Does anyone have a child diagnosed with OCD?

[perservere]

My Daughter started what I now know as rituals since she was 4 years old. She started not liking clothing on, pulling at shirts saying they felt 'wrong', then velcro on shoes had to be tight, then refusing socks at all. Getting worse over the years to not using soap, couldn't turn taps on and off, couldn't wipe herself from the toilet. not wanting clothes to be washed, no soap/bubbles in the bath, if touched her she would have to shower which would take hours. No toothpaste. The list went on and more things added daily, cutlery, specific cups to use etc. Mornings were the worst for school because basically I couldn't get her to put anything on. Shoes became a no go too. She became very depressed. She was so distressed and upset she would lash out at me and could go on for hours. I knew that something was seriously wrong and searched for help everywhere I could. It is so sad when a team of professionals tell you to 'sit down, have a cup of tea and chill!"

Now to me if you think of OCD, that is not the 'typical things' i.e OCD sufferers normally wash all the time.

So to tell an authority that I believed my child had OCD was unthinkable. I was made to feel that how dare I go against 'their' diagnosis of a child that they classed as having 'Behavioural difficulties'.

2 years on from fighting a correct diagnosis she is now 8. I have fought for her which seems like forever. I took her to London and low and behold they diagnosed OCD in 2 hours!! The trouble was that because of all the time they never diagnosed her it was the most severe case they had ever seen.

By 'treating' her as a child with behavioural difficulties that was the worst thing they could have done to her. They bullied her to do things that now we know was against all professional advice. They then supplied their diagnosis to school and therefore bullied yet again. Daily tears and total fear of even entering school.

My reason for writing on here is my daughter has lost years of her life. These years should be the best and happy memories made to look back on. Sadly those 2 years were the most unhappiest. I do not believe that any authority including 'education depts' have ever Diagnosed nor treated a CHILD with OCD before. So I believe my daughter is becoming a 'trial'. Maybe all these children with 'behavioural difficulties' are going through their doors and they see no change. What happens to these children in later life. JUST MAYBE they do have OCD and you know what? it can be helped and cured with CORRECT treatment.

My daughter started immediately on tablets because of the severity by this time. I saw immediate effect. My daughter returned from one that during this time I hardly recognised and felt helpless for. I even started questioning my own parenting skills... was it my fault? did I spoil her? Should I have been more firm, strict? It was never my fault I know now. It is something that happens within the brain and they are still trying to figure out alot about that too.

She struggles daily still, and we go up and we go down. But with continuing treatment we'll get her through this.
After writing all of this, I just want to know are there any other children in Cambridgeshire whom have OCD? If you have a child with OCD you'll recognise the fact that they feel ODD/Different and would be so nice to get these children to meet and play/talk and just know there are other children in this world that have the same as them.

Thank you for reading. I am new to Mumsnet and just wanted to talk to other parents about all of this. My family told me that maybe there are forums and thats where I need to start asking. Where better than Mumsnet.

Hi. DS1 not diagnosed with OCD as his psychologist says they do not diagnose OCD until age around 11 as they do not have the cognitive process that belongs to OCD, then the second time she explained it she said its because they cannot describe whats going in their head. DS1 does not wear socks, underpants, wears very few clothes in fact, and his diet very limited. These things have been put down to sensory processing difficulties for DS1, still waiting final confirmation of this from OT but have been told by the psychologist that's what they're working with right now.
I certainly haven't ruled out OCD, and psych hasn't either for future. He won't eat anything if it's imperfect, anything slightly damaged even if it's his favourite food cannot be touched or eaten. Tonight he was left some chocolate by his grandma and he came crying cos he couldn't touch it - his brother touched it. Doesn't like DS2 near him, and anyone touching DS1 food will render it inedible.
when he was 3 he used to pick up the toilet seat with his toes.
DS1 is under assessment for possible ASD and ADHD too, and has been diagnosed with visual stress.
Can I ask where you took her? Was it a private diagnosis?

jerbil,

I have just sent you a message. Hope it helps. p.s I didn't say on the message but no not private NHS. So you can do it. Although I thought at one point I'd get a loan and go private because so ridiculous and it was if I wasn't believed and all my fault.

My son is 11. Diagnosed by CAMHS with OCD aged 9. Has a statement for school. I fought long and hard for any diagnosis, so I know that (smiles benignly) "they all develope differently, his behaviour is probably just a phase" look!

He has high functioning autism (dx at age 4). Things I thought to be caused by the autism, I know look back at and realise he's always been OCD-ish.

When he was 9, he started worrying about tv wires touching, taps and lights being turned off, germs, hand washing, people touching him or even walking near to him. They started him on treatment alongside cognitive behavioural therapy. Some of the medicines made him rapidly worse or the side effects caused very scary disturbances. He's very articulate and he'd often talk about his not "being here" and started to self harm ie. trapping his fingers in drawers or running hot hot water on his hands to vanquish the dirt and germs. It was a nightmare and I had to watch him like a hawk. He'd only flush the toilet with his foot WITH A SHOE ON.

So, where are we know? Still has the OCD. The obsessions change from time to time. He's ok about wires (tv, Hoover etc) but now he worries he might hurt someone. He won't use a knife and form as they are (potentially) deadly weapons. He won't sit close by anyone I case he does them harm. This, from a boy who cried all day when I wouldn't catch a moth and get rid of it (I couldn't catch the thing!) so it could be safely away from harm (him).

We just carry on. And it's very very hard. My gp asked me recently, "are you depressed?" as I found myself in tears in Morrisons one day. "No" I replied. "I'm just utterly heartbroken for my son". And I am. The OCD makes the autism, or HIS type of autism, look like a walk in the park.

You are not alone. But you will need to be firm with the clinicians.

My DD had a dx of OCD when she was 11. She doesn't have rituals but unwanted thoughts. they take the form of 'having to' cutting her wrists. she never has. At her worst (she had a breakdown) she had thoughts about me killing her, wanting to harm her sister and sexual thoughts. Because they are unwanted thoughts she struggled very hard with them. We took her to a private therapist, who specialised in CBT. After 6 sesssions she didn't need to go back, but it took a liitle bit longer for her to be able to remove the thoughts herself.

She still has anxiety, this is linked to a genetic nerve condition she has and she has AS traits.
But she is marvellous when compared to her mental health at it's worse.

Coco....that's good news. Can I ask? How old is your dd now?

My sons CBT is hampered by his lack of u detests ding/maturity to acknowledge that his unwanted thoughts (about him harming others) are just that, THOUGHTS. NOT ACTIONS. There are days now where he won't stand or pass within 3 feet of a person, our car, the furniture.

His attempts at self harm are his (necessary) "punishments".

Wit's end here!!

Bloody iPad.....

Should read "lack of understanding/maturity"

Hi Eliza,

I appreciate you are at your wits end , i think OCD is classed by the WHO as one of the top 10 most disabling illnesses. most people think that ocd is a mild thing, but when it is severe it is totally disabling.

my father has OCD and i've been struck before by your posts (your Kitty right?) how similar he is to you son, despite the age difference. My father has some autistic type traits but it is his ocd which is the main thing. he is completely unable to be spontaneous and every movement he makes is governed by his OCD. it is hard to watch.

it is a complete mystery to me how he ever managed to marry and have children, but i think it became worse at some point - don't know the full story.

his condition has been pretty much unchanged for the whole time I've known him, but he has refused all treatment.

sorry don't think this helps much but thought you might be interested.

Ah, Basingtonffrench.....I've been found out! Yes, I am (or was) MissKittyEliza. I think I namechanged some time ago having got into a cyber row on MN and slunk off, to recuperate. I returned some time later, in clever disguise (I thought).

Your dad sounds to have been ill for much of his life, then. How terribly sad for him and for his family. It IS debilitating. My son moves in a slowmo kind of fashion as "sharp/fast movements may be harmful Mummy". Ds really has to think carefully before he does anything. He finds socialising hard because of both conditions but, kids who were friendly with him when he "just" had the asd have ow abandoned the "cause" because it can take him half an hour to go to the bathroom let alone play out.

I know asd can be hereditary and, assuming as OCD is a good companion to OCD, I am not surprised by his diagnosis but just wish we could switch it off!

OCD is a good friend of ASD!!!

She's 14 now, she was 11 when it happened.

She went to CAHMs once but none of us thought it would do any good. She hated the 2 women she spoke too, (me too) and my Mum payed for us to go private.

I don't really know what went on, she went in after her inital appoinment, by herself, but she really connected with her therapist. she was an ex headmaster so was good with children!

He made her a cd with himself talking on it, she was sort of hypnotisted when he made it, and she listened to it everyday, lying in the dark.

He said to us that in OCD one side of the brain is domineering the other. it's logical thought which is being 'bullied' by irrational thought. You need to get both sides working as equals.

DD used to do Brain Gym exercises when she was younger, these are to get all your brain working.

I also found this a help and the book Why do I worry too Much?

hth

Yes, we have the Jolly & Grumpy one. My son's really good at art and cartooning so, he did his own version at one point. Our CBT lay is lovely but has said next time will be our last session as she feels ds is unable to access the treatment, at the moment.

Sorry....I seem to have hijacked and I don't like it when people do that!

sorry, didn't mean to stalk you eliza, or to highjack, just that your the names are so similar I didn't think you were trying to disguise yourself! i've never met anyone like my dad before. I know autistic people, and plenty of people have mild OCD, but I've never come across anyone with the autistic level of OCD he has if that makes sense. slowness is his main symptom. he is also a talented artist. bizarre.

Hi I had ocd from the age of 11 till 14 and was nearly sectioned as it was so severe. I came through it from medication and a fantastic psychologist. I am now 30 and lead a 'normal' life, i am still on medication and always will be, but just wanted to let op know that this condition can ease and hope dd will improve soon x

mummytopebs can I ask what medication you take?, has anyone medicated their child? Thanks

I find DD is much better at rationlising now she is older. I always tell her if something is making her anxious, if she can, walk away and forget about it.

I was on Anafranil Geigy in syrup form when I was a teenager, till about the age of 15. The ocd then seemed to disappear (at least I can t remember having the feelings). After the birth of my dd at 25 I started having irrational thoughts again (the doc has linked it to hormone levels). I suffered a nervous breakdown after the birth of my daughter and have been on clomprimine ever since. Clomprimine is manufactured by anafranil I think. I have tried to come off the tablets a couple of times but my irrational thoughts take over, so have been told I should stay on it for life.

When I was a teenager I needed the medication to recover the irrational thinking had taken over, therapy alone would not help.

Thank you

Hope the op feels a little easier to hear that OCD can be overcome/relieved with meds and counselling/CBT.

Bassingtonffrench. S'ok, I wasn't REALLY hiding! Sounds like my ds is a "mini-me" of your dad. My son moves in a very slow and deliberate way as anything quicker mean (I think) that he can't control his actions.

mummytopebs .... Interesting your mentioning the Anafranil. I know it as Clomipramine and it was mentioned by my ds's psychiatrist some time ago. He said he'd not tried it so far because it works well, it's one of the older meds and can have more side effects. However, we've now been through a number of meds. Side effects were dreadful and had no real effect on the OCD. My ds is now on Prozac (I know, that sounds awful at 11yrs old). But no REAL measurable difference. It may be, that we HAVE to give the Anafranil a go but I'm wary. Very wary.

cocolepew if anyone had told me I'd allow a Dr to give my son antidepressants at age 9, I'd have laughed. I thought the worst thing was GIVING such meds but I got that wrong. Giving the meds and it NOT HAVING THE MAKING DIFFERENCE. That's the worst thing.

Sorry to all if I've made you feel worse.....it's just so hard for these kids, and their families.

NOT MAKING THE SLIGHTEST DIFFERENCE

Damn you iPad !

perservere

I came across this research paper today about OCD, which you may find of some interest.
Obsessive-compulsive disorder and its related disorders: a reappraisal of obsessive-compulsive spectrum concepts

Hi
I have dd 15 with severe ocd, diagnosed at 11.
We had cbt through CAHMS, which helped, then they decided she was "cured".
Ha.
We then went private..again good results.
But then the therapist went on maternity leave ...we went somewhere else and she didn't connect.
She washes hands, has food preparation obsessions, is paronoid about vomiting and has a fixation on her brother being ill. We can't take a family holiday..too stressful, and meals out are difficult.
She has selfharmed and talkrd about suicide.
About 6 weeks ago she was so bad we got an emergency CAHMS appointment, but she refuses to go to therapy. She finds talking to teachers helps..they are wonderful...and she gets support from the behavioural staff.
If you met her, you would not think she had issues, as she is bright, vivacious, confident....but of course, she hides things very well.
I have decided not to let it get to me...I stay calm with her outbursts, am very firm with her...but when she cries and says "why aren't I normal" ...it breaks my heart.
I hope she will be able to deal with it better as she gets older.

Hi - really sorry not had time to read whole thread. I have dd 13 with severe ocd. She's currently just getting over her second massive bout of it, which has taken the form of not eating...... she went down to 15 kilos age 12. She's really insightful and determined about it, and I've found that CBT and sertraline (through Camhs) really do help, but her little sister, who has sn, has just been ill for a month, and the anxiety related to this has tipped her over the edge and reactivated her ocd. Now she is binge-eating as an ocd response. This is on the maximum dose of sertraline for her age so I'm not sure where we go from here. It's a vile vile fucking illness.
Oh, whoever said they don't diagnose till 11, I'm surprised to read this as age 9 is a peak age for first diagnosis of ocd as there are cognitive changes in the brain at that age which relate to conscience and being able to see consequences, both of which are big factors in ocd.

wickerman I agree. I was surprised that " dx not before age 11". My ds was dx aged 9.

I think " they" don't think little ones can access the CBT at such an early age. And some of the meds used are pretty strong for such young kids but the fact it.... It is diagnosable from that age.

And yes, it is vile vile vile.

I don't want to sound too woo but DD found The Bach Flower Remedies a great help. I got a personalised one from here. There is one that helps with unwanted thoughts but I can't remember which one. Even if it was a placebo effect it did help her, when she felt bad she would has a spray.

She still uses Rescue Remedy.

She also gets cranial oestopathy to help her with the amount of adrenaline she produces and to help release the presssure she puts her body under.

Aha, just as I was getting complacent........get this. Dd's OCD is now telling her that if she does not STEAL things from shops, something terrible will happen to her little sister.
So she has several times taken things from shops and then panicked and tried to put them back or tried to put money on the counter.
I am terrified that she will be caught and that she will not be able to explain herself.
Like I said. It's a vile vile fucking illness.
Coco I'm really sceptical about Bach flower remedies having any affect on OCD, tbh. But maybs it's the placebo affect. All the studies show that drugs and CBT are the only proven ways to treat it. Other methods can not only be ineffectual but counterproductive (I'm talking "counselling" " relaxation" etc).
All I know is, when my dd is on sertraline, there is a very clear difference in her baseline anxiety and her ability to fight the voices. When she's not, she can't put up nearly such a good fight. This feels biochemical to me, not psychological.