Teenage daughter with severe OCD Contamination: what treatment options?

[MissPG]

Hello,

I am new member to this forum: my 14-year old daughter is suffering from a severe case of contamination OCD which escalated very quickly. We first noticed some excessive cleaning behaviours at the end of June, and by September , she was spending over two hours washing her hands, one hour showering and 30+ minutes brushing her teeth. Her fear of germs impacts her ability to drink and eat food: she refuses anything which we store and cook at home as she thinks our entire home is contaminated. As a result, I need to go out every day with her to buy some (packaged) food and water from the supermarket where she carefully selects each item.

At some point in October, she was washing her hands for 4.5 hours before being able to go out and buy some food. She has now been off school for two months as her cleaning rituals were taking so much time in the evening that she wasn't going to bed until 1.30am - 2am, and she had become exhausted. 

She has just had 12 sessions of CBT with a private therapist who specialises in OCD, but she didn't engage with her treatment as she feels exhausted and her motivation to challenge her OCD is very low. She is also refusing to see and speak with her father and brother at home, as she thinks any interaction with them will contaminate her. As a result, our life has become rather stressful and it's difficult to remain hopeful. 

We are currently considering the possibility of in-patient treatment to help her manage her OCD, but I haven't been able to find a clinic that offers specialist treatments for teenagers - and I'm also concerned my daughter might find this type of treatment too traumatic if she isn't ready to stand up against her OCD. 

Is anyone on this forum aware of clinics that specialise in OCD treatment for teenagers? 

Are there any online forums suitable for teenagers which I could suggest to my daughter, so that she can discuss her experience with others? She is so isolated right now, and I'm increasingly concerned about her low mood.

Thanks in advance for any advice / suggestions.    

   

 

[Lifewillbegood]

I am not in UK so can’t give specific advice. 
I also care for an OCD sufferer. So I understand how debilitating and stressful the situation is for all parties. My prayers and best wishes to her and all family member!

A few thoughts 

1. This will be an excellent forum for her. Lot of experts giving good advice and support 

2. It seems her condition is currently severe and maybe regressing. Consider meeting a doc to try SSRI meds. They take time but generally help and can make therapy easier to implement (based on my research)

3. There is a medical condition that can cause OCD in kids…PAANGS ( spelling?) but doc should help

4. I wonder if you have checked out IOCD ( international OCD org) and NOCD (is in US not sure about Uk) to check options. 

Again my prayers and best wishes!

Hope experts from this forum provide value added and specific information asap. 

[Pumpkin]

Hi,

I'm really sorry to hear about your Daughter's contamination OCD & completely understand about the stress & worry you are going through as a family. 

Our son recently turned 16, but in April 2021 (when he was 14) he began with a similar contamination OCD (probably due to the pandemic) where he would come home from school & have to change & shower straight away. By the end of May he was showering for over 7 hours at a time & was too exhausted to go to school as he would often be up until 3 in the morning showering. Gradually hand washing was taking him up to 15 hours at a time if he needed the toilet, so he ate & drank almost nothing to avoid having to go to the toilet. 

We went privately for 5/6 sessions, but the therapist told us that due to the severity of our son's symptoms that he would need medication & that we would have to go through the NHS in order to get a psychiatrist to prescribe medication. It sounds a very similar situation to your Daughter's & the fact that she's not able to attend school & is struggling with what she eats to some extent, gives you a very good case to get an appointment sooner rather than later. 

My son was extremely lucky to get a therapist within a couple of weeks, probably due to the fact that he was losing weight, & he was initially given 25mg of sertraline, which has now gone up to 200mg. It did take a couple of months before we noticed an improvement with the meds, but without them I don't think we'd be where we are. We did think of clinics ourselves as an option, but I think the stress of being somewhere different wouldn't have helped.

Just to say that with the right support & medication, your Daughter will get better. Our son hasn't yet returned to school, as his main fear is 'contamination from school', but he can now get a shower in less than 10 mins, he can eat & drink on his own & he has home/ school tuition & is looking forward to going to 6th form college to do A'levels.

OCD UK are very supportive & have forums for young people (although my son hasn't used them) & they also have parent workshops & seminars which I've found really useful.

I hope this has been of use. I am not an expert, but just letting you know what happened to us. Please find time to look after yourselves too. My husband & I started going out for a run together or to a cafe for an hour just to have a break from the stress. You can only do your best!

Take care.

[snowbear]

6 hours ago, Pumpkin said:

OCD UK are very supportive & have forums for young people

 

There used to be a dedicated forum for young people, but it was very rarely used so it got amalgamated with the main forum. Teenagers are v ery welcome to post in the main OCD forums, which are moderated to ensure content is appropriate.

[Angst]

 MissPG

There was a series on either BBB 2 or 4 about OCD treatment for adolescents it was based at the Institute of Anxiety and Trauma at the Camberwell site of the South London and Maudsley Mental Health Trust. The institute is a centre of excellence for OCD and accepts referrals from other areas outside its catchment zone. It is worth contacting them now for an update. I would the ring the offices of OCD UK for treatment options.

Edited January 2, 2023 by Angst

[MissPG]

On 30/12/2022 at 15:25, Pumpkin said:

Hi,

I'm really sorry to hear about your Daughter's contamination OCD & completely understand about the stress & worry you are going through as a family. 

Our son recently turned 16, but in April 2021 (when he was 14) he began with a similar contamination OCD (probably due to the pandemic) where he would come home from school & have to change & shower straight away. By the end of May he was showering for over 7 hours at a time & was too exhausted to go to school as he would often be up until 3 in the morning showering. Gradually hand washing was taking him up to 15 hours at a time if he needed the toilet, so he ate & drank almost nothing to avoid having to go to the toilet. 

We went privately for 5/6 sessions, but the therapist told us that due to the severity of our son's symptoms that he would need medication & that we would have to go through the NHS in order to get a psychiatrist to prescribe medication. It sounds a very similar situation to your Daughter's & the fact that she's not able to attend school & is struggling with what she eats to some extent, gives you a very good case to get an appointment sooner rather than later. 

My son was extremely lucky to get a therapist within a couple of weeks, probably due to the fact that he was losing weight, & he was initially given 25mg of sertraline, which has now gone up to 200mg. It did take a couple of months before we noticed an improvement with the meds, but without them I don't think we'd be where we are. We did think of clinics ourselves as an option, but I think the stress of being somewhere different wouldn't have helped.

Just to say that with the right support & medication, your Daughter will get better. Our son hasn't yet returned to school, as his main fear is 'contamination from school', but he can now get a shower in less than 10 mins, he can eat & drink on his own & he has home/ school tuition & is looking forward to going to 6th form college to do A'levels.

OCD UK are very supportive & have forums for young people (although my son hasn't used them) & they also have parent workshops & seminars which I've found really useful.

I hope this has been of use. I am not an expert, but just letting you know what happened to us. Please find time to look after yourselves too. My husband & I started going out for a run together or to a cafe for an hour just to have a break from the stress. You can only do your best!

Take care.

Hi Pumpkin,

Thank you so much for your response: your family must have gone through a huge amount of stress but it's reassuring to hear that your son is doing so much better now.

We are trying to remain optimistic, and remind ourselves that all the verbal abuse which our daughter direct at us sometimes is her OCD talking, not her. Still, some days are much harder than others, and we're also concerned about the impact which our daughter's condition will have on her brother who is finding it very difficult to cope with her bouts of anger/rage and most recently, her refusal to see or speak with him, as well as her dad.

Our daughter started taking sertraline (50mg) two months ago and she is currently on 100mg, but over the past couple of weeks, she hasn't been taking it regularly for a number of reasons (e.g. she dropped one blister of pills on the floor and can't use any of the pills) and we can see how this is impacting her mood. CAMHS have also just agreed to take her on, and she has finally been appointed a care coordinator whom we should meet in a couple of weeks' time.   

I will look out for the parent workshops and seminars, as we are feeling rather isolated and helpless at the moment.

Thanks again for sharing your experience! I hope your son will continue to do well and enjoy 6th form!

 

   

[MissPG]

29 minutes ago, Angst said:

 MissPG

There was a series on either BBB 2 or 4 about OCD treatment for adolescents it was based at the Institute of Anxiety and Trauma at the Camberwell site of the South London and Maudsley Mental Health Trust. The institute is a centre of excellence for OCD and accepts referrals from other areas outside its catchment zone. It is worth contacting them now for an update. I would the ring the offices of OCD UK for treatment options.

Thank you Angst!

I will check this series on BBC iPlayer. We are aware of the OCD specialist unit at the Maudsley Clinic: my daughter is currently under the care of their Eating Disorder team who have written a referral letter to the OCD unit. However, the referral letter needs to come from our CAMHS apparently, so this has added some delay in the referral process as we've only just been appointed a care coordinator. They have also explained that the waiting list is very long: around 8 months at the moment! 

Our daughter has expressed suicidal thoughts on several occasions, so it's difficult to imagine that she will be able to cope with her OCD for many more months - especially as new symptoms seem to come up over time. For instance, while she doesn't spend as much time washing her hands as she used to, she is now demanding that the whole family remains quiet while she does her rituals! Or she is now asking me not to talk with my son or her dad when I go downstairs to fetch something for her (which suggests some emotional contamination OCD).

We will see what CAMHS suggests during our next appointment. For now, we are trying to take each day as it comes, and support our daughter in meeting her basic needs.

Many thanks again for your recommendation.     

[Holiday23]

I feel I am ditto -ing so many of your comments and frustrations. My teenage daughter no longer leaves the house, will avoid drinking so they don’t have to use the bathroom, can’t get dressed-undressed independently and refuses support, she won’t wash, prepare food, won’t use the bathroom without a parent being present and then spends long periods of time doing compulsions, collapsed on the floor in frustration or seemingly doing nothing, but unable to leave and screaming if we try to leave.  The list is growing everyday of the compulsions she performs and she is  shutting down on life. 

She was diagnosed with OCD by a private psychologist in the summer of 2022. We’ve been to the doctors, referred to CAMHS (massive waiting list - 24?months) tried private CBT/ERP therapy. and back to the doctor again to request medication. 

No one is listening!! The doctor is too scared to prescribe and shrugs saying we’ll have to go private or wait for CAMHS; my daughter refuses to attend therapy or believe things can get better; family life is collapsing and unbearable. 

Her fear is that something awful will happen if she doesn’t do the compulsions. She’s unwilling to challenge this or believe that it can be challenged.

Does anyone know whether a GP can prescribe a 15/16year old medication for OCD or does it have to be a psychiatrist? 
 

Can anyone recommend a child psychiatrist? I’m pinning all my hopes that my daughter will be willing to actually take the meds if we can get them prescribed or if her OCD will stop her from trying. 
 

 

 

 

[DRS1]

2 hours ago, Holiday23 said:

I feel I am ditto -ing so many of your comments and frustrations. My teenage daughter no longer leaves the house, will avoid drinking so they don’t have to use the bathroom, can’t get dressed-undressed independently and refuses support, she won’t wash, prepare food, won’t use the bathroom without a parent being present and then spends long periods of time doing compulsions, collapsed on the floor in frustration or seemingly doing nothing, but unable to leave and screaming if we try to leave.  The list is growing everyday of the compulsions she performs and she is  shutting down on life. 

She was diagnosed with OCD by a private psychologist in the summer of 2022. We’ve been to the doctors, referred to CAMHS (massive waiting list - 24?months) tried private CBT/ERP therapy. and back to the doctor again to request medication. 

No one is listening!! The doctor is too scared to prescribe and shrugs saying we’ll have to go private or wait for CAMHS; my daughter refuses to attend therapy or believe things can get better; family life is collapsing and unbearable. 

Her fear is that something awful will happen if she doesn’t do the compulsions. She’s unwilling to challenge this or believe that it can be challenged.

Does anyone know whether a GP can prescribe a 15/16year old medication for OCD or does it have to be a psychiatrist? 
 

Can anyone recommend a child psychiatrist? I’m pinning all my hopes that my daughter will be willing to actually take the meds if we can get them prescribed or if her OCD will stop her from trying. 
 

 

 

 

Not a medical professional so won't comment on the medication standpoint but I thought I'd add something that might be helpful.

 

Instead of letting her be willing to take the risk, start with showing her other people are going through/ have went through the same thing with the same intrusive thoughts and the same core fear and that she is absolutely no different in being able to get better just like everyone else.

 

It's worthwhile too being aware of OCDs logic games. "But this time it's different" or in regards to others managing to get better "but you are different, something bad really will happen if you don't do everything you can to prevent it". These are common trip up games that people with OCD can get stuck with if they aren't aware and mindful of it.

 

Taking the risk is terrifying. There isn't an easier way of saying it. Not doing compulsions feels like everything you are trying to prevent will suddenly come true as the feelings of anxiety and uncertainty become overwhelming but just one little crack in OCDs logic with ERP can make the whole thing fall apart. 

 

She doesn't necessarily need medication to recover though for a lot of people it can be helpful. I'd also be making sure that she would want to take it and is well aware of the side effects of SSRIs and other medications before starting it. It's worth pointing out that if she doesn't learn through therapy how to deal with OCD then if she ever did come off the medication without having learned how to deal with it, her symptoms may worsen.

 

Unfortunately, the waiting times for therapy are simply just too long and they need to be improved drastically so that anyone who needs therapy can get access to it in a month instead of 2 years. However, that of course isn't the fault of the psychologists and psychiatrists.- the ones that know how to treat OCD that is.

 

So what can you do in the meantime.

- Show her the forum (look for posts that deal with specifically what she deals with in terms of intrusive thoughts just so she knows there are people out there with the same things going on.

 

- Try starting with self help OCD books. If contamination is an issue, maybe have them in a digital format. Not to plug, but OCD-UK worked on a new FAQ book that goes over a bunch of different things about OCD and I believe that is available in digital format. You can also look at OCD books by David Veale, Paul Salkovskis - both very professionals who are very experienced in treating people with OCD in the UK. There are the conference videos from OCD-UK going over a range of topics too.

 

- A final thing is try not to accommodate the OCD. If she tries to get you or someone else in the family to take part in the compulsions simply refuse and explain that things will not improve if any of you did that and that you want her to get better. It perhaps sounds a bit cold but it makes it harder for OCD to get what it wants. So for example don't be present for when she wants to go to the toilet. Or delay when you appear by 30s, 1m, etc.

 

I don't know if any of this helps but it's just my thoughts on it

 

 

 

[MissPG]

11 hours ago, Holiday23 said:

I feel I am ditto -ing so many of your comments and frustrations. My teenage daughter no longer leaves the house, will avoid drinking so they don’t have to use the bathroom, can’t get dressed-undressed independently and refuses support, she won’t wash, prepare food, won’t use the bathroom without a parent being present and then spends long periods of time doing compulsions, collapsed on the floor in frustration or seemingly doing nothing, but unable to leave and screaming if we try to leave.  The list is growing everyday of the compulsions she performs and she is  shutting down on life. 

She was diagnosed with OCD by a private psychologist in the summer of 2022. We’ve been to the doctors, referred to CAMHS (massive waiting list - 24?months) tried private CBT/ERP therapy. and back to the doctor again to request medication. 

No one is listening!! The doctor is too scared to prescribe and shrugs saying we’ll have to go private or wait for CAMHS; my daughter refuses to attend therapy or believe things can get better; family life is collapsing and unbearable. 

Her fear is that something awful will happen if she doesn’t do the compulsions. She’s unwilling to challenge this or believe that it can be challenged.

Does anyone know whether a GP can prescribe a 15/16year old medication for OCD or does it have to be a psychiatrist? 
 

Can anyone recommend a child psychiatrist? I’m pinning all my hopes that my daughter will be willing to actually take the meds if we can get them prescribed or if her OCD will stop her from trying. 
 

 

 

 

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. 

   

[Holiday23]

Dear DS1 and MissPG

Thank you for your advice. This was the first time I have ever posted on a forum and both of your responses reminded me that we are not alone and there is hope.

It’s hard to distinguish the line between being supportive and accommodating the OCD. 
 

We have had a better day today but steps forward are very minuscule - I need to have the patience and confidence that these steps are progress and accept that there will be steps back too and that doesn’t mean that they invalidate previous progress. 
 

I will investigate self help books, thank you.

We’ve just taken out private health insurance but we cannot use it for 6ths beyond seeking advice.

I’ve been told to remember my own oxygen mask and that is so true for everyone supporting someone with OCD. 
 

Thank you again and I hope that you & your family’s journey through this take a positive turn in 2023. 

 

 

[Lifewillbegood]

Just checking in with the hope things with your daughter are stabilizing 

[Holiday23]

Thank you Lifewillbegood

She has bad days and not so bad days. She is beginning to open up to me which is a good thing but obviously really sad to hear the extent of how OCD is controlling her life. It seems that not only do her intrusive thoughts make her carry out compulsions but also tell her she can’t do things e.g. brush her teeth in the morning, wear perfume, have a bath & wash her hair, wear certain clothes etc. This in turn makes her feel ‘disgusting’.

At present she believes that she cannot override these ocd instructions. I’m trying to work with her to make a chink in its armour and give her belief that she can begin to challenge it. She says that if she does challenge it then she has to do even more things to make up for it.

Another battle is trying to convince the school to give her additional time in her upcoming gcse examinations. Because she doesn’t have the requisite low standardised scores the school says they won’t apply for additional time. However I’ve poured through the JCQ’s document (body that deals with examination access) and pointed out that access arrangements can we awarded to students with mental health issues and disabilities if they significantly impact the student compared to other students. She may not even get into school for the exams but I want to give her every chance I can.

Hope things are okay with you. Thank you for checking in. 

 

 

[DRS1]

14 hours ago, Holiday23 said:

At present she believes that she cannot override these ocd instructions. I’m trying to work with her to make a chink in its armour and give her belief that she can begin to challenge it. She says that if she does challenge it then she has to do even more things to make up for it.

This is a perfect example of OCD and it's games. She may think this now but over time she will realise that the compulsions aren't "fixing anything". The theory A Vs theory B sections of the David Veale book (on the charities main website) and Overcoming Obsessive Compulsive Disorder with CBT (the Salkovskis book) are felt good for covering this sort of thing. For me it's a major part of being able to take the risk.

 

If she does do compulsions to correct it she can do ERP to undo the compulsions 

[Holiday23]

I am at my wits end.

My 15 year old daughter’s OCD has escalated and she is no longer washing, changing her clothes, unable to leave the house for any reason - her GCSEs are this year & she’s unable to get to school or study at home. She will avoid using the toilet at all costs and when she does, becomes so distressed because each stage requires so many compulsions that she cannot possibly do them successfully. She cannot leave her bed independently. She now smells too. She is avoiding eating and drinking and cannot sleep. 
Because her symptoms are so severe she has been placed on a fast-track CAMHS waiting list for support. This is a waiting list of 1 year!

Last night she was shaking uncontrollably and I was worried it was due to dehydration- I called 111 and they passed it on to my surgery and I was told I would have a call back within 24hours. The surgery is closed now & no call back! 
 

Today my daughter has had 3-4 sips of water and had one small wee at 1pm

How severe does a child have to be? Do I have to wait until her kidneys fail to be taken seriously? I don’t want to wait for permanent damage to be done to her body. 

Her intrusive thoughts are so strong. I can’t find a way in to her thoughts to help her. She won’t/isn’t allowed to tell me her thoughts.

I’ve been fighting so hard for her at my surgery, with CAMHS, Children’s services but in a polite, respectful way. I feel so disappointed with myself that I’m so passive and not able to create a scene/shout louder to get heard. I don’t know what to do. It is so unfair that young people are suffering so much. I’m so scared that something catastrophic will eventually happen to my daughter or someone in the family because of the stress it’s putting on all of us.
 

 

 

 

 

[hazel]

Unfortunately being polite and respectful doesn't seem to work does it? Makes my blood boil that you have had no call back.

Personally, if this was a child of mine, I would be off to A&E. She's not eating or drinking. This surely is an emergency?

Just my opinion. 

H.

[hazel]

Although I assume getting her there would be an issue? Could you phone 111 again and explain the lack of call back and urgency?

 

[Lifewillbegood]

12 hours ago, Holiday23 said:

I am at my wits end.

My 15 year old daughter’s OCD has escalated and she is no longer washing, changing her clothes, unable to leave the house for any reason - her GCSEs are this year & she’s unable to get to school or study at home. She will avoid using the toilet at all costs and when she does, becomes so distressed because each stage requires so many compulsions that she cannot possibly do them successfully. She cannot leave her bed independently. She now smells too. She is avoiding eating and drinking and cannot sleep. 
Because her symptoms are so severe she has been placed on a fast-track CAMHS waiting list for support. This is a waiting list of 1 year!

Last night she was shaking uncontrollably and I was worried it was due to dehydration- I called 111 and they passed it on to my surgery and I was told I would have a call back within 24hours. The surgery is closed now & no call back! 
 

Today my daughter has had 3-4 sips of water and had one small wee at 1pm

How severe does a child have to be? Do I have to wait until her kidneys fail to be taken seriously? I don’t want to wait for permanent damage to be done to her body. 

Her intrusive thoughts are so strong. I can’t find a way in to her thoughts to help her. She won’t/isn’t allowed to tell me her thoughts.

I’ve been fighting so hard for her at my surgery, with CAMHS, Children’s services but in a polite, respectful way. I feel so disappointed with myself that I’m so passive and not able to create a scene/shout louder to get heard. I don’t know what to do. It is so unfair that young people are suffering so much. I’m so scared that something catastrophic will eventually happen to my daughter or someone in the family because of the stress it’s putting on all of us.
 

 

 

 

 

Unfortunately I don’t have help or advise to offer. 
My best wishes, prayers and hugs for things to stabilise for the whole family. 
Stay strong!

[Lynz]

On 03/02/2023 at 18:45, Holiday23 said:

I am at my wits end.

My 15 year old daughter’s OCD has escalated and she is no longer washing, changing her clothes, unable to leave the house for any reason - her GCSEs are this year & she’s unable to get to school or study at home. She will avoid using the toilet at all costs and when she does, becomes so distressed because each stage requires so many compulsions that she cannot possibly do them successfully. She cannot leave her bed independently. She now smells too. She is avoiding eating and drinking and cannot sleep. 
Because her symptoms are so severe she has been placed on a fast-track CAMHS waiting list for support. This is a waiting list of 1 year!

Last night she was shaking uncontrollably and I was worried it was due to dehydration- I called 111 and they passed it on to my surgery and I was told I would have a call back within 24hours. The surgery is closed now & no call back! 
 

Today my daughter has had 3-4 sips of water and had one small wee at 1pm

How severe does a child have to be? Do I have to wait until her kidneys fail to be taken seriously? I don’t want to wait for permanent damage to be done to her body. 

Her intrusive thoughts are so strong. I can’t find a way in to her thoughts to help her. She won’t/isn’t allowed to tell me her thoughts.

I’ve been fighting so hard for her at my surgery, with CAMHS, Children’s services but in a polite, respectful way. I feel so disappointed with myself that I’m so passive and not able to create a scene/shout louder to get heard. I don’t know what to do. It is so unfair that young people are suffering so much. I’m so scared that something catastrophic will eventually happen to my daughter or someone in the family because of the stress it’s putting on all of us.
 

 

 

 

 

I'm a children's nurse and I think your daughter needs to be taken to A&E to be admitted to a general paediatric ward, where they can ensure she gets adequate fluid and food intake and also get some basic psychiatric support while she awaits specialist CAMHS input. Sometimes CAMHS will see patients in a general setting too rather than have the child admitted to a CAMHS bed.

To me as a children's health professional her symptoms constitute a medical emergency due to her not eating and drinking. I would take her to A&E and tell them everything that you have written above. The priority at the moment is her physical health i.e. not eating, drinking or going to the toilet.

[MissPG]

On 03/02/2023 at 18:45, Holiday23 said:

I am at my wits end.

My 15 year old daughter’s OCD has escalated and she is no longer washing, changing her clothes, unable to leave the house for any reason - her GCSEs are this year & she’s unable to get to school or study at home. She will avoid using the toilet at all costs and when she does, becomes so distressed because each stage requires so many compulsions that she cannot possibly do them successfully. She cannot leave her bed independently. She now smells too. She is avoiding eating and drinking and cannot sleep. 
Because her symptoms are so severe she has been placed on a fast-track CAMHS waiting list for support. This is a waiting list of 1 year!

Last night she was shaking uncontrollably and I was worried it was due to dehydration- I called 111 and they passed it on to my surgery and I was told I would have a call back within 24hours. The surgery is closed now & no call back! 
 

Today my daughter has had 3-4 sips of water and had one small wee at 1pm

How severe does a child have to be? Do I have to wait until her kidneys fail to be taken seriously? I don’t want to wait for permanent damage to be done to her body. 

Her intrusive thoughts are so strong. I can’t find a way in to her thoughts to help her. She won’t/isn’t allowed to tell me her thoughts.

I’ve been fighting so hard for her at my surgery, with CAMHS, Children’s services but in a polite, respectful way. I feel so disappointed with myself that I’m so passive and not able to create a scene/shout louder to get heard. I don’t know what to do. It is so unfair that young people are suffering so much. I’m so scared that something catastrophic will eventually happen to my daughter or someone in the family because of the stress it’s putting on all of us.
 

 

 

 

 

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.

 

 

[Holiday23]

Thank you for reaching out Miss PG. I am so saddened to hear your story. It is unbelievable that our children are so, so poorly yet cannot get the support they need. It’s not right that they become completely and totally broken. I hope that your daughter is able to get some enjoyment from life at the moment e.g. from friends, tv shows and hobbies.

Our daughter has continued to deteriorate over the past weeks.

After many phone calls to and fro, the Rapid Response team at CAMHS are coming to assess our daughter and a psychiatrist is coming too. Our hope is, is that she will be put on to medication which will reduce her intrusive thoughts enough to be able to access therapy. We are hoping she can access intensive treatment very shortly. 

It seems we’re both in it for a long  haul, so I hope you are able to find some time for yourself and that you have a good network around you. 
 

Sending you hope for the future. X

 

[MissPG]

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 

 

 

 

[Holiday23]

Miss PG, I’m so glad you went to your GP about your own well-being and you have a good support network. What you are facing right now is so overwhelming and maintaining enough endurance to advocate for your daughter and maintain your own sanity is vital. You have done and are still doing an amazing job. The support your dear daughter is getting is thanks to you and your determination. 
You summed it up so well when you talked about missing your daughter’s giggles and hugs, and that above all she is a teenager that should be able to have dreams for the future and enjoy time with her friends.

I hope the increased dosage gives your daughter some relief and that you don’t have to wait long for the ASD/ADHD assessments. 
 

Take care Xx

[MissPG]

Thank you for your kind words, Holiday23.

How is your daughter doing? Has she been assessed by CAMHS and provided a care coordinator?

 

 

[Holiday23]

MissPG, no she hasn’t.

They visited last Thursday but my daughter refused to see them.  They are having a meeting today to discuss next steps. 
I am so frustrated! On the one hand they say they are trying not to avoid having to admit her to a unit but on the other hand they appear to be moving at a snail’s pace to do anything at all!