does anyone have a child who suffers ocd?how a... - OCD Support
OCD Support
does anyone have a child who suffers ocd?how are you and more importantly they coping with it?
The ability to reply to this post has been turned off.
I find that we have to take each day as it comes; some are good, ie OCD virtually non-existent, some are not so good. Currently on medication (high dose of sertraline) and having CBT fortnightly. The past three years have been stressful and often frightening/confusing for my husband and I, and our son has lost a fair amount of schooling. Again, continuing struggles with school as there is very little understanding of this debilitating illness. I feel stronger now because of the information we have been able to get from the OCD-uk site and by attending the conference last year in Liverpool. Our son is coping better now that we all have better understanding, although is currently battling trichotillomania (hair pulling). Our biggest struggle has been feeling 'so alone' and thinking that we are the only family that has been affected! It's good to know that there IS support out there and that there are other families that are people that can offer positive support.
Thanks so much laracroft.i am getting absolutely nowhere with my son and ocd.its been like banging my head up against a very hard place.My son was on 150mg sertraline but had no effect at all.The camhs now want to put him in a child unit as a inpatient.I hate the thought of that because he is only 12.
Hi Supermom,
Was your son offered CBT alongside the sertraline? I find many CAMHS units simply fail to understand OCD, even when they offer CBT.
What is their justification for placing him in the unit? Also, be sure to ask the question exactly what treatment will he be offered as an inpatient that can not be provided as an outpatient.
Give me a call in the week at the charity I can perhaps try and give you some pointers on what the CAMHS should or should not be doing. 0845 120 3778.
Our online discussion forums (see our main website) does have lots of parents use that daily, so you may find you can get some other experiences by reading that, or posting messages for other mums in your area who might have been under the same CAMHS. Not sure if we should be posting external links on here, but as it is our own website and I feel it will help you: ocdforums.org/index.php?sho...
Ashley.
He was given both medication and cbt but the poor little chap felt he was being forced to do things that he just was not ready to do in order to keep him out of the unit.I do feel so trapped and that I will in the end be forced into letting them take him to the unit as they are saying I an refusing his treatment.
Hi Laracroft,
I am glad the conference and website was of help to you, that feeling of being alone is something that I think we can all relate to at times with our own OCD journeys.
What dosage of Setraline is he on, do you find the combination working well of the meds and the CBT?
It's good the school are so helpful, it's amazing how so many schools make life more difficult for the child and the family.
Is there anything else you think might be helpful for you all the moment?
Ashley.
Hi supermum. My daughter is 14 years old and we are on this journey with you. My daughter started restricting fluids and food 2 years ago and was hospitalised last year at the age of 13 when she collapsed after refusing to drink for 3 days. She was labelled with an eating disorder despite us repeatedly telling the paediatrician about her numerous rituals. Finally last summer she was diagnosed with OCD and commenced on sertraline which triggered a mania and a diagnosis of Bi-polar. The Bi-polar in turn led to psychosis and she has not been able to attend school since October and is now home tutored.
The lessons I have learned along this journey are that you must always follow your gut feeling. You are the one who knows your child best as you are the one who has to care for them 24 hours a day. The professionals get a snap shot of what our children will allow them to see and it is our job to shout from the hill tops about what is truly happening to our previously carefree children. It can be exhausting, you will lie awake at night frightened about what the future will bring as you hear them turning the lights on and off, opening and closing doors. They will fight you, hide things from you, become more and more distressed but every now and then you will get a glimpse of your baby and that will give you the strength to fight on. Dont allow yourself to be labelled you are not obstructive, you are a mother fighting for her child.
Finally, when we were having a similar fight with our CAMHS team we got our local MP involved and all of a sudden we were listened to.
Hi sunshine mum...wow your story had tears rolling down my cheeks.my son also has been out of school since september 2011.I refused my son going into the unit because they wanted to place him in a room that was locked because he refuses clothes of any kind.The camhs made a call to social services and accused me of refusing treatment and making my sons illness up and keeping him away from school.my son thinks that he is going to be taken away from me...i cant even imagine what is going through his little mind,mine is in a bad enough way and im the adult.I feel like all my fight is fading away.
Supermom, what help are you getting? I too was an absolute wreck and started to believe all those "helpful" friends and family who told me that I was the problem and was "just not strong enough" to look after my child. Thankfully I had a very knowledgeable GP who understood that we are not weak, in fact we have to be an extra special and strong parent to deal with what we do on a daily basis. Citalopram was my saviour 20mg a day, it did not take the pain away but gave me enough time to step back and assess the situation before the emotion kicked in.
You will keep fighting supermom because he is your baby and no matter how tired you get he needs you. I asked my daughter one day when she was calm why it was me that she fought, kicked punched and screamed at and she said "because I know you wont go". No matter what is going through your sons mind, however violent he becomes he knows that you wont go, you are his mum and you WILL keep fighting for him x
I dont get any help because it seems people just dont understand what a constant fight it is.sometimes I just feel like giving in to the whole situation and saying to camhs "do what you want"but thats not what I want I the thought of him being in the unit fills me such fear.I know that he would hate it in there and would'nt even get in the bed.He just constantly tells me he loves me.x
i can relate so mush to this thread. My son has just turned 14 but has had ocd since his grandad died when he was 11. 150 mg of sertraline isnt helping and neither has cbt so far- no idea where we go next with this really. We are currently trying to apply for help to get adaptations as he has just severely flooded the bathroom (comes through the dining room ceiling) for the third time with his extensive cleansing routines. Our insurance company have put our premium up to £700 per year
My son is 12, been out of school for over a year and your stories are so familiar, except for one thing....has anyone spoken to you about referring him to a Specialist Centre like The Maudsley? We were referred earlier this year and honestly, it was like talking to someone that finally understood my language! According to the NICE Guidlines on Childhood OCD (they're online, look them up, memorise them), there is a stepped approach to care, and admission to a unit is the last resort with referral to a Specialist Centre before that, so don't let them do it until you have seen the experts that deal with this condition and only this condition. They have to refer, it's in the guidlelines. If The Maudsley say he needs to go in, then at least you know that it is totally necessary, as they will do everything they can to avoid that. They are brilliant, insist on a referral, they take kids from all around the country.
Hello everybody it is great to finally see people who have been throught what I have been going through. My son is 26 and for the past 13 years he has suffered from ocd and bad thoughts. We saw as a family a Consultant and all that maintained was talking and more talking. When he had the thoughts he could not go to school and as a result he lost an awful lot of school. He was never put on medication when he was younger. The thoughts are that he is going to be a paedlophile and do bad things. You couldn't get a better young man. He wouldn't harm a fly. At present he is not well and his medication has been stepped up but he can't talk and feels like a zombie. When he was 16 he was referred to the Young Adult Section and again it was talk talk talk. No medication. He has had the thoughts of and on now half his life. He sees a psychiatrist and a psychologist where he is waiting on cbt but now he has been told they are sending him to a personality disorder unit. My son is not too well at present and it it hard hearing him so down and despondent. He feels that there is no hope for him and that the medical profession have written him of and in a way I feel that too because he is such a complex case they tell him anything. I am religious and I believe in God He knows the answers so I leave it in his hands. God Bless everybody and it is good to know that out there there is people like me who have children with ocd and thoughts for along while I thought I was on my own,.
The ability to reply to this post has been turned off.