AIBU To be worried sick about my daughter…

[HereMe]

Hi everyone, Really hoping for a handhold please. I’m on my own and just feeling so down and alone.

My daughter has had medical issues for the past few years that we haven’t quite been able to get to the bottom of. She is 11.

She has stomach issues and has had countless tests. We have a gastro appointment again soon, but I’m just reaching a point where I am just so afraid. I’m trying to tell myself that if it was something serious, we would have answers by now. She has had ultrasounds, scopes, swallowing tests etc. but sometimes she is just so unwell.

I want her to be able to finally enjoy a childhood with this behind her, but we have been fighting to get answers for 3 years. She is on medication which really helps - omeprazole and an antibiotic to speed up her digestive system. But still, she is weaker than her friends, she is struggling with stamina. I’m actually in tears because I just can’t get this fixed. I’ve tried so hard for her. I feel somehow responsible. Maybe just guilt that I haven’t been able to fix this.

I don’t have any family around and I do have friends but I don’t feel I have anyone who truly understands what I am going through, and what she has gone through.

I am always being practical with any issue we face, but underneath, I am emotionally broken by it. I wish I could win the lottery and get her the best medical care and someone who will find answers for her.

I just need to make things better… but I can’t!

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 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

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.

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

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.

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 🙂

@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.

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.