Support thread 14 for parents of young people with an eating disorder

[Curlyhairedassasin]

New thread as old one is filling up

My son’s has also closed down - wonder if it was the same one Nan? X

#Tooglamtogiveadamn - The Priory Altrincham?

Actually, no need to answer that as it could be outing. Will PM.

Hi all. Just hoping to get a sense of whether our CAMHS team's approach to Olanzapine and anti-depressants is typical. Is anyone's YP on both Olanzapine and Fluoxetine? DD has been on 5 mg Olanzapine, reduced from 7.5 mg just before the summer. She was also started on Fluoxetine just under two months ago and is on 5 mg. The Fluoxetine seems to have slightly improved her mood over the last couple of weeks, although it's marginal; the next step there will be to increase her dosage. The CAMHS team are insistent that they cannot increase the Fluoxetine while she is on 5 mg Olanzapine, so her Olanzapine has just been reduced to 3.75mg. They want to see whether this has an impact on her ED cognitions before upping the Fluoxetine. DD is really struggling with the ED thoughts (she's on a downward trajectory having managed previously to get up to 95% WFH earlier this year) so it feels like really bad timing to reduce the Olanzapine: the earlier reduction from 7.5mg to 5 mg made things harder. I understand why they are saying that they can't change the dose for both meds at the same time, as they won't know what has caused any change in how she's feeling. But I did want to hear whether any YP are on 5mg Olanzapine with a dose of more than 5 mg Fluoxetine, as we're being told that's not possible. It sounds as though the alternative anti-depressant with Olanzapine (if they let her stay on it) would be Sertraline, but the doctor is reluctant to prescribe that because of how hard it is to come off it. Really grateful for any insights.

@VitaLita DD is on 10mg olanzapine. She is on ADs as well. We tried fluoxetine too. We increased the dose a few times but swapped to a different AD now. We never had to decrease olanzapine in order to increase the AD. We tried sertraline first and it didn't work. we are now on Citalopram.

Thanks so much,@Curlyhairedassasin. Are those prescriptions through CAMHS? And would you mind sharing how long your DD has been on Olanzapine for? DD has been on it for 11 months now (max dosage was 10 mg while she was in a day unit) and we're being told it's not normal to be on it for this long for an ED. They are keen to get her off it, but it does seem to help her to some extent and those on it for 'mainstream' psychosis can be on it for years at a much higher dose, is my understanding.

I should add that the doctor said that the sedative effect of 5 mg Olanzapine plus more than 5 mg of Fluoxetine would be too much.

My DD was on olanzapine for 18 months at 5mg before being weaned off it (because she was WR and much improved anyway). So 11 months doesn't seem unusual. My brother has been on it for 20 plus years at a higher dose..... my DD never used anti depressants. But the olanzapine was so helpful with the ED voice.

And surely these 2 meds do different things? Your DD has clearly found olanzapine helpful with the ED cognition. Fluoxetine won't necc help as much with that? Seems odd to me to reduce a drug that has clearly been helping.

@VitaLita We are under the ED team and see the psychiatrist there who prescribes. DD has been medicated for 2.5 years and is 14 years old. DD takes 5mg each morning and evening and we haven't noted any sedative effects as such.

thanks @Curlyhairedassasin and @Lottsbiffandsmudge - really helpful.

@VitaLita forgot to add. We have an annual blood test for DD to check all sorts of things but also prolactin levels (can affect periods etc) as Olanzapine can affect them. So far, we didn't have any issues with the blood test results.

Our psychiatrist has agreed to increase my daughter’s (13) olanzapine dose to 2.5mg daily (was only alternate days before). I think she’s been on it a month now. I think they’re cautious to increase drastically as she is only 13 but I’m hoping this increase will help. She’s just exhausted and drained from the mental strain of everything.

I wanted to say thank you to all the posters last week who pushed me to see that I needed time off work to support my DD. I have been signed off by the GP for two weeks, then we have half term followed by an extra week for my DH when he can be at home. He is seeing if he can work reduced hours after that.

My DD has still not been accepted by the ED service but they are doing additional assessments. I did discover, by checking her tablet which I didn't think she used any more, an extensive search history into the calories of every food she was eating which shows that she was not being honest about the reasons she wasn't eating. She is still denying it now even though I have evidence.

She is eating 3 meals and 3 snacks a day but I increased intake slowly at first because I read alarming things about refeeding syndrome. She was weighed this week and hadn't gained any weight but at least she hadn't lost any more - she lost 7kg over the previous seven weeks. I am now trying to increase her calories more.

She is complaining about pains in her legs. Is this something others have experienced when refeeding starts? I don't know if it's something I should be concerned about.

Sounds like you are doing really well sister. Keep plugging we found the magic plate method and us taking over all control over food worked but they are all different.

Dd was discharged from CAHMs on Monday. She’s 92 wfh and eating her 3 meals and 3 snacks a day without question. Makes herself avocado on sourdough toast after school everyday. She’s deeply embarrassed about her anorexia and desperate to move on from it. Don’t think I’ll be able to relax on this for a while though.

@TheaBrandt1 well done. That is great news. You mentioned before you had a brilliant psychotherapist.
I think my DD might be at a stage where this could be helpful. Do you mind sharing details?

Have DM d you her details didn’t feel right sharing publicly

@SisterMargarettais your dd getting her bloods checked again? Pain in legs could be do with electrolytes being out of sync.

Your dd sounds very classical anorexic so it is mind blowing that the ED team will try and discharge her.

I would fight them discharging her and threaten a complaint if they do.

It’s good your dd is eating and normal not to see any weight gain straight away, the body will be using every single calorie to repair cells it’s been avoiding while in starvation mode.

Are you blind weighing? I am an advocate of blind weighing them unless you are certain they can handle seeing the weight go back on.

Is she allowed to school at 78 percent? What weight to height did they allow to school?

@Pearl97 It's been different each week. At the start of term she was 73% wfh and her weight went down after going to school for 2 days so she was off all the following week. Each week since then it's varied from 2 days up to 4 days but it's only allowed if her weight increases each week.
She's due to hit 80% wfh after half term and they said they'll consider allowing her to do PE. Their suggestion, I didn't ask for it and I'm not pushing anything. She's having a medical check next week so will see the results of that first.
Reading on here it seems other people haven't been allowed to school at a similar wfh. I guess they take it on a case by case basis and attending school is what motivates my DD to eat.

Definitely school is the motivation we need. In fact we’re desperate! Who allowed you back GP or Chams? How much were you under the ED team? Sorry for all the questions. No need to answer if you don’t want to.

@Pearl97 We're under the care of CAMHS ED and have weekly appointments where she's blind weighed and assessed each week.
Her being in school has improved her mood greatly but it does put added pressure on all the meals being sufficient for a weekly weight gain and she also has 3 Fortisips on school days.

We are the same. I plan to ask about school this week, you have given me hope. Thank you xx

@Itsendless do you have a goal wfh percentage? Xx

@Pearl97 We're aiming for between 95-105 wfh. At the moment we're just head down plodding slowly onwards.
She naturally sits arounds the 25th centile for weight so 95-105 wfh is higher than she would be naturally but my focus at the moment is just to get weight on her rather than a specific number.
Best of luck