AIBU to cancel my daughter’s CAHMS assessment??

[CandyMandyy]

My DD has been having medical issues that have caused her to experience severe nausea after eating. This has been going on years and does seem to come in phases. She is taking medication for acid reflux which has helped but hasn’t completely cured her nausea.

She was referred to CAMHS as the doctors believed that she may have become hyper aware of sensations coming from the stomach, as a result of all the discomfort she has had in the past. Apparently this is a real issue that can happen in people who have experiences persistant discomfort from an organ.

The CAMHS team (eating disorder clinic) want to see her as her weight for height is far too low. However, we have started her on a medication for delayed gastric emptying and seem to be seeing her eating increased portion sizes, which is just such a relief.

CAMHS have just sent through some questionnaires that she has to complete before the appointment. There are questions on these forms that I think seem very unsuitable for my DD’s situation and I’m concerned that they could even plant seeds. Things like “have your eating habits made you feel ashamed of yourself?” and “how unhappy have you felt about your weight?”, “have you felt fat?”.

I understand the reason for these questions being on the forms, but she is 11 and is definitely not suffering from an eating disorder. CAHMS were confident of that when we had our telephone consultation.

DD appears to be having some success with this medication. I’m wondering if the right thing would be to postpone the CAMHS meeting, and potentially cancel depending on how things progress (if she gains weight and her symptoms subside). I obviously want what’s best for my daughter, and that is at the forefront of my mind, but I’m wondering if seeing someone private would prevent her from needing to answer all these questions that just aren’t relevant to her and could be possibly triggering.

I’d be so grateful for opinions and advice. I also hope I don’t sound ungrateful for the work the team at CAMHS do. I just want what’s best for her and want to do the right thing.

^This.

Check out reviews for CAMHS in your area - try and find out if any use. Quite honestly, we found CAMHS absolutely dire to the point of downright dangerous (our contact was nothing to do with eating issues)

We experienced very few appts. Appts cancelled at short notice. Wanting to prescribe anti depressants to dd who had no diagnosis of depression. And then discharge out of the blue. Got 3 appts in total over 4 months following dds overdose. Then discharged and left with nothing.

If CAMHS in your area is this bad, i would cancel.

I wouldn't cancel.
I'm not saying this is your dd but I wish I knew this when my dd started struggling with eating and I might have picked up signs of ED sooner.
My dd started with what we thought were physical symptoms that meant she had difficulty eating at 12 yrs old.
It went on for a year with many investigations and medications with some improvements always followed by set backs.

By then the eating disorder had set in and she was extremely difficult to treat.

We tried the maudsley method for 6 months at home until a sudden set back and total refusal to eat. She was in hospital for 10 months, and years of recovery after.
She was also dx with ASD at this time.

ED is insidious and sneaky, my dd struggled with the lies and deception she was forced by it to tell for so long.

My point is to be open to possibilities as scary and impossible as they might first seem, if it is ED the sooner it's recognised for what it is the better chance of recovery.

Just adding to the awful cahms experience... We also hideous time with cahms for autistic duaghter ending in no treatment and she didn't want to speak in the first session. Er she's autistic....

It was the lowest point ever in my life to have a suicidal teen and I'm still shocked at the approach they (eventually) took. Unbelievable.

The whole thing did more damage than good I was j shocked how bad it was.

It's ridiculously hard to get an appointment with them so don't expect to get it again if you cancel it .

Other than that they are pretty useless anyways in my experience and we went private because of it

Also having read some of the replies now, my experience of camhs was mixed.
Rt first they treated my dd for food anxiety despite me feeling it was more intentional.
I had to do my own research into EDs and push for further involvement from a psychiatrist to assess her with ASD and the ED.
However after this I found camhs support invaluable, even when dd was in hospital they continued support, and for two years afterwards.
I don't know what they are like now, this was a while ago.

I’d be tempted to read the questionnaire to her and just skip the questions you think may plant seeds. That way you get an accurate reflection on everything else. Unless you think she wouldn’t answer them honestly I guess? I think I would want to take her to the appointment like everyone else says about waiting lists etc.

I'd just call them and explain the issue, then complete the other questionnaires with your DD but leave out the ones you think it's not appropriate for her to answer. Then explain at your appointment with the clinician 1-1 why you did that. Any decent MH practitioner would understand.

This.

I allowed a service to discharge my daughter- they had acknowledged in the appointment that wr may be back in future years but said then was not the right time. The "right" time came along about 2 years later- and we are now on a 3 year waiting list.

I definitely take the appointment and make sure you stay on their books for an annual contact point until you're totally sure that you don't need them, just in case there are anxiety issues underlying could be contributing.

I had a recent assessment for my 9 year old DD with CAMHS (anxiety/OCD, though, likey related to undiagnosed ASD). The practitioner I had was shocking, she told my child that isn't it good that you don't hurt yourself and proceeded to tell her about a child with an eating disorder she has seen previously. In the end they refused any help on the basis that she wasn't suicidal/self harming.
I was disgusted with the whole experience and the misinformation she was feeding me in order to try and push us elsewhere was crazy. It honestly felt that they didn't have my child's interests at heart and that they wanted to push the issue on to anyone else such as school etc to resolve.
They are incredibly under resourced and my experience isn't necessarily reflective of the whole system, but I completely understand your reticence and concern about putting ideas in to her head as I had the exact thought after the practitioner was so inappropriate with DD.

It's not likely you'll be able to postpone the appointment to see how she progresses with the meds, if you can pay for a private appointment, I probably would as my experience left such a bad taste.
DD had terrible life impacting phobias regarding various things and I have done a lot of work over the years and her confidence and resilience has increased massively which has made her so much braver and overcome her phobias. I'm not saying your DD's issues with food are a phobia but might be worth a look, I had some success with "timid to tiger"

I wouldn’t cancel the appointment, just to be on the safe side, but I wouldn’t fill out the form and explain why at the appointment.

OP, I agree with the proceed with caution approach.
Don't read out the possibly triggering questions to DD but don't cancel the appointment, and perhaps delay it to see how she gets on with the meds.

We're in a similar quandary with CAMHS. After two years of wait to be seen for an ED she finally got an appointment when things took a turn for the worse and is now having treatment. It has helped to a point, but it's now causing more anxiety. DD has ASD and I'm not sure the approach is suitable for her now that she seems over the worst. But I am scared of pulling the plug because it would take years in the waiting list if she goes downhill and needs CAHMS again. It's very hard to know what to do for the best!

I’d keep the appointment with the state of the nhs/camhs. You don’t want to be in a situation where you cancel/rearrange, they discharge you & you’re waiting ages to get reassessed.

@CandyMandyy I wouldn't cancel. If she doesn't have an ED then it's possible they'll suggest passing her to the main CAMHS team rather than the ED service but they still need to assess her.

It might be that she will benefit from some support around managing her anxiety around food/feeling sick.

I understand the fears around the questionnaires but mentioning things on a form won't give her ideas just like asking a child if they self harm won't make them want to. At her age she knows about body image and eating disorders I'm sure.

If you really don't want to do them with her then don't but please don't cancel completely.

My experience with CAHMS is that it's as helpful - or unhelpful - as the person you get to see.

One doctor - fab. Down to earth, open, listened. Was realistic about what she could and couldn't do to help.

Another doctor. Jargony, narrow, didn't really listen. Trotted out platitudes. Did nothing helpful.

I'd keep the appointment, but on your own terms. Explain the problem with the questionnaire. Don't be bullied, but also, don't refuse outright to follow the process.

The important thing is to get your daughter in a room with someone. And then assess that someone.

My daughter knew pretty quickly whether a doctor was going to be any help - and we saw many of them, in various hospitals and units. Some, I have to say, were completely inept. On one occasion, my daughter came out furious and weeping. "He didn't listen to anything I said!" She was right.

I agree with this post.
I think leading your daughter down the path of ‘mental health problems’ will make things more complicated

But what if it is mental health problems? It is a reasonable possibility.

Obviously I only know what the OP has told us and she has said it’s medical. I just hope she isn’t being palmed off.

Incidentally, I have a dear friend with an ED. Getting therapy made her worse. It was on the NHS, and all they did was tell her to eat more and to keep a food diary. That was it. No strategies to help her improve her relationship with food or her self esteem/image of herself. Just told to eat more. All the extra emphasis being put on her diet actually made her worse, not better and she didn’t end up being able to do the food diary so they told her they couldn’t help her and terminated her treatment.