Feature piece: Battling to Get an OCD Diagnosis and Treatment

Through her son’s journey to diagnosis and treatment, Laura Chapman became involved in the OCD movement in the US. Her work led her to contribute to the PsychGuides.com website article: Obsessive-Compulsive Disorder Symptoms, Causes and Effects. Here is the story of her son’s journey. If any of this sounds familiar, please seek help so the quality of your life might improve.

Battling to Get an OCD Diagnosis and Treatment

Spencer had always been in good health previously and I initially dismissed his insecurities and altered behavior as just a phase he was going through. How wrong I was, as my son now has a diagnosis of obsessive compulsive disorder (OCD) and thankfully he is receiving treatment. Not only do I wish I had asked for help sooner, but I realize I should have been more assertive when it came to getting the specialist input he needed.

Symptom onset

Shortly after Spencer turned nine he developed strep throat, but he soon bounced back and I thought that was that. However, within a matter of weeks of that throat infection, I noticed a change in him. He had always been such a happy little boy, but he suddenly became withdrawn. Before his bedtime each night he also started to check the doors were locked, as well as the windows, and for those he couldn’t reach he insisted we check for him. Then I’d maybe hear him wandering about upstairs two or three times before we went to bed and when I found him up one night in the early hours, he said he couldn’t sleep because he was worried someone might break in. I couldn’t work out why he was suddenly interested in our home security, as it wasn’t as if any of our neighbors had been broken into. What surprised me even more was this carried on for weeks and added to this Spencer also grew increasingly anxious if either I or my husband was out. He would sit on the front porch waiting for us to return and one night when my parents were looking after him, they said he sat by the window all evening watching for our car headlights. Spencer told me the next morning he couldn’t play that night as he was so worried something had happened to us.

A disappointing start

With no sign of his insecurities subsiding and the seeming impact they were starting to have on Spencer’s life, I decided after months of waiting for things to clear up by themselves it was perhaps time to take a visit to our family doctor. I’m not sure what I expected, but I didn’t expect to be dismissed as an overly anxious mother. After asking very few questions, the doctor said that Spencer would probably grow out of these anxieties, so for the moment it was just a case of wait and see. That had been my initial reaction too, but after months of this, his symptoms showed no sign of abating. However, I took the doctor’s word for it and we tried to get on with normality as best we could. It was a few weeks later when I was speaking to my mother-in-law on the phone when it came out that my brother-in-law has OCD. My husband doesn’t get along with his brother and they haven’t spoken for years, so it wasn’t surprising I didn’t know. This got me thinking though and after a quick internet search I saw that OCD can run in families and what I didn’t realize was that it can affect fairly young children too.

Slow progress

With this new information I was back to the medical practice, but after a disappointing first consultation, I arranged for Spencer to see one of the other doctors. After explaining Spencer’s symptoms and that there was a family history of OCD, this doctor agreed that it was a possibility. He didn’t give Spencer a firm diagnosis, but it was a start. The doctor suggested a course of talking therapy and gave us the contact details of some therapists in the area. However, after reading up on the benefits of CBT, I wasn’t particularly impressed with our therapy sessions, as there seemed to be a lot of talking about his fears, rather than working through strategies to overcome them. If anything Spencer’s, insecurities and repeated security related behaviors were getting worse, so it was back to see a doctor for the third time. At this appointment the doctor mentioned medications were an option, but without a firm diagnosis and specialist input I wasn’t happy to go ahead with this. Thankfully, my husband attended this time and insisted he refer Spencer to a specialist who had experience of diagnosing and managing childhood OCD.

A breakthrough

After an inevitable wait we got to see the specialist, and finally it felt like we were getting somewhere. This time Spencer was assessed thoroughly and we received confirmation that it was indeed OCD. It turned out that his earlier strep throat may even have been the trigger. The specialist advocated a tailored course of CBT and although Spencer’s symptoms did improve to an extent following these sessions, at a follow-up appointment we agreed to a trial of medication for OCD, as by now he was 10 and deemed a suitable candidate after limited improvement. Within three months of taking citalopram we noticed a difference in Spencer and over the last year his insecurities and repetitive bahaviors have continued to get better with minimal side-effects from the drug.

My experience of not recognizing the signs of OCD in Spencer and failing to push for specialist treatment earlier encouraged me to put together a guide on its causes, symptoms and treatment. I was determined that other parents and family members wouldn’t have to put up with the wait that we did, so by raising awareness of the condition it will hopefully help others to access prompt treatment for their loved ones. Even if I can just help a handful of families, that would allow me to fulfil what I set out to do with this guide.

Now aged 11 Spencer still takes citalopram and is under regular review from his specialist. We’re hopeful that now Spencer’s OCD is well-controlled it might even be possible to trial a period off the drug.


International OCD Foundation

Norsk OCD Forening

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