Hello all. First off, it’s a looooong read so thank you for that !
My husband and I are kind of reaching a crossroads here. We are confused , scared of making the wrong choice and overwhelmed with this emotional rollercoaster that we are on. You are all so kind and compassionate and you all understand ! You get it !
Short story , D15 lost about 38lbs from Feb 2019 dr appt to October 2019. She was hospitalised for a week due to orthostatic HR. Fully complied with meals during hospital stay and went straight back to school with supervised lunches and snack. We tried therapy ( 2 different therapists ) which really just made her upset as she felt none listened to her nor had any empathy. ( I agree with her on this )
Gained weight , had some restrictions lifted such as snack with her friends , then lunch with her friends ( only about 1/2 weeks ) and participated in a track practise 2x a week, which to be perfectly honest was not about exercising, and was more about the social part of HS.
At this point she started to make her own meals. Really just breakfast and was eating everything else that I provided.
Then Covid hit and school was online. She started getting up late and not coming down for breakfast and had an weight check , weight was fine but she was orthostatic and met criteria for Hospitalisation, but they sent her home. I have no idea why.
She did very well eating and her HR was restored at the next week appt .
They told her that she was doing really well medically and everything was great. I mentioned ( not for the first time ) that I think she could use more weight , and then went back to D and told her actually she needs to gain weight. This was super confusing to her.
Two weeks after that she had lost 4lbs, which we were all shocked by. They suggested purging and exercising but we don’t see that happening at all We are very aware of her every movement throughout the house and were on high alert for anything amiss
Fast forward 3 weeks till today and she is doing really well. Holding her own again medically and weight wise.
The clinic are not ok that she’s not engaging in therapy / nutrition appointments and said to Husband and I that they cannot continue with us as we need to engage in therapy and nutrition appt even if D does not.
They also told us they have a spot for her on Wednesday at a Partial programme. Heavy on therapy.
So here is the crossroads . Whilst we are grateful for the help that the clinic gave us , we feel that they dropped the ball a few times for us.
We also understand their medical model that they follow but there is no
thinking outside the box for us. And we know our daughter best.
So we are at a crossroads.
Whilst the PHP is a great programme, and has helped
many children , we feel like the therapy part ( which is a huge part of it ) would not be helpful for her at all. We know the kind of person our D is and we feel like it has the propensity to snow ball and push her over the edge, so to speak. Nothing bad , just too much. She has major trust issues and issues that people aren’t honest with her. And I agree with that. I have caused some of it unfortunately.
After clinic today she really opened up about how she has been feeling Keep in mind she knows nothing of what may happen next week with possible PHP.
Husband and I have been literally sick over what to do about this.
We think that we should give her 2 options and involve her in her care.
2. Basically do it on our own
Lay down firm guidelines ... Eat what we provide , engage in therapy , have weight / Ortho checks at paediatrician office. If it is not followed then PHP is a back up , and she knows we are serious. We had a bumpy road in order to get her into Hospital in October. We are not in denial about our journey thus far. We really feel like there is a different way through this for us , it may not for all.
We feel like she deserves to be heard and to have our trust and openness in this. Trust in this is
big for us, without that everything else falls apart.
What do you guys think ?