Anyone with a medical background and knowledge of gastro???

[CandyMandyy]

I know this is a long shot, but im hoping I might just get lucky and someone on here knows the answer! 🙏🏼

My daughter is trialing a medication called Erthromycin, to see if her symptoms (nausea after eating) could be caused by delayed gastric emptying.

We have noticed she is eating a bit more since taking this medication. She is underweight, so this is great news.

We are obviously keen to know if this improvement is coincidental, or placebo effect, or that the medicine is actually helping her.

Her prescription ran out which meant, after 1 month of taking the medication morning and night, she had to miss two doses.

Since missing the second dose, she has developed some increased nausea again after eating.

Im wondering if anyone knows if that would be expected with missing two doses, or if this medication has an accumulative effect so would still be doing its job despite the two missed doses??

i hope the question makes sense? We have a review with the doctor but not for another 10 days and I’d love to know if this is a sign the medication is working. 🙏🏼🙏🏼

I should add that my daughters issues have been ongoing for 3 years, hence why I’m so eager to figure this out.

I’m not in any way experienced but I thought Erythromycin was an antibiotic? So I’m assuming they must think she has an infection to ‘get rid of’ maybe?

Hi OP, hopefully someone with more specialist knowledge will come along shortly but erythromycin has a very short half life (approx 1-2 hours) so it is eliminated from the body very quickly - I assume your daughter takes it multiple times a day usually. Based on this it is not surprising symptoms have returned after missing a few doses (assuming it is working at minimising her nausea). I hope her prescription is refilled soon and she’s feeling better asap.

Have they not done a Gastric emptying study ? The antibiotic used for gastroparosis would definitely have a short life , so you would definitely see a return within a few days.

No it's not to treat an infection , it's used off label as one of the side effects can help those with delayed gastric emptying

Thanks both!

@gg9320 - she takes it morning and night. The doctor who has been helping us with this is off on leave so I managed to speak to one of the other doctors who has given us another prescription for the medication, so we can continue until the doctor reviews. I was keen to do that since she has been doing better.

From Googling, I don’t think erythromycin is a medication you can use long term, so I have no idea what the doctor will want to do next. 🙈 But in the mean time, I am so happy to see my daughter eating more!

We tried, but unfortunately my DD didn’t eat the full omelet that she had to eat for the study to be accurate. The results were clear for delayed gastric emptying but they wanted to trial the medication since the substance in the omelet wasn’t fully consumed! 🙈

It sounds like it was working and now she's run out her symptoms are coming back.

Erythromycin is an antibiotic. It gets used in gastro as one of it's side effects is pushing food along the GI tract quicker - most people hate this side effect as they get cramps and diarrhoea. However if you have delayed gastric emptying it makes it more like normal.

From your story, she gets better at eating while on it and almost immediately feels sick when off it. So yes, likely delayed gastric emptying and the drug was working,

DD has had so many tests at this point! 3 years in. It’s been a long and difficult process.

when the nausea first started, it was very severe! A scope showed she had osophagitis (sorry I think I’ve spelled that wrong), gastritis and that the valve was open which should block stomach acid from coming back up.

Omeprazole made a huge difference to DD’s quality of life, but some nausea still persisted. She had a PH monitoring test done and it has been shown that the acid is fully neutralised by the omeprazole. So the remaining nausea isn’t from acid reflux.

They have also referred to CAMHS because the specialist thought she could now be hyper aware of sensations coming from her stomach as a result of the prolonged discomfort. They said that this can occur in people who have had a long period of pain/discomfort from an organ. They just feel all the sensations that your average person wouldn’t be aware of and thought a psychotherapist could help with this. But in the meantime, this Erythromycin seems to be making a real difference!

@AnnaMagnani thank you! If this solves her issues, it’ll feel like all our prayers have been answered! It’s affected her every day for such a long, long time now. I just want her to get back to living life, care free! ❤️

I do hope you get some answers. I have not been able to eat properly for 4 years so I understand how she cannot manage the Omlette. Fortunately I now have a diagnosis. I wish your daughter well.

I'm not a medical professional but have extensive experience with bowel issues and the medical profession. Be very very careful with CAHMS or any suggestion at all that this is all a mental health problem. I have witnessed this so much in hospital. Young women being accused of MH issues when there's a problem with motility ( movement of the gut).

When I see posts like this, I immediately think Ehlers Danlos Syndrome. I have this. It's a genetic conditions which causes hyper mobility but can impact you internally and often young ladies have problems with the motility of their bowels.

A gastric emptying study is key. I had the swallow camera test. You swallow a small pill which is actually a camera and they measure time to poo out as well as take pictures throughout.

Because motility issues don't show on scans, the default to MH is huge and you must not allow that to happen.

Ask about the camera pill test.

There's an expert in London who knows all about this. But it is very expensive.

The erothromycin is an antibiotic but I'd not heard it could help bowel stimulation.

There are special formulation drinks that can help if absorbing nutrition and eating becomes problematic. It's Elemental 028. It's absorbed at the highest level of the digestive tract and gives your bowel a rest.

I can almost guarantee they may try fob you off if you get a bad gastro. The CAMHS referral feels a bit off. The problem is not the fear loop that has been set up but rather the discomfort etc from the original organic problem. You must be firm

Thanks for the info! Every day’s a school day!😁

I think I’ve had it for acne before so didn’t know much outside of that.

i also read the OP and thought of Ehlers-Danlos…

hope things improve for your DD, OP!

Sounds like a long, difficult time OP. How old is you DD?

@Tittat50 I share all your concerns about the CAMHS thing. The specialist told me that none of this at all is in her head. The explanation I was given was that, when your body experiences pain from an organ, the organ sends a signal to the brain. The brain knocks on a door in the brain and when the door opens, you feel the pain. She said that when that process happens so many times, the door can be open and stay open. They thought there is a chance this is what has happened to my DD and that was the reason behind the referral for psychotherapy. This specialist was in another country, but we have since moved to the U.K. and so the referral has been sent to CAMHS, who I’m concerned aren’t quite the right people for this.

DD is 11… it’s been going on since she was 8. 😢 It makes me so sad for her. I downplay the whole thing because it’s really important she is resilient through this, but then it does upset me what she has had to go through, and not knowing how long if ever it’ll be fixed. That’s why I’m so pleased to see something making a difference!

@CandyMandyy don't fall for that nonsense. Their explanation is smoke and mirrors. Be very very cautious of any attempts to diagnose something called FND. It's being dished out like sweets. They blame all sorts of problems on this. You have to argue back. The focus on MH is so wrong.

Definitely pursue this swallow camera test. I was fobbed off severely until my bowel perforated and I was in hospital for months. They will try convince you of anything to close the case I can almost guarantee that in this climate.

Oh that’s good to know!! I will also add that the severe nausea was put down to anxiety for quite a while at the start before anyone would test for any medical cause. Not even a blood test for months, which I had to fight for. It’s been a long road of fighting to get this sorted for her!

Have they ever given her Domperidone? My DC has it for many many years due to severe reflux as it speeds up motility. If she can’t carry on with the Erythromycin long term it may be worth trying. It just meant annual ECG’s for us as there is a very very small chance of heart side effects. The study found the issue in the elderly though so it’s just done to be extra careful in children.
I’d definitely try to get them to look for EDS as well though. I hope you find some answers and she carries on improving.

No, she hasn’t tried that medication. Will ask the doctor about it. Thanks for the suggestion.

Ive just googled EDS, and some forms can be very serious. Quite scary to read! 😢

@CandyMandyy it could be all sorts so if there's no indication of hyper mobility don't think on that. For many people it's no problem for them having EDS. Many don't even know they have it.

You've probably seen vascular EDS which is life threatening and what has scared you. It's the much rarer type so unlikely.

Domperidone has very strong side effects for me. Go slow if she struggles with side effects.

DD is definitely hypermobile. Although hasn’t been diagnosed as such. I have mentioned it to the GP before. She does get sore knees sometimes too. So it really could be EDS.