AIBU to want help for my Daughter?

[Otherwisehere]

I've changed names because this is quite outing, and apologies in advance for the long post.

About a year ago my Dd started having trouble swallowing food, this has now led to her not eating any solid food for over 6 months now. She just about tolerates milkshakes but struggles with ensure. She was very overweight/ obese when this all started but she’s lost so much weight she’s now in her normal BMI.

She’s had an endoscopy and barium swallow both came back clear so They’re now saying it’s functional dysphasia.

She called the GP yesterday (we were both there) as we’ve heard nothing for over a month and DD is feeling very unwell, dizzy, tingling hands/feet and chest pains. The GP said they’ve referred her to the psychologist but obviously there’s a backlog, there’s not a lot else they can do until DD is underweight, as at the moment she’s not considered at risk? She explained how unwell she was feeling to be told she just needs to eat - She can’t swallow, it’s not that easy! She asked for blood tests so we can see if she’s vitamin deficient and the GP said she’d do them but nothing would be done about them anyway. GP then said, Don’t worry, she sees this all the time in anorexic girls - She said to her she’s not got anorexia the GP said I know but it’s pretty much the same.

Dd has lost another 6 pounds this month she’s dropping weight rapidly, she doesn’t want to, the whole family is terrified as she’s wasting away before our eyes, but I don’t know where to go from here. Aibu to want help for her, to not want to wait until she’s underweight? I don’t know what to do or where we can go?

The poor girl, I can’t imagine how stressful this is for her to live with.

Has she had her thyroid checked? I had a horrid uncommon thyroid condition a year ago that felt like something in my throat/couldn’t swallow etc. I was treated for reflux, anxiety for months before they finally did an ultrasound and found a nodule and my thyroid was massively swollen. I felt so unwell for such a long time, shaking, chest pains, half my hair feel out........

Are you in a position to go private? Maybe get her seen by a specialist a bit quicker?

Ask for a referral to an endocrinologist. I had a lot of these symptoms and went on to be diagnosed with Addison’s, hypothyroidism and lupus. The standard blood tests won’t pick those up, particularly lupus and Addison’s. (Addisons needs a morning cortisol blood test).

So is gp doing full blood screen?

If shes having chest pains again then I'd take her to a&e

Yanbu. My ds has rumination syndrome which means he often vomits after meals. He doesn't have it severe enough for anyone to do anything about it though so he just has to put up with it.

Thanks for the replies, there's some good ideas to work with, it's just about getting them to listen to us.

We are now considering going private, but it's a last resort.

As for what blood tests? I honestly don't know, the GP was reluctant to do any and the form is sent directly to the hospital where the bloods are done.

I think it's just more infuriating because they've focused purely on the gastro side and not considered anything else and now she's just getting worse and worse - sorry slight rant!

elliejjting I'm so sorry to hear you're going through similar

YANBU, your GP's response is dreadful in so many different ways.

I completely agree with Hankunamatata that with those symptoms, I'd consider A&E. I hope you and others can get better support soon.

You've likely already tried this but just in case: - coming from the perspective of an entirely different medical issue that resulted in milkshakes being just about all I could get down (resulting in nutritional deficiencies that caused a few of what you're describing) - have you tried different types of vitamin powders in milkshakes? Ones from the chemist like Meritene which can be mixed into any type of milk helped me when the ready made ensures and similar were too much.

I was thinking it sounds like achalasia but that probably would have been noticed on the endoscopy/barium swallow.

Make a complaint about the GP
Present at A&E
How old is she?

Some Speech and Language Therapists also deal with swallowing difficulties. As well as heeding all other advice already given, could you make an urgent appointment with them also?

BiBabbles We've been to a and e a few times unfortunately, that's what triggered the barium and endoscopy nothing to do with the Gp. But we've not tried meritene so I'm going to look at that, anything that will help!

BlankTimes Thanks, I've looked into this as well, a lot in my area seem to focus on children but I've found a couple of numbers to give a ring and see if they can offer any advice

What age is your daughter?

If you DD was obese previously then it has to be considered that she had/has an eating disorder.... a very basic level for your daughter, food had/has a 'relationship' with uncomfortable feelings.

Are there any times that the problem is less or absent? Like when your DD is alone for example?
Is it 'worse' when certain people are around or is it exactly the same all the time at every part of the day?
If it's getting 'worse' then it may have a psychological factors involved.
Do you think yourself that there is a psychological aspect to your DDs problem?

How old is she?

slightly odd angle, but while you are waiting for more help, things that might help eating:
my dd couldn't swallow for 12 months as a toddler due to damaged oesophagus.

She survived on special enriched milkshakes prescribed by GP. She could also eat anything that melted in her mouth, so became a chocolate buttons fiend.

While chocolate buttons are not an ideal food, chocolate contains a surprising amount of vitamins and minerals.
can you be creative with food?

I know another family with dd with oesophagus problems whose dd struggle to put weight on. She had to eat a lot of hugh fat food for energy, eg cream, cream cheese, smoothies. Can you find high fat, high energy liquid foods, cream, yoghurts, protein shakes etc.

You can also puree lots of food and then put it through a seive, to make it into a liquid food.

If she is swallowing liquids, there is no need for her to lose weight really.

I am suggesting this alongside pushing for more form GP etc

@sadie9

What age is your daughter?

If you DD was obese previously then it has to be considered that she had/has an eating disorder.... a very basic level for your daughter, food had/has a 'relationship' with uncomfortable feelings.

Are there any times that the problem is less or absent? Like when your DD is alone for example?
Is it 'worse' when certain people are around or is it exactly the same all the time at every part of the day?
If it's getting 'worse' then it may have a psychological factors involved.
Do you think yourself that there is a psychological aspect to your DDs problem?

I agree about the eating disorder.

That was my first thought as well OP.

Psychology is a very strange thing OP... This might be presenting as a physical thing, but often psychology can be at the root of things. This is backed up by the fact that the doctors have found nothing medically wrong.

Thinking back to when this first started... Can you think of anything traumatic that might have triggered it? Was someone mean to her about her weight at school? Was there an incident trying on clothes? Anything?

I think you need to push for a mental health/eating disorder referral asap.

Functional means there is nothing physically wrong with her. The problem is that the message to swallow is not getting from her brain to her throat. This is usually related to stress, anxiety or trauma which is why a psychologist is best. She needs mental health support.

One of my boys is the same and has survived on Huel shakes for over a year. He can eat chocolate and soups, and a recent victory has been cheap noodles and ready brek. His started after he choked badly. It's taken him a long time to realise that it's psychological rather than physical. He's working on it and I encourage and celebrate his small victories.

Your poor DD, that sounds awful. My first thought was that this is psychological too, esp. as you say she was obese when this started.

I wonder if she's been terrified of covid, given her size and this is some sort of primal defence mechanism?

@Buttonfm

Functional means there is nothing physically wrong with her. The problem is that the message to swallow is not getting from her brain to her throat. This is usually related to stress, anxiety or trauma which is why a psychologist is best. She needs mental health support.

Actually, recent studies published by York university indicate that functional problems are very likely to be related to long term low grade inflammation which affects the way the brain interprets individual genetic code. Not stress. Not anxiety..... not "conversion disorder" or anything otherwise psychologically linked. Actual systemic causes. You can read the studies yourself, and more research has been green lit, hopefully leading to proper respect and treatment for people with functional issues, instead of "there's nothing wrong, you need psychological therapy"

Please request an ultrasound of her thyroid and voicebox

@Mabelface

One of my boys is the same and has survived on Huel shakes for over a year. He can eat chocolate and soups, and a recent victory has been cheap noodles and ready brek. His started after he choked badly. It's taken him a long time to realise that it's psychological rather than physical. He's working on it and I encourage and celebrate his small victories.

I nearly choked to death around age 12, I couldn't swallow either. I was crying at any meal completely fearful.

My mum got me eating peas or scrambled egg or baby food. It was a horrible stressful time, but having support and gentle suggestions helped me get over it.

The tingling hands and feet sound like she needs electrolytes. Is she able to drink them?

To answer the age question she’s 19.

@sadie9 I understand what you’re saying but she has always been comfortable in her own skin and an individual it’s not an eating disorder due to her weight, that’s an irrelevance, the only reason I mentioned it is because they’re not taking it seriously until she’s underweight which seems madness to me.

@Buttonfm absolutely, you’re right. I’m not arguing it’s more than likely functional and you gave a great explanation but what do we do whilst waiting? Just let her keep losing weight, that’s my worry.

@Mabelface I’m sorry to hear you’re going through similar, but it’s great to hear there might be a light at the end of the tunnel

@ViciousJackdaw have you met my daughter? You couldn’t be more right she’s terrified of Covid

My dd has had periods of not being able to eat, it's triggered by something psychological but after 2-3 weeks it's physical as well because her stomach won't accept food. Last year it took 6 months to get her back to anything close to normal eating.

She was put back on antidepressants (she had be off them for a few months) and we had to coax her to eat very tiny amounts several times a day, plus fortified drinks. She was already underweight so it was very close to being admitted (again).

It's a long haul but it could be psychological origins. My suggestion is to call 111 saying she's dizzy, unwell and can't eat - dd got the help this way, they referred her to an a&e with an emergency psych dept, the emergency team came out to dd. This was during covid.

You don’t have to be underweight to be malnourished.

There are two issues. The cause of the symptoms and the symptoms themselves causing further problems. The GP should be doing more to investigate and manage both.