OCD Action

clh71
Member

My son is 11 and has been out of school pretty much for the last year. He has been diagnosed with OCD and it has totally taken his life over. He has awful intrusive thoughts constantly, is afraid of sleeping so doesn't, barely eats or drinks due to contamination fears, and so many other "smaller" rituals there isn't the space to list them. Problem is, he accepts he has OCD, but firmly believes that OCD is not an illness, he believes it is a psychic gift and that if he ignores the rituals then he, I or other members of his family will die. How on earth do I get him to see the truth? I've bought him books, showed him discussion forums online where children explain similar symptoms, I've shown him medical data on OCD that explains what it is....he thinks we are all wrong and he continues on this cycle of constant fear and anxiety. We are all exhausted, there isn't a minute in the day that he is OK and not terrified. He is medicated (not making any difference) and is now onto session 20 of CBT and it's just getting worse and worse. What do I do? I'm at my wits end and just watching my child literally fade away. Any advice would be so appreciated, we are so alone.

Mon Nov 14 2011 12:08:31 #
clh71
Member

sorry, to add to that, I don't enable his compulsions, and I do get him to try not to do things, but he is so convinced that he is predicting the future that the anxiety doesn't die down. His thoughts don't deal with the immediate future so when I say, "look, you haven't opened and closed the door 6 times and I'm still alive", it means nothing because he feels that I will die because of that at some point in the future (in years to come), just because it hasn't happened straight away means nothing. So the whole ERP thing goes horribly wrong, although I carry on trying.

Mon Nov 14 2011 12:16:45 #
BT
Member

I wish I could offer advice, but I can’t. I have a friend of almost sixty who is suffering a very similar form of OCD, she believes her compulsions are saving loved-ones from disaster in the future, so I can’t begin to imagine how it’s affecting an eleven-year-old. You must be suffering as much as your son. Has he been referred to the Maudsley, or is all the CBT local?

Mon Nov 14 2011 12:42:28 #
clh71
Member

Hi BT. All the CBT is local, I have suggested a referal to the Maudsley but was told that they haven't "exhausted all local resources" to get the necessary PCT funding. His therapist was also a little defensive I thought, and said that they don't have a magic stick at the Maudsley! i feel, though, that as it is a centre of excellence, my son would be better off there, he's only seeing his therapist every 2 weeks for an hour, not nearly enough! The rest of the time, it's up to us, and we haven't had any advice from CAMHS on how to handle it. We've learned from books and online research. It's not great, to be honest. Any info on at what point a referal to the Maudsley is allowed? Is there a certain amount of sessions or a level of medication to reach that is the point at which they would say they have exhausted all efforts? He is so isolated now, I need to get him back in to society ASAP, so any info on the referal process would be appreciated.

Tue Nov 15 2011 10:08:46 #
Soxon
Key Master

Hi clh71,

If you go to Resource Centre you will find information on OCD including
Accessing Treatment
There is also a guide called Referral to a Centre of Excellence for OCDThis gives you the information that you need to know in order to secure a referral outside of your PCT to a Centre of Excellence.

OCD Action are also launching their Parents' Support Project, their first seminar and online parents only support group is being held this evening. To register go to Parents Support Project

Soxon
Keymaster

Tue Nov 15 2011 11:11:40 #
BT
Member

I can't add any more than Soxon about accessing treatment. I do hope you are able to obtain specialist help for your son soon. I'll send you a PM, because there is something I want to say that I would prefer to be kept private.

Tue Nov 15 2011 11:52:27 #
Jamesuk87
Member

Hi clh,

Whilst I can't offer you any advice as I am struggling to help my girlfriend right now and I am clueless. I would like to wish you, your son and your family the best of luck in getting the OCD under control.

I truly didnt understand how it can affect people until I moved in with my girlfriend.

I sincerely wish you the best of luck.

James.

Tue Nov 15 2011 14:32:38 #