15yo dd has lost so much weight, I'm worried

[Ddhealthworry]

As per the title really, she has been feeling sick every time she eats anything sweet for a while now.

She has lost probably about 2-3 stone in the last 3 months (I don't keep scales in the house so not sure exactly).

She is eating, definitely, she isn't making herself sick, I'm 100% sure of that.

Her mood is quite low, she is really pale, the weight loss is very concerning, she feels sick when she eats anything sweet, she has absolutely horrendous periods, but has been on the pill for around 9 months (could this be the reason for the weight loss).

We are waiting for some blood tests to come back next week, but I have stupidly, spent the evening googling and am now terrified.

I'm hoping the test comes back and actually finds something, as mad as it sounds, just so it can be fixed, if it shows up with nothing then where do I go from there? What further tests should I be asking for.

Any help or words of advice or thoughts would be so appreciated.

Crohn’s - Definitely worth getting checked for this. Symptoms sound like what I went through and everyone thought it was an eating disorder.

I know you are ruling out an ED but I used to get sore ribs from vomiting so just to mention that here. Like others I hid the ED like an alcoholic/addict hides addiction.

Yes I was about to type the same thing. I’ve struggled with bulimia since I was 18 and I would always get sore ribs from it. My parents and house mates didn’t know, and even after my parents knew they didn’t know when I was throwing up in their house. It’s very secretive.

Pain around the ribs is also a symptom of IBD.

Haven’t read the full thread but have you checked her neck/collarbone for any lumps or swollen lymph nodes OP? I see a lot of lymphoma awareness going around as this cancer seems to be a bit more common in young people and one of the symptoms is unexplained weight loss. I’m sure it’s not that, but worth checking.

@Ddhealthworry hi, how is your daughter? Any good news? 🙏

Thank you for asking, the coeliac test came back fine, still waiting for a scan, and I should be getting the auto immune tests back this week.

She is still waiting for a scan, and they are talking about a colonoscopy soon too.

So no good news as such, no bad news either. The more this is going on the more frustrating it's getting.

I've been looking and I might just pay for a private MRI scan at this point, see if anything shows up.

I have been keeping thorough food diaries and we are seeing a dietician next week to see what they think.

I'm really worried that nothing will show up at this point, I don't really know where to go, if I had a cause I could sort it, or the symptoms at least, not knowing anything is like torture.

A private colonoscopy would actually be more useful - it will tell you if she has IBD. MRIs aren’t so good on bowels as they are on individual organs and bones. (Speaking from experience). However MRI would be good for anything gynae such as endometriosis. If you’re in London you can get them relatively cheaply at the place in Waterloo.

I didn't realise that was an option, thank you, I do think she probably has endo.

Unfortunately I'll need to travel around 4/5 hours to go anywhere private for anything, I wish I was in London.

I'll look into a private colonoscopy if the NHS aren't looking speedy.

No lumps or unexplained bruising or anything similar they gave her a CA125(?) test, which I believe is to check for cancer, came back fine too.

It's 100% not an eating disorder, she's been with me pretty much 24/7 and is highly anxious due to this situation. She is so scared, I know it isn't an eating disorder.

@Ddhealthworry sorry I don't have any experience or advice to give 😔 just hope next tests will give you the answers and you can treat them. If money allows please do try to book some private, these waiting times and dragging from NHS side unbearable. Just keep strong ❤️

It's so stressful waiting for tests and test results. Hope you get some answers soon.

Unfortunately I have developed a disability over the last few years and am now unable to work, so money is pretty tight, I will likely try and get a loan for the private tests. It will be well worth it if I find out what's wrong with dd. So pissed off that the NHS is such a shambles. The gp is doing her best and referring everywhere and will see dd at the drop of a hat so I have no complaints there, its just the hospitals that are taking their time.

Vista scans have locations all over the U.K.

https://www.vista-health.co.uk/locations

Thank you, I'm right up in the absolute arse end of nowhere in Scotland, so the nearest place for anything like that is Glasgow, which is an 8/10 hour round trip minimum.

That also means getting childcare for my dd who is has very high needs so it will be a mission and a half in itself.

I'm going to seriously look into it, and see about going private very soon if the hospitals don't get a move on.

I'm just saying this and I appreciate you have said this a few times but .....

It's so sad for your daughter I do feel for you both. Do you have a dog? I used to feed my food to the dog! Then I lied about eating at school for lunch / breakfast / out in town etc.
Plus making up stories about eating at friends houses. My hair fell out I was so ill fainting / thin / missing school and my parents are in the health profession. I used to eat separate a lot in the house and hiding food in napkins then putting it in the bins round town - it was quite easy to pretend I was eating normally - it went on years. Drinking pints of water and brushing teeth regular to avoid the hunger. I'd listen out for night time excercise in bedrooms too - sit ups etc. My mum was like a hawk with food (and been a health nhs professional all her life) but I would still avoid food and I was quite poorly bed bound / sleeping for many hours in the day / missing school - I'd really watch her food. I think maybe she could trick you as I did with my mum and she was all over it / my health and she was OTT about everything. In the end I had those disgusting shakes I didn't have them either - went straight down the sink.

I hope she gets the answers she needs not nice feeling rubbish. But I really wouldn't rule out that it's not an eating disorder as I tricked my parents for years so if I could do it everyone else can too as they were definitely over bearing with food which added to the control element to reduce food even further ....

Just saying hope I'm totally wrong! And I really hope she gets the answers.

Also, if she is with you 24/7 - is she missing school? Is she ASD? Only asking as that fuels the fire to control more .....

At the moment she is doing her schoolwork online/I'm homeschooling her temporarily, she sleeps with me at night because she's so worried something is seriously wrong with her. She really wants to eat normally, feel well go back to school again, and find out what this is. She is happy to go through uncomfortable tests and see the doctor to get to the bottom of what this is. She is even keen for the colonoscopy in the hope something will turn up, whereas I would have rather died at 15 than have one.

Thank you so much for sharing your experience of such a difficult part of your life, and I am so glad that youve found a way through, which is not easy at all, but genuinely dd doesn't have an eating disorder.

I would see if you can get a message to the dietician in as advance stating that you are getting to the point where you are concerned DD could die a as things are taking so long.

They may suggest that she has a feeding tube if her weight gets too low.

It's just so horrible for you all

Has she had her potassium levels checked?

Sounds problematic. Ask if she would like some counselling as it may not be a physical problem but psychological. Keep going with the gp etc but depression can creep up on them.

did they do a full thyroid panel ?

was her iron high rather than low ? Just asking that beacause my friend has just been diagnosed with a genetic disease where the body produces too much iron and has lost a lot of weight .

Thank you, I have talked to the dietician, and she is going to go through her food diary with a fine tooth comb, see what she can spot.

The doctor wasn't able to refer her to counselling, the wait list for CAMHS means she would have aged out by the time she got there, and she was too young to go for the adult services. I managed to access something through her school for now.

This is causing her a lot of distress, which isn't helping.

They did a full everything, her thyroid was fine, and her iron levels were very good/slightly high. Everything else was where it should be, pottassium, vit B etc I really don't know how though, I was fully expecting anemia at least.

Would you mind sharing the name of what your friends diagnosis is please?

Has the doctor done a stool test? A Calprotectin Stool Test will rule out IBD.

We are waiting for the results of the stool tests at the moment.