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AUTISTIC CHILD NOT TOLERATING CBT, SSRI NOT CONTROLLING OCD. WHAT NEXT?


Guest MAYA

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Hi all. Wondering if anyone has any feedback/ advice to give me or is going through something similar? :biggrin:

Son is 13, diagnosed with Classical Childhood Autism at 2, attends school for children with complex and profound learning disabilities. Also diagnosed with Panic disorder and Tic disorder 6 years ago. Under care of CAMHS, Psychiatrist and Clinical Psychologist since then. Started on Sertraline 6 years ago, but we have refused Aripiprazole for the tics as he has coping strategies. He has been verbal since the age of 6.

Massive deterioration in behaviour 1 year ago and diagnosed with OCD. Didn't tolerate or participate in his CBT sessions so they were abandoned after the 5th session. Sertraline has been increased months ago but we are now at crisis point. Repetitive touching of surfaces, unpleasant, often violent thoughts, needing to leave the room if certain words or numbers (many!!) are seen or heard. Constantly needing to "cleanse" surfaces if they have been touched, with an imaginary blue laser.

He is exhausted, depressed and losing weight from continuous movement and lack of sleep and needs 24 hour supervision for safety. We have the psychiatrist next week and what can we expect? Will it really be just more meds?? :weep:

Really appreciate any ideas xx

Edited by MAYA
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Welcome to the forum.  My heart goes out to you and your son, so much to cope with.  Its my son who has OCD, so I do know some of what you are going through, especially as my son's too started as a child.

Its good news that he is receiving care, it can be very difficult to get.  You say he is seeing the psychiatrist next week.  I was wondering, how often does he see someone? Does he get to see the same people so he is comfortable with them?

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Thank you so much for your replies :) and kind words. Unfortunately, there have been a few issues at school. He was roughly handled by a teacher ( resulting in a change of class) last year and I do wonder if that was a trigger. Nothing  has changed at home. 

I know we are very lucky that he is supported by such a great team and we have great working relationships with the Psychiatrist and Psychologist, who we have on speed dial. However, as he is uncooperative in CBT, I don't know if increased medication is the only route?  As an NHS nurse, I'm wary of many of the typical drugs that are prescribed.

As a small child he developed a walking refusal, apparently can happen in Autism, and he is now starting to struggle with walking again. Needing someone to be behind him and supporting him. He keeps having to step backwards and sideways and stairs are particularly dangerous and challenging.  I'm terrified of him going back to school as its an ancient building with steep cement staircases. I'm desperate to find some resolution before he returns.

We were going on holiday to France today for a week, but it's impossible. His OCD is so intense he doesn't enjoy any activities any. more. What are the chances it's just an intense relapse and will resolve or improve???

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1 hour ago, PolarBear said:

Maya,  you may have missed my previous post. Did your son's behaviour a year ago change suddenly or was it a gradual change over quite some time?

I dont think Maya missed your post PolarBear as she mentioned the rough handling by the teacher last year.

Sometimes Maya a sufferer feels better away from home, so is it worth trying?  I remember someone on here who went camping and couldn't believe the difference in her son.  She even thought of going to live in the tent!!!

In some ways it must be more difficult for you being a nurse and knowing what these medications do.  Your question about improving?  If your son wasn't having treatment, I would say no, but as he does have a lot of support hopefully they can help him get this under control.

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6 hours ago, MAYA said:

I'm terrified of him going back to school as its an ancient building with steep cement staircases. I'm desperate to find some resolution before he returns.

Is the walking problems the only OCD symptoms Maya?  Is this something that happens frequently and for a prolonged period?  I am just trying to ascertain if this is the OCD disorder, or rituals that occur occasionally (which would be OCD traits, not uncommon for children on the autism spectrum).  From what you write, I am going to assume it is OC Disorder, that being the case I don't want to be the voice of doom but the reality is that because of the co-morbidity tackling your son's OCD may not be a quick fix that will be resolved over the summer.  You may need to prepare for looking at working at OCD in small steps over a longer period.   Now don't get me wrong, with luck you can still get to the right place 'recovery finish line' but it can take some time.

You are based in Bournemouth?  What might be worth considering is if local services can't help him, you consider the long-term approach of trying (and it may take some effort) to get him to referred to an OCD specialist available through the NHS.   For adolescents there are two options through the NHS.

1 - The specialist children's clinic for young people with OCD at the Maudsley Hospital in London.  I assume this still happens, but I was once told that where a child has co-morbid issues, the OCD clinic will talk to the equivalent specialist clinic for the other issues, and create a tailored treatment plan taking into account all conditions.

2 - Professor Salkovskis runs a clinic for people with OCD and related problems in Bristol, and his team do take patients who are adolescents. Their website does actually state they treat 'People with Autistic Spectrum Disorders complicated by an Anxiety Disorder'.

I don't know which is the best option, both will be very good, so either choice may be suitable or it may be you need to consider both options in due course.  In each case the referral would need to come from the local NHS to the relevant specialist clinic.  I am happy to advise further on that.

Beating OCD is hard, and I guess in your situation is more complex, but please don't ever give up hope. Beating OCD is possible.

Ashley :)

 

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On 8/6/2016 at 20:35, Ashley said:

 

You are based in Bournemouth?  What might be worth considering is if local services can't help him, you consider the long-term approach of trying (and it may take some effort) to get him to referred to an OCD specialist available through the NHS.   For adolescents there are two options through the NH

 

Thank you so much for this info! It makes me feel I have more power with the Psychiatrist. She's very supportive but since he didn't tolerate CBT, I just assumed she'd reach for the prescription pad again. I didn't have a clue these clinics existed. 

ps, just getting the hang of posting on here :tongue:

Edited by MAYA
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Thank you so much for this info! It makes me feel I have more power with the Psychiatrist. She's very supportive but since he didn't tolerate CBT, I just assumed she'd reach for the prescription pad again. I didn't have a clue these clinics existed. :thankyousign:

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On 8/6/2016 at 20:35, Ashley said:

Is the walking problems the only OCD symptoms Maya?  Is this something that happens frequently and for a prolonged period?  I am just trying to ascertain if this is the OCD disorder, or rituals that occur occasionally (which would be OCD traits, not uncommon for children on the autism spectrum). 

Ashley, He has always had very strong ritualistic behaviours since the age of 14 months. We had grown very used to them. Approx 1 year ago he had a very stressful  time within the school setting and entered a phase of acute panic with time off school. A very short time after, we noticed that when took him out he kept having to go back again and again to touch things repetitively. He would constantly swivel his eyes up to the right hand corner of a room. He refused to look at books or any written material and sometimes ran out of the classroom. We were perplexed but assumed it was the tic disorder.

The Psychiatrist diagnosed OCD and he was able to explain all his compulsions...ie; needing to retouch everything he has just touched, having to cleanse any surface that anyone has touched with an imaginary blue laser, not being able to be in the same room as the number 6 and probably 20 things more.

It's so bad now that we had to restrain him when he gets out of the car as he needs to run continuously back to it to touch the door handle. And he is being carried up and down stairs. He won't walk at all unless he has his eyes closed and someone is holding his hand. :weep:

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On 8/6/2016 at 19:52, carolj said:

 

Sometimes Maya a sufferer feels better away from home, so is it worth trying?  I remember someone on here who went camping and couldn't believe the difference in her son.  She even thought of going to live in the tent!!!

 

Yay! So happy to read this, as I've just booked us 3 days camping.If it improves things I'm defo moving into our tent!:lol:

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On 8/6/2016 at 18:18, PolarBear said:

Maya,  you may have missed my previous post. Did your son's behaviour a year ago change suddenly or was it a gradual change over quite some time?

Hi PolarBear :) It was fairly sudden onset. Bit hard to tell as he is very ritualistic due to his Autism. It thrilled me to see you call yourself an Ex-Sufferer. Seems there is hope x

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Maya, yes OCD can be beaten.

Given what you've said, i think you should do some research on PANDAS. It's an acronym and I can't remember what it stands for. Basically it's about sudden onset OCD caused by a strep infection. I read a book about it, Saving Sammy, and your story is similar to that of the book.

Now I can't say for sure. There is the added problem of autism mixed in but I do think you should look into it.

 

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I guessed you were thinking PANDAS.  I am not at all convinced by the PANDAS stuff when it comes to OCD, for most of us OCD creeps up quickly anyway.    But either way, it still does not help in treating OCD anyway.

 

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Ashley, I encourage you to look into PANDAS, perhaps reading the book Saving Sammy. I'm not convinced the kids who have PANDAS actually have OCD but instead have bizarre OCD like symptoms. They are usually diagnosed with OCD because that's the closest thing there is and PANDAS is not widely known.

The thing with PANDAD is that normal OCD treatment does nothing because the cause, unlike with OCD, is caused by an infection. Sufferers are given high doses of antibiotics and that cures them. Their symptoms go away. Again, I don't think it is OCD.

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