MissPG

Hi louloulou. How is your son doing? Did he manage to eat a little bit today? Thinking about you and your family.

Hello Louloulou, Sorry your son is restricting his food intake as a result of his OCD. Our daughter is doing the same (she also restricts her fluid intake). Her care plan with CAMHS stipulates that if she hasn't drank any water or fluid for 24 hours, or hasn't eaten any food for 48 hours, she needs to go to A&E. I have taken her 4 times to A&E since October for this reason. The first time (before we had a care plan in place), she had gone without any water or food for 3 days, and was severely dehydrated. I hope your son will agree to eat tonight or tomorrow. Is he drinking at least? Can you make him drink some juice so that he gets a little bit of energy that way? It's heartbreaking to see our children suffer so much both mentally and physically as a result of their OCD. Sending you big hugs.

Hello LoopyJuice, I am sorry to hear that both you and your daughter are suffering from OCD. I can't imagine how tough it must be for your family. As my daughter refuses any contact with her dad and brother, I have been her sole carer since October 2022. I work full-time and have the chance to be able to work remotely. Luckily, my line manager and HR have been really understanding and supportive so far, and I'm working flexible hours to make up for the time I need during the day to keep company to my daughter (she spends her days in bed) and take her to medical appointments. However, the situation is really draining, both physically and mentally, as I regularly end up working late at night (until midnight / 1 am) so I am not sure how much longer I'll be able to carry on like this. I'm definitely not as productive at works as I used to me, as I constantly worry about my daughter and her future, as well as the impact her OCD is having on our family. We've talked with my partner about the possibility to give up my job, but whenever I'm available all day (at the weekends), my daughter doesn't want to spend much time with me. She's becoming more and more isolated, which is really sad to see. For now, I'm hanging onto my job as it gives me something else to think about, as well as a salary (our water and electricity bills have gone up the roof as a result of our daughter's long showers and hand washing, and the washing machine which needs to run pretty much every day for her clothes and bed linen). To answer your question, I struggle to juggle everything and try to find a bit of time for myself over the weekend to recharge my batteries before starting another week. Can your husband take more time off work? Are there any friends and relatives who can help your family during this difficult time?

Dear Holiday23, It's so nice to hear how much progress your daughter has made and that she is now out of crisis! I remember one of your messages back in February when your daughter was suffering so much with her OCD. I hope she will make her full recovery: it sounds like she's getting her life back, which is amazing!! On our side, things are still very difficult for our daughter: I had to take her back to A&E yesterday (for the third time now) as she hadn't eaten for more than 48 hours and blacked out in the shower on Monday night. At least, she had been drinking some water and juice, so she wasn't too dehydrated. She was seen by the CAMHS Response Team who seem really great: they are going to work with her over the next few weeks, with daily home visits and / or calls depending how she's feeling. I also try to remain hopeful - even though our family is still in a very dark place - and seeing your post fills me with hope. I wish to be able to share some more positive news about our daughter one day soon.

Hello Han_g. Sorry hear that your son is suffering so much from his OCD. I hope you can get the CAMHS psychiatric assessment very soon. My 14 year-old daughter, who was diagnosed with a severe contamination OCD 6 months ago, is currently being assessed for ASD and ADHD. I don't nave a lot of advice to provide, as we've seen very little progress in her condition so far. She has followed one round of 12 CBT sessions (which she struggled to engage with) and has been on the maximum dosage of Sertraline for 2.5 months. I find the support sessions organised by OCD UK very helpful: they run a Zoom sessions for young OCD sufferers (12 - 17 y.o.) every quarter (the most recent one took place last week) and my daughter found some comfort in hearing the experiences of other young people. They also run monthly Zoom sessions for family and friends supporting a loved one with OCD. The next session in on 15 May. I have copied the link to Laura's post with all the details of upcoming groups: I hope your son will get some support and access to treatment quickly. Our daughter is being supported by a CAMHS psychologist and has been referred to the OCD specialist unit but the waiting list is so long (currently 8 months for the initial assessment). The medication seems to help our daughter handled her anxiety a bit better, in the sense that her anxiety attacks don't last as long as before, but her OCD remains so strong. Take care of yourself.

Thank you Pumpkin, I also read this book by Claire Sanders which I found really useful, although somehow sobering as the recovery journey can be so long, especially for our young people who are being robbed of their teenage years. Our daughter is taking her medication (she has been on 200mg of Sertraline for 2 months now) but overall, there has been very little progress over the past months. Her physical health is actually deteriorating as a result of her OCD since her diet is so limited. As you say, there are bad days and good days, so I try to make the most of these 'better' days and hope that she will be able to recover from this terrible condition. And I keep on looking for different options for her, rather than waiting for CAMHS to do so, as they are clearly overwhelmed and under-staffed. Take care of yourself.

I'm in a similar situation with my 14-year old daughter who has been suffering from a severe case of contamination OCD since last summer, and also has panic attacks when her OCD is triggered. I sometimes manage to get her to focus on her breathing to help her calm down, or to use the 5-4-3-2-1 coping technique. But most of the times, she will just scream at me when she's in the midst of an attack, asking me to stop talking. In these instances, I walk away and leave her alone for 20 - 30 minutes until she calms down, and go back and check on her regularly until she's ready to talk. I really hope your son will engage with the private therapist: unfortunately, this wasn't the case for our daughter, back in November but we might give it another go with a different therapist. She is now seen by a CAMHS therapist while on the waiting list for the Maudsley Clinic: there's currently an 8-month-wait for the initial evaluation + another 7 to 8 months for treatment to start!!! Her CAMHS therapist has focused on building a rapport with our daughter over the past 3 months, and hasn't been able to start any CBT sessions yet, so it feels like they have made very little progress so far, and we're worried that her rituals and behaviours are become more and more entrenched. Take care of yourself, and hopefully, your son will be able to make some progress with the private therapist.

Hello Pumpkin. I hope the past few days have been easier for you and that they brought some moments of hope for the future. I also hate OCD and what this terrible disease is doing to my daughter, putting her physical health at risk, isolating her from the world, her friends and our family, torturing her every day, taking away pretty much all the joy from her life. This week has been pretty horrible, and like you, I have been in tears on several occasions, when it felt like I was losing my daughter. I saw your post on Monday, but couldn't find any word of comfort as I was pretty down myself. But some days are better than others, and it sounds like your son has made so much progress over the past 2 years ! I really hope that he will continue to improve, win over the OCD, and be able to see his friends again - or make new friends when he starts sixth form. Sending you lots of positive thoughts xx

Dear SunnySkies, I'm so sorry to hear about your son's sudden onset of OCD: we are in a similar situation with our 14-year old daughter who developed a severe case of contamination OCD very quickly last summer, and has been unable to attend school since October. The current care plan for our daughter includes instructions about her fluid and food intake: if she doesn't drink anything for 24 hours or doesn't eat for 48 hours, we have to take her to A&E. If your son is eating / drinking very little and you feel his physical health is at risk, don't hesitate to go to A&E. Our daughter was admitted to hospital twice for dehydration in October and November: she had gone without any drink or food for 3 days. She didn't want to come with us to A&E, so we ended up calling an ambulance (we waited 12 hours on both occasions but didn't have any other option). The ambulance crews were really, really nice with her. She was seen by the CAMHS crisis team as well as the Mental Health team at the hospital, and started her Sertraline treatment there. I hope your son will be able to get the support he needs. Unfortunately, the waiting times for OCD treatment are very long. We tried a private therapist in Nov / Dec but our daughter wasn't ready to engage with her therapy at the time. It's awful to watch our children suffer so much. I'm sorry I can't share more positive news at the moment, but as Hal said, there is hope as OCD is a treatable illness. Take care of yourself.

That's good to hear, Holiday23. At least things are progressing and the psychiatrist will hopefully make recommendations for your daughter to be offered treatment asap.

I'm so sorry to hear this, Holiday23. Is your daughter managing to eat and drink, and to get some sleep? I imagine how worried and frustrated you must be. Unfortunately, this is also our current experience with CAMHS: it seems like they are overwhelmed and overstretched, and as a result, unable to progress things quickly (lots of talking, but very little action so far). Our daughter's care coordinator doesn't respond to any of my emails. As my daughter blacked out in the shower on Sunday night (she hadn't eaten for 2 days once again), I was going to take her to A&E yesterday if she didn't eat by lunchtime: luckily, she accepted a food delivery, so we narrowly avoided a third trip to A&E, but at the same time, as her health continues to deteriorate, the hospital might be the safest place for her. Right now, I get the impression that CAMHS are just buying some time until something more dramatic happens to my daughter. I really hope you'll hear back from CAMHS tomorrow and that they will have a plan in place to help your daughter. This must be so hard for you and your family right now.

Thank you for your kind words, Holiday23. How is your daughter doing? Has she been assessed by CAMHS and provided a care coordinator?

Thank you Holiday23. I hope CAMHS will be able to provide the support which your daughter needs very quickly. My daughter is suffering from depression in addition to her OCD and eating disorder, but she needs to be able to manage her OCD a bit better before the Eating Disorder team (which has been great and very supportive) can work with her around her eating behaviours / relationship with food. She is now also going to be assessed for ASD / ADHD so it seems like we're facing endless hurdles! The poor thing... I feel like she could become a 'list of conditions' and forget that above all, she is a teenager who should still be able to have dreams for her future and enjoy time with her friends. In any case, it will be incredibily helpful to know if she has ASD or ADHD so that we can better support her. Personally, I'm feeling exhausted both physically and mentally, as the situation has been going on for months and we can't even take turn with my partner to look after our daughter since she's rejecting him for fear of contamination. I have a good support network, but decided to see my GP yesterday to get some help with my mental health as I'm finding it extremely difficult to remain positive and hopeful. I hope our daughters will overcome this huge challenge and will soon be able to enjoy life once again. I miss the sound of my daughter's giggles and the warmth of her hugs so much. Her Sertraline dosage was finally increased to 200mg last week, so hopefully this will help her a little bit. Sending you lots of courage and hope too! xx

Dear Holiday23, I'm so sorry to hear that your daughter's OCD has escalated so badly. We're going through a similar struggle with our 14-year old daughter and had to take her to A&E twice in October and November for dehydration as she hadn't drunk or eaten anything for over 48 hours. By the time the ambulance arrived (she wouldn't go with us by car), she hadn't had any fluid or food for more than 72 hours. The guidelines from the Eating Disorder team is to take our daughter to A&E if she goes for more than 24 hours without any fluid or more than 48 hours without any food. She was admitted on both occasions and put on a drip to re-hydrate her (we stayed 10 days at the hospital on the second occasion). She was finally allocated a CAMHS care coordinator at the end of December, but they've told us that the waiting time for the OCD Specialist Unit at the Maudsley is 8 months for an initial assessment plus another 7 / 8 months for treatment to start. It's despairing and I really don't know how my daughter will be able to cope for so long, as her condition worsens week after week. While she has reduced the amount of time she washes her hands, she has now developed emotional contamination OCD, and refuses to see or speak with her dad and brother whom she thinks will contaminate her. We tried private CBT sessions when she came out of hospital in November, but she didn't make any progress as her fears are too strong for her to challenge them and engage with the therapy. It all feels hopeless right now, and like you, it pains me to know that so many young people across the country (and their family) are not getting the help they need. I sincerely hope your daughter is being / has been looked after at the hospital, and that things are a little bit better for your family.

Dear DRS1, I'm so sorry to hear that your daughter is also suffering so much from OCD. My understanding is that GPs can't prescribe anti-depressants / SSRIs to children under the age of 16: in our case, the prescription was made by the CAMHS crisis team who got involved after our daughter's first admission to the hospital (we had to call an ambulance to take her to A&E as she hadn't been drinking or eating anything for 72 hours, and she refused to go with us to A&E). Our daughter initially refused to take her medication and only started it three weeks later, when she was admitted to the hospital a second time for the same reason (refusal to drink / eat for almost 3 days which led her to be severely dehydrated). As for recommending a child psychiatrist, do you have access to a private medical insurance who can recommend someone? Where do you live? Our insurance has not been helpful at all unfortunately, so I have been searching online myself and contacted David Veale who has accepted to see our daughter later on this month. My concern is that our daughter is depressed and has very little energy and motivation to face her fears through ERP, so we could continue to spend a lot of money (our insurance is currently refusing to cover her treatment) with little results, until she's ready to challenge her OCD. I am also mindful that I've been accommodating her OCD in order to meet her basic needs (e.g. she has a cleansing ritual in place before she can go out to buy food / drink which requires me to clean the bathroom floor, she needs me to lift the toilet seat / flush, etc.) I am trying to disentangle myself from these rituals, but it's really, really tough. I really hope your daughter can get the support she needs very soon.