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OCD (or not) in very young children?

(8 Posts)
Mackonadragos Fri 04-Mar-16 12:44:46

I have been here before, but I thought I need a new thread here.

We have seen a general paediatrician (with some behavioural specialisation), who referred us to a neurologist as well as a psychiatrist.

My son, who is going to by 5 in April, suddenly developed OCD-like symptoms. From mid-December. Stared with refusing to eat if someone coughs, moved to eat separately, in January started hand-washing (he stopped this by now), scrutinising food, smashing food, plate, cups, everything if he wants to eat but someone coughs, demanding baths in the mornings, demanding eating in the baths, not eating food if he thinks that his grandmother touched it. Refuses food and says that it has snot on it, or looks dirty. Sometimes only drinks from bottles, washing scissors and food in a bowl of water etc before eating. Generally lot more aggressive, partly because he is more or less hungry and thirsty all day along.

The psychiatrist's conclusion was, that there is anxiety here (we agree on that), and based on some shortcomings on his social and communication skills she recommended exploring the possibility of ASD. (The only thing they found at school that he does not interact with his peers as much as it would be expected at that age.)

However, she said, that my son is too young to have OCD, and that as he still eats (wolfs down food after leaving school, and when taken out to the park to play and comes back) it is not an OCD. However, she said that it can develop into OCD.

While I am not insisting on this - rather nasty - diagnosis, I am left with no guidance here how to handle this absurdities on a daily basis. It is no small issue at home, it turned our family life upside down, and his behaviour is just utterly bizarre. I feel, that the extent of the difficulty of the situation was somehow missed by the psychiatrist.

She says that he is too young for medication (I agree) and that he is too young for CBT (possibly agree) I was recommended to do some play therapy.

She said that her youngest patient was 6,5 years old with OCD, and that there is not much literature on OCD at such a young age.

Is anyone out there with such a young child with OCD-like symptoms? I would like to hear your story and experiences! How do you cope with it? Or what to do next?

tdm1 Fri 04-Mar-16 12:52:13

Tell your psychiatrist about PANDAS - a syndrome in which children experience sudden onset of OCD symptoms after streptococcal infection.

Mackonadragos Fri 04-Mar-16 13:31:26

I talked to the neurologist, and he thought that this line should be explored too. He suggested some more blood test and an MRI scan just in case. He said it is a slim chance but we should do it.
(However, MRI scan at such age would mean also a general anaesthetics, and that would cost £4000 privately, which is too deep in our packet, so we will be referred to the NHS.)

I am not entirely convinced that it can/will be justified, also I myself do not want to go over the top. And yes, I mentioned it to the psychiatrist, her opinion was that I should not turn down the opinion of a specialist. (So far I went private, but it seems that that we are referred back to the NHS for a detailed overview.) At the moment I can't see the point for going to private CBT therapy, although the OCD-like symptoms are very oppressive on our daily life and functions.

So I would like to hear from anyone who are in a similarly grim situation. Thank you.

tdm1 Fri 04-Mar-16 17:23:20

I'm not sure what the neurologist is exploring (not knowledgeable enough) but a competent CAMHS team should be able to help - medical investigation can check whether there's any active strep infection which could be treated and clinical psychologist (with experience working with children and OCD) to help with managing symptoms.

Marchate Sat 05-Mar-16 00:06:34

I have no medical or psychological knowledge, but I have a grown up daughter with OCD

She was anxious (I would say depressed) from age 4. Some foods seemed to exacerbate her anxiety. She had such a dislike of soup that she couldn't use a spoon that had been used for soup. Squashy fruit worried her (still does)

Looking back, I think these were at least precursors to her condition. I don't think she should have been diagnosed OCD at that stage, but maybe we could have deflected some of her anxiety had we known it could occur later

Mackonadragos Sat 05-Mar-16 09:28:44

Thank you for the replies. So you say that it was soup and squashy fruit. It is interesting, because they normally say that OCD is triggered by traumatic events.

I'm going through every detail of the last 2-3 months, and I cannot pinpoint any trauma in my son's life. Yes, he has been anxious since he started school, but not major difficulties in my view.

However, his younger brother started to spit out food around the dining table, which upset him and angered him a lot. Also he brought home a leaflet from school about germs, which he explained to his grandmother. So quite average things really to me. And then it suddenly worsened.

Could I ask what happened to your daughter, did her condition gradually worsened? How old was she when she was diagnosed? Did she have CBT?

Play therapy is recommended for us so far.

moochy1 Mon 28-Mar-16 02:44:37

Hi, although my dd who is also 5 doesn't have exactly the same issues, we have some OCD type behaviour with rituals, and she has phobias about certain things, loud noise, food phobias, can no longer sleep by herself, she is generally very anxious and also gets very angry and emotional over the tiniest things. I have also been wondering about play therapy, the GP was no help to us, said she was too young and not severe enough for camhs because she appeared to be happily playing with the toys in the room. Suggested we look up private help in the form of play therapy for a child so young, but I honestly don't know where to start, do I just google play therapists in my area?! I feel so sad because she is so young to have these burdens of feelings and anxiety on her shoulders, and I don't know where to get help for her. I'd be interested to hear about any progress you make with play therapy x

Mackonadragos Mon 11-Apr-16 08:47:44

Hi moochy1, sorry for not replying a bit earlier. I have to admit that I haven't look into the recommended play therapy in depth so far. In the last couple of weeks my son made a good recovery (for the time being at least) so we just took a break from the whole issue.
We will have an NHS appointment for mid-May, and I wonder what will they make of him. Right now he looks normal, the OCD-type behaviour disappeared and he looks happy. We worked on it very hard - just to try to reduce his anxiety and that help. All of this, of course, is common sense , lots of outdoor activities (seaside walks during the holiday), lots of playing, and staying religiously calm in every situation (this latter one not always happened, but never escalated into chaotic scenes). We do not use time-out either any more, regardless what he does. And have to say he is much-much better. Having said that, the school starts tomorrow, so that will have an impact on him.
As for the play therapy, I think BAPT (British Associations of Play Therapists) would be a starting point. I would much appreciate some update in case you went for some sessions, we probably will end up in therapy sessions too at one point.

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