AIBU To be worried sick about my daughter…

You mentioned her sore knees which made me think of Ehlers-Danlos syndrome which affects collagen production. It can cause systemic issues including digestive. Does your DD have hyper mobility at all? There are non-hyper mobile types too.

@UnderThePressure it's shocking your dd had to wait so long for a diagnosis. @HereMe may need to be quite aggressive in demanding investigations including to exclude gastroparesis. It's rare, but not that rare.

I'm sorry to hear what you and your daughter are going through. I could have written your post work for word. My daughter was slightly older than yours when she first started having symptoms (14) but her low BMI was the first indicator from about age 11.
We went through so many tests with a paediatric gastro, food intolerances, tests for SIBO, celiac disease, had a colonoscopy and endoscopy, barium test etc. This took 2.5 years.
In January 2024, the gastro doctor said that he didn't know what else to do for her.

At this point she was 42kg and 5'9", and very underweight. We had tried Erythromycin, Ondansetron, and metoclopramide without success and took so many laxatives. 🥺 I thought she was going to have a heart attack. She would be asleep all the time and had a grey tinge to her skin. She was also diagnosed with depression.
She missed most of year 11 at school and had to delay college by a year. But thankfully she was referred to Great Ormond Street and the doctor there recommended a gastric emptying study which showed severe gastroparesis, paralysis of the stomach. She's been in and out of GOSH for 18 months having further tests to see how bad the problem is and she also has paralysis of the upper digestive tract too. She has had some nasal tube feeding too.
They think she has some vagus nerve damage which has caused the gastroparesis.
Her options at the moment is surgery, for a gastric pacemaker or continuous nasal tube feeding.
She has just turned 18 though so can't have the op at GOSH and we are in the process of transferring to an adult hospital (prob St Barts or University College hospital).
She sees a dietician locally as well and we've just been told she's grown another inch but hasn't gained any weight. She has been prescribed calorie supplement feed in bottles but really hates them as they make the nausea worse.
I just wanted to say you're not alone, you're doing amazingly just getting to this stage and to see if this could be the reason for her being unwell.
They might say it's really rare, it's unlikely she has it which is what they said to us, but here we are with the diagnosis.
Sorry for the long post, but hope it helps 🙂

That sounds tough going.

It sounds like you’re already there, but focussing on things she can do and enjoy sounds like a good combination with the treatment / solution stuff.

Worth a chat with the dietician on good tactics to get energy up when it’s important to her.

The learning to live with limitations side of things often gets overlooked because the focus is on a cause and a cure, but when that’s not working it’s important to consider the latter too.

Do you both enjoy craft? Mindful
colouring? Coding? Something low energy but engaging.

Hey, just a thought - if medication to help speed gastric emptying is helping, and she has/had ongoing nausea has gastroparesis been looked at?

Have you looked into MCAS? Mast cell avtivation syndrome. It is treated with H1 blockers (antihistamines) & H2 blockers (stomach acid regulators) So if there was an improvement with the omeprazole, it's well worth looking into. There are facebook groups about it.

Is the antibiotic erythromycin? It may be she needs a more powerful motility enhancer. Take a look at the information about gastroparesis to see if there's anything there that's not been tried or might help. The diet tips are quite counterintuitive eg reduce fibre (also recommended upthread by a PP with gastroparesis):

https://en.wikipedia.org/wiki/Gastroparesis

DS had what sounds like the same thing. He had every possible test done. They all showed nothing. It was his appendix. Drs said appendicitis was separate issue and it couldn't have caused all the problems but it's too much of a coincidence. He rapidly returned to a normal weight and never had another digestive issue once the appendix was taken out.

Is she an anxious child? I was - and am an anxious adult - and suffer from terrible stomach issues when my anxiety is bad. Therapy and yoga have helped me immeasurably. Just something to consider, the brain / gut link has been well documented.

Thank you for replying - sorry you went through that, that's sounds horrible and must have been so hard to go through it for so long. Mine tends to be a pain in the right side constantly, stabbing and dull ache - with pain in my back too. Along with bloating and stomach issues - it gets much worse at times but is always there. Yours sounds a lot more intense so perhaps I could be wrong -so hard when you have no idea what is causing it.

@DecidedlyUndecided

Mine was intermittent and would flare up approximately every 6-8 weeks for the 4.5 years, though people used to say I looked a bit sickly and I was pretty skinny. An episode would begin with a non-specific dull ache in the abdomen that I could only describe as similar to period pain but much worse. That dull ache would get steadily worse, then I would get nausea and then start vomiting. I would literally just be curled up on the bathroom floor until the vomiting started to ease then would retire to my bed and lie there curled up. I couldn’t sleep, eat or do anything during an episode. It would generally last 12-24 hours and the next day I’d be pretty wiped out too. When they finally took my appendix out the surgeon said it looked red and really inflamed. Apparently, if I hadn’t had it taken out and had further episodes it probably would have ruptured eventually. Once it was removed I started to look a bit healthier, I gained a little bit of weight and I never had another episode again.

I’m so sorry to hear about what you and your daughter is going through.

Referrals and diagnoses can be a long process but you will get there.

It sounds like it’s still unclear if this is physical or psychological. Are you already taking steps to establish a diet and routine that’s sensitive to DD needs at home and school etc? Some of these you can try yourself with daily food diaries to capture what was eaten(be precise and honest, even about cheeky haribos!), what mood, if periods or illness, etc, if she did any exercise, and so on, so you can determine patterns. You can do this without waiting for the medical professional (but of course consult one before radically altering diets). As some PPs have said maybe try a couple days without gluten, or spices, or onions/garlic, or sweets etc to see if patterns emerge.

Edit - just saw post re dietician.

Have they tested for gastroparesis. The symptoms sound similar to mine. The only thing that has worked for me is very limited fibre. If the stomach won’t empty you feel full all the time and vomit if you try to eat. It may be worth asking GP

I hope you get to the bottom of it soon OP - that sounds really stressful for you both. I've been having some issues lately and know how hard it is to get a diagnosis.

@PeriJane would you mind telling me what your symptoms were? I feel like I might have this currently but I'm finding it hard to get medical professionals to take me seriously.

Has she tried going wheat free/gluten free? Bread/pasta gives me terrible nausea, heartburn and fatigue. Gastro told me to cut out both wheat and dairy.

No help with the stomach issues but how are her iron and ferritin levels?

Might be worth checking as even when they are within normal, they can be right at the bottom of the range.

A liquid version would probably be better given her other issues.

Curve ball here.

Stugeron travel sickness pills have a chemical in them that blocks the brains receptor to nausea. It has been a game changer for me!

I don't have any advice but I know how worrying it is when your child is ill. When my dd is unwell or her asthma is bad it's literally like a dark cloud over me, it's horrible.

Hope she improves soon 💕

Sounds like a food intolerance - has the dietician ruled that out?

Has she been tested for Coeliac?

My dd wasn't diagnosed with crohns disease until she was 30.

She manages it with diet and trial and error. Fobbed off as ibs and digestive issues for decades..

I'm allergic to aspirin / salicylate intolerant, only recently diagnosed after stomach issues for years. Not saying it is this, but for you not to worry, as nasty stuff is easy to find, bothersome stuff less so. They'll get there, just sending a virtual hug.

Did your daughter have Covid? I am noticing a lot of young people have weaker immune systems because of Covid. Things just seem to affect them more than before. Throw in anxiety and any minor food intolerance and it’s very hard. They have ruled out major problems, so try to make it less of an issue ( not easy). Hopefully as she grows this will disappear. Try and stick to a diet with no processed foods and lots of fruit, veg and natural foods.

You’ve most likely already thought of this, but is she eating foods that are good for the gut? Lots of fibre, fruit, veg, fermented food, kiwis etc? Also if she’s on antibiotics then acidophilus might help. Hope she feels better very soon