because the strain on me is becoming overwhelming but there seems to be no provision where we live.

Did your daughter have any residential treatment or did you get enough support at home?

Thank you for giving me some hope at a very dark time.

Ali xx

[Guest Bushbaby]

Hi Ali

I really do feel for you, as memories of those dark days are so vivid for me, especially feeling like a prisoner in my own home, isolated and helpless. You will probably find that most OCD sufferers' parents have been through very similar experiences.

Hannah spent nearly 6 months in hospital because of her OCD. We have also been through hell and back, but things are better now, although she still does rely on me at times when OCD bites hard, but that's what mums are for. Hospital was a very difficult choice and heart-breaking, but I am so glad we forced it through, as she was so desperate to get out that she had to engage with the treatment. It also gave my family some space to get our heads together ready for the strength we needed to support her. She needed to fight the OCD and we had to step back from getting sucked in to all the rituals.

Like your son, I could spot signs of OCD from the age of 3, but it took me 10 years to get a diagnosis, even though I told CAMHS repeatedly from the age of 3 that it was OCD. It is even written in her 3 year check notes by the Health Visitor.

Your son is on a very small dose of medication at present, but that will be being monitored. They can go up to 200mg a day, if necessary, so he has quite a way to go yet. OCD and anxiety are so closely linked. The doctor who treated Hannah in hospital said they have successes on low doses of Sertraline, but I suppose as Hannah was diagnosed with extreme OCD that she needed the higher dose. When it kicked in she could see the logic of CBT and she wanted to be well and I think that's half the battle. Have you asked about hospital treatment? Are you still under CAMHS?

Hannah has had no side effects at all from Sertraline, so hopefully your son will be able to tolerate it too.

It is difficult getting support, as a parent, for OCD. This web-site has been a saviour for me. I just wish I had found it sooner. It's good to just come online and sound off and people are always so supportive and have suggestions that help you put things into perspective.

You will get there, Ali, although it probably doesn't feel like it at the moment.

[Guest mumstheword]

Thank you for that brilliant reply. I now know that someone totally understands what we are going through :hug:

We are still under camhs and the psychiatrist has said we will be until Matt is atleast 17and a half!!

But the psychologist who is working with him is from the sefton 16-18 team. They are based at alder hey hosp.

No-one has mentioned any possibility of hospital care and yet when they did the OCD diagnostic questionaire he was found to have an extremely severe case of OCD. Which of course I already knew, and had been telling the doctor since the spring, that he was getting progressively worse.

I tell you I wonder what on earth they would do if I just said thats enough, I can't look after him like this.

If I had the money and there was somewhere good he could go to for help, I would pay because rather like your daughter, I think he would be so desperate to come home that he would make his best effort to engage with the treatment.

His past behaviour has always been very manipulative and I honestly don't believe I am the best person to be looking after him at the moment

The mental health services on merseyside do seem to be quite poor in general. And there is nothing I can do about that.

The psychologist came this morning and did do a little work with matt but when she had gone things went straight back to panic, constant checking and virtually forcing me to comply with checking all sorts of things before he would settle down at all.

What a nightmare!!!

The psychologist is coming back on Thursday. I will try to speak to her without Matt but I think I will have to try my GP again and ask is there no more help available for me before the rest of the family falls apart!

Thanks again for your wise words. You really have helped me to feel that I am not going mad.

Ali xxx

[Guest heatherb]

Thank you for that brilliant reply. I now know that someone totally understands what we are going through :hug:

We are still under camhs and the psychiatrist has said we will be until Matt is atleast 17and a half!!

But the psychologist who is working with him is from the sefton 16-18 team. They are based at alder hey hosp.

No-one has mentioned any possibility of hospital care and yet when they did the OCD diagnostic questionaire he was found to have an extremely severe case of OCD. Which of course I already knew, and had been telling the doctor since the spring, that he was getting progressively worse.

I tell you I wonder what on earth they would do if I just said thats enough, I can't look after him like this.

If I had the money and there was somewhere good he could go to for help, I would pay because rather like your daughter, I think he would be so desperate to come home that he would make his best effort to engage with the treatment.

His past behaviour has always been very manipulative and I honestly don't believe I am the best person to be looking after him at the moment

The mental health services on merseyside do seem to be quite poor in general. And there is nothing I can do about that.

The psychologist came this morning and did do a little work with matt but when she had gone things went straight back to panic, constant checking and virtually forcing me to comply with checking all sorts of things before he would settle down at all.

What a nightmare!!!

The psychologist is coming back on Thursday. I will try to speak to her without Matt but I think I will have to try my GP again and ask is there no more help available for me before the rest of the family falls apart!

Thanks again for your wise words. You really have helped me to feel that I am not going mad.

Ali xxx

[Guest heatherb]

Hi Ali

I'm just another mum who knows exactly what you are going through and I concur with Bushbaby's comments. There have been times lately when I feel that maybe, just maybe, we're getting to a point where life isn't so desperate that I want to fold my clothes up and leave them on the beach... But it's taken 8 years to get here, and I know that it could all go pear shaped again at anytime in the future.

So few people seem to understand how awful this condition is - or have even heard of it. And it drives me mad when someone says they have heard of it because they know David Beckham has it; it's about arranging drink cans in the fridge...

Anyway; can't really make it better for you, but keep pushing for the help you need - you won't get it any other way.

Good luck to you all xx

[Guest mumstheword]

Hi Heather

Thanks for your good wishes. It really helps to know I'm not alone and neither is my family.

I am really struggling to get more help although I know I have to keep fighting.

Its funny isn't it when you think things have been the worst they can be, and then something happens and things take another nose dive. And your child reaches new depths of despair and takes you with them :crybaby:

My GP told me yesterday that my son could have hospital treatment but getting him to agree would be the problem!!!

I know thats true but does that mean he has to get bad enough to be sectioned!!!!????

Or do I?

We will see what today brings.

If you could tell me a little more about your story I would be pleased to know it.

I sincerely hope things stay better for you for a very long time now, preferably for good

Thanks again :hug:

Ali xx

[carolj]

I know exactly what you mean about 'taking a nose dive'. My son is 26 and he sometimes says to me 'nothing ever goes right for me' and as much as I argue that he is wrong, in my heart I have to agree it does seem that way. My daughter had leukaemia when she was 8 and my son was 6 (Im sure this was the trigger the OCD needed to take over his life) and we had so much support from every part of the community.

Im sure at the moment your son is the last thing on your mind at night, the first in the morning and all through the day. I can only tell you with the right help that does get easier.

Treatment varies so much. My son was referred by the GP for an emergency appointment as she felt he was suicidal. They were great, phoned the house, gave my son an emergency number which he could phone any time, but then came the actual appointment. I went with my son, although I didnt actually go in and he came out and went to go, I asked him whether he had to make another appointment. I was astounded, they had decided he wasnt suicidal, gave him a leaflet about computer classes (which he could have run being a computer whizz) and basically patted him on the head. As he said 'I feel even more worthless now than I did before I went there'! Even the GP said 'you need to be a murderer to get them to help'!

It is absolutely exhausting for parents and I really suggest reading this article which was published last year, which gives great insight and also suggests that, however hard it is, parents should only be on call until a certain time of night. You really do have to look after yourself too, however much anxiety it causes.

Mounting Dread

I have no personal experience of being an in-patient, but from what people have said on here, I suppose one piece of advice would be to make sure it is a specialised unit who have experience of OCD. Bushbaby obviously found the right place for her daughter and it has set her on the road to recovery and I hope the same for your son.

Carol :hug:

[Guest mumstheword]

Hi Carol

Thank you for your response. It is so heartening to here from people who obviously know exactly what is going on in our home at the moment.

I will definitely read the piece you have suggested and let you know what I think.

My son is also a real Techy. He knows computers inside out! But he says at the moment even that is like a chore and not at all enjoyable. All the joy has gone from his life

But we are determined to help him get some joy back.

His psychologist came this morning and also feels he may really need at least a short spell in hospital but she doesn't know whether they will take him in unless they feel he is genuinely suicidal or a threat to others.

She is making enquiries and getting back to me asap. She works so hard I can't believe she doesn't crack!!Makes me soooo cross.

Thanks again and thank you for sharing some of your experience with me :hug:

Ali xx