Severe ocd

[Dahlia100]

My child suffers from severe ocd and is too scared to go to therapy (erp). She has become so depressed and it has taken away everything she enjoys.

[Brena74]

You are not alone, I am going through the same with my child. She is scared to do ERP and would rather avoid everything to keep OCD happy.

[Dahlia100]

Is anything working for your child? She was on medication  but is coming off it now as she thinks it’s not doing anything. I’ve never been able to take her to psychology - the most has been 4 sessions. Ocd has put so many rules - can’t go shopping can’t play tennis, can’t exercise, can’t watch tv etc until she does certain compulsions but when she tries to do the compulsions something goes wrong and she can’t follow them through and has to wait another day. She also obsesses over needing to know things and has associations like - “you said a ‘certain word’ now I can’t ever swim now etc  She also has problems with having things written down at the psychologist so this puts a road block to help. Any suggestions on where to get help as we are turned away everywhere. Feeling hopeless as a mum I can’t help her.

[Brena74]

@Dahlia100 Your story is very similar to ours, so glad to find you here. On low dose medication but it’s not helping much with OCD, just keeping her calm and comfortable. If its the “wrong” thing    at the “wrong” time or “wrong” way according to OCD, she says she is scared and has to “start again”. OCD has found a way into everything and she does very little these days. She prefers to avoid everything and have everybody at home accomodating and/or reassuring. If we deviate, she resumes longer and/or more compulsion/s and/or ritual/s. They say ERP helps but in our case, she will still carry out her rituals and/or compulsions one way or another afterwards. OCD always wins. I cannot motivate her to face her fears because she feels calmest by simply avoiding. If your daughter won’t attend in person, is therapy by phone or video possible? For us, one hour a week is not enough because a lot happens in between, and I’m yet to find more for children with OCD. 

[Dahlia100]

Thank you- I’m so glad to be able to talk to someone else as well as I haven’t heard of anyone that has it this severe. I just want her to be happy and it’s so hard to see her in her room in darkness a lot of the time avoiding life.
We’ve tried video calls as well but she is resistant to any erp. So we feel there is nothing right now.  Showing her love and understanding works a bit to calm her down but after a while she’ll start ruminating about things. I think she needs control in life and feels the need to fix things so she can have a good future but the ocd cycle never allows that.

There are some days where you would think nothing is wrong and she seems happy interacting with her siblings, but these are rare. We live in Adelaide and I feel there is nothing here to support her. Not sure if it’s different elsewhere. 

[Brena74]

@Dahlia100, I think we are in the same place with our daughters except we are in NSW. We love and support our daughter as best we can. We appreciate and celebrate little things. Nobody really understands without experiencing it. How long has your daughter had severe ocd?

[Dahlia100]

My daughter’s became worse probably 4 years after her chronic illness diagnosis. Her anxiety slowly increased and developed trichotillomania. Then intrusive thoughts started taking over. It’s probably been severe for about 4 years now. Looking back as a young child there were signs when it was mild but we had no idea what it was. My daughter is 18 now. How about your daughter? 

[Brena74]

@Dahlia100, my daughter has had OCD for about 4 yrs too, maybe more, but it became severe this year. We saw some dark days this year thanks to OCD, so I am grateful she is safe, despite everything. I don’t know for sure but your daughter might have more options now she is 18 if she is willing. Does she at least acknowledge OCD and want to get better, even if not ready for ERP yet?

[Brena74]

@Dahlia100 just checking back to say hi and let you know I’m still around if you want to chat. Our daughter is still refusing ERP and says she thinks it will make her worse. Was your daughter able to attend school with severe ocd because ours cannot at the moment. It has taken a huge toll on our family and we cannot break free from the OCD cycle either. 

[Dahlia100]

Hi @Brena74 ,

thank you so much for writing. It’s been a rough couple of months and I couldn’t find the previous emails to access the site - so thank you!

My daughter really hit rock bottom. This coincided with getting her Atar results - which she did amazing (high 90’s) considering what she is dealing with. However her ocd told her she couldn’t do the course she wanted so she had to change her preferences. Now she will do another course but I think it’s better anyway as it will be less demanding.

My daughter makes associations all the time. I’m not sure if this is common in ocd or there are other issues.

Eg “ I wore this top today when … happened and now I’ll always remember this moment so I can’t wear this top again”

Anyway these associations make life really hard for her. My daughter couldn’t finish enrolling for Uni because of it - luckily there is still time but she feels she needs to carry out certain compulsions before she can finish the application however something always interferes with it and she ends up putting it off and stressing for longer.  
Does your daughter do this?

There was a point recently she was just crying non stop we called mental health triage - she eventually talked to them on the phone - they were trying to convince her to get help but it didn’t really help

My daughter told me to give her 10 days 
to do a compulsion then she’ll get back on track and finish enrolling start enjoying life again. At the moment she can’t eat certain things can’t do any activity she enjoys, until she does the compulsion which she can’t do unless the day is perfect and that day never comes!!! I feel so overwhelmed at not been able to get through to her.  !!!

My daughter missed a term of school but somehow was able to function. I’m sorry your daughter can’t go to school. How long has she been absent from school.? 

Whats happening with your daughter in terms if day to day ocd thoughts etc

Also I’ve just started listening to a podcast called:

”the ocd stories”

Im not sure if it will help but if I find any tips I’ll be grateful.

l life for my other three kids has been terrible because of it - they hide away in their rooms because it is so distressing. My little one who’s 7 was crying and said to me

Mummy I just want her to get better - I have so much love for her it hurts my heart. It fills up my heart with hurt so much it overflows out of my eyes.

it broke my heart….