Thanks @Proseccoismyfriend. My dd is doing even better now. When her friend (friend 2) and mum, who had the ED, came to talk to dd on Thursday, dd agreed to eat 3 meals a day. The variety from before isn’t there yet but she’s already expanding what she will eat.
Friend 2 was an absolute Angel pushing dd to eat every last morsel of dinner and even getting dd to eat chips off of her own plate so dd ate even more than I served up! They then went out to the cinema in the evening and dd ate almost a large packet of Doritos (so at least 700 calories in those alone). Consequently dd ate possibly as much as 1500 calories on Thursday and definitely more than she ate for the entirety of the 2 weeks following the traumatising trip to A&E.
Friend 2 then stayed Thursday night and she got dd to eat her breakfast when dd was adamant she wouldn’t. Only half a dry bagel. But it’s a start. She is two years younger than dd, so year 9, 13 and she should be so proud of herself. An absolute superstar.
Friend 2 then left yesterday and another friend (friend 3) arrived for another sleepover a hour later. Friend 3 also had a ED and has a close family friend currently in hospital being tube fed. They went to town for the afternoon and ate at Nando’s. She said dd ate all her lunch and halloumi, something dd hasn’t eaten for at least a month. They then came home for a couple of hours and said they wouldn’t be hungry for a while as they ate lunch late. I inwardly groaned as I thought dd wouldn’t eat her third agreed meal.
At about 7pm the girls announced they were off out for a while to meet a couple of boys they are friends with at the park in the village. A while later, I called dd and said it was time to come back and have their (pre prepped) dinner. Dd said they wanted to stay out. She put friend 3 on the phone, who said she planned to take dd to Tesco for a meal deal and would still be supervising dd’s eating. I told friend 3 I was ok with this plan as long as dd ate all of the meal deal food, ie meal plus crisps or pudding (which friend 3 says she did). Tbh I was happy for dd to eat the meal deal as she will have eaten willingly rather than begrudgingly at home. And she will have had to eat either pasta or rice as those are the only meal deal foods she’ll eat and she has refused both for a few months now. She’s really re-expanding what she will eat again.
From Tesco they walked a couple of hundred yards to the pub with the boys for a (soft) drink. My jaw did hit the floor a bit at this but at the end of the day, she’s eating and in year 11, the boys year 12, plus one of the boys works there so it’s probably not an event for him…. Dd is very sociable, which I think is evident from my posts, and within reason I don’t want to put limits on what she can do. The pub is a couple of minutes walk away from our house and this is the first time she has gone down the pub with friends. The boys brought them back at about 10.30pm. All very sensible.
When they came in, friend 3 and I talked to dd about eating meat again. She’s adamant she won’t. I explained that dd has a history of severely restricting the variety of food she would eat right from a baby and that I had worked very hard over the years to expand that variety. That becoming vegetarian is a way of restricting food and clearly this has proven to be dangerous for her. Friend 3 said she gently read dd the riot act yesterday when they were out.
Dd has the most incredible friends and mums, especially the mum friend offering to support me. I sent friend 3 a text before she arrived yesterday. I presumed out of anyone dd had confided in her and she sent me the most lovely text about what a good mum I am and to never doubt myself. She is so incredibly mature for her age at only 16 and even offered to support me! I feel so validated as a mum right now even if dd thinks I’m the enemy right now. It was my birthday on Tuesday and the friend (I’ll now call her friend 1), who kick started dd’s eating, in my post above got me a ‘for my mummy’ birthday card and calls me her ‘second mum’. All with her mum’s blessing btw. I’ve helped to guide friend 1, especially over the past 18 months or so.
I know it’s to be expected that dd is hostile and withdrawn from me. It’s so incredibly hard and the love and care I have received from dd’s friends has really bolstered me, albeit I won’t be asking them for any real support. They are still very young and have far too much going on, including GCSEs. The teen years are tough ones even without this to add into the mix. I’m disabled and suffering quite badly at the moment with my chronic fatigue as the ED has taken so much of my finite resources. I really don’t have much of a life and my mental health has taken a big bashing over the last few months as I realised dd was reducing food. I was just trying to get her through her GCSEs to then tackle it. But she didn’t last that long.
All in all dd is a completely different person from what she was a week ago, huddled up in bed in winter pyjamas, dressing gown and an electric radiator blasting heat 24/7. I am just so relieved she is eating again. I know this is only the start of recovery and that it’s only been a few days. But the rate at which things have turned around is phenomenal.
It is important to keep going and I’ve seen how quickly these illnesses can take hold. I have decided I’m going to pause the referral to the ED clinic for the moment. Any trip to a medical environment risks dd having a seizure and in her fragile state put her back to stage 1 again. I am, however, taking her to see a cardiologist privately on Wednesday to check the heart murmur, perform an echocardiogram and ecg. I think that is really important before she restarts any sporting activities, which I will get her to do slowly as she is very sporty. I don’t know if dd will have a seizure there. However, this is much more of a protected environment than an nhs hospital and I’m hoping not… or that it won’t traumatise her in the same way.
I’ve also got dd to agree to taking a good quality supplement to fill in the gaps. I have had advice from a friend on that. She said zinc and probiotics. But didn’t talk about iron so I’m going to clarify that one as my (high quality bioavailable) multivit doesn’t have that in it. The probiotics makes sense as the good gut bacteria will have been wiped out leaving all the bad stuff to keep dd alive and zinc is first line. When zinc is low, the body struggles to utilise the nutrients in food.
Thank you so much for reading.
I truly hope that your children will do better and thank you thank you for your support and sharing your stories with us.
Big hugs @PrimitiveSoul and @WoodenTrain. I know my dd has had a much easier ride than both of your boys for the ED. I just wanted to say I do understand the despair. I have had desperate moments, not just about her eating but about dd’s seizures. They’re not epileptic. But cardiological, an overload of the vagus nerve. Her heart stops beating and automatically restarts. Most children stop having them before they start school and dd is devastated at having them as it may have big implications on her life, including impacting on her ability to drive.
It all seemed relatively easy when she was little and protected. Now, however, there are also all sorts of things she needs to consider as well. Don’t drink a lot of alcohol. If you vomit, you will die unless someone puts you in the recovery position (she can’t move for at least an hour after a seizure and vomiting = seizure), don’t go swimming unless you are in a very safe environment and being supervised, do this, don’t do that etc. Added to this, the medical profession knows next to nothing about older children or adults with them and she is left feeling like a complete freak. She cried her heart out over just over a week ago, which is when she finally opened up about it.
Right now, I feel like I will never, ever be able to rest easy until I die. And yes, I will be getting some therapy for me too…