Ds (7) gastro issues, all tests clear - what am I missing?

[mayaknew]

Ds has suffered chronic constipation form birth. For the past 2 years he has developed these symptoms

Reflux
Vomiting
Nausea
Loose stools
Soiling clothes/bed
Upper and lower abdo pain
Anal fissures
Piles
Lethargy
Loss of appetite
He becomes very pale even his lips

He is on laxatives/ppis/buscopan for all above and creams for his bottom.

He has had plenty of investigations - bloods/stool samples allergy testing and even had scoping done.

But nothing seems to explain his symptoms. What am I missing?

Though I'm not the OP I want to thank everyone for their postings - I will take so much of this forwards with my own son. Sincere thanks.

@mayaknew whereabouts in his bowels did they find the inflammation? And did they say what may have caused it?

Cheese it was his stomach they found inflammation. Apparently his bowels were fine.

I would suggest tinkering with the laxative dose OP if he is suffering loose stools and having accidents. I take loperamide and use the liquid as opposed to tablets as even slightly too much or too little makes a difference, the liquid allows me to manage it as I can dose myself.

If there are no signs of hEDS I would ask for hydrogen breath testing re: fructose malabsorption and SIBO. Long term use of PPI's for reflux can actually cause all sorts of damage to healthy bacteria and gut lining and have caused me all sorts of issues.

Have you tried a (good) probiotic for him? (Symprove as an eg)

Has he had his b12 and iron levels checked? I would request this.

I would also look into the FODMAP diet, if you are waiting to see the dietitian then ideally you can discuss this with them but it is worth looking into to see how his current diet sits in line with it. You will be much better placed with the dietitian and save yourself time if you go having already done a food diary as in my experience they will ask you to do this anyway. Write down all meals snacks and drinks (including volumes) and any symptoms on a daily basis.

Re: fissures and constipation, google 'squatty potty' or consider purchasing one (there are cheaper ones on amazon). They correct your posture on the toilet which in turn corrects the position of your colon to assist with easier passing of stool and reducing the straining that can contribute to fissures and piles.

With regards to the relief of piles, sitz baths can help, or Epsom salt baths.

Mayaknew do you know how they checked him for H.Pylori? Also what ppi is he on? (Though I think from reading elsewhere, they can all be similar)

I had gastritis & it was caused by h.pylori that had been missed in earlier tests. I think I read that they all can give false negatives, some tests more than others. This might be of interest & it's nhs ...

www.wsh.nhs.uk/CMS-Documents/Patient-leaflets/Gastroenterology/5149-4-Helicobacter-Pylori.pdf

Can I also suggest that you ask to be referred to the Inflammatory Bowel Disease Nurse. I found ours far more help than the doctors. With their help I managed to come up with a couple of nutritious things that she could manage to eat & enjoyed. Sticking to these meant that her stomach & guts healed much quicker.

It won't fix it if he has a stomach infection though, but it will help him cope better. Epsom salt baths to up his magnesium is a great idea too, lots of magnesium helps the body cope better with pain & stress signals

Hyper mobility. Ed’s?

The tested for h.pylori via Stoll sample.

He is on omeprazole. He has been on 20mg for over a year but its just been reduced to 10mg.

Definitely look properly at my last link then mayaknew it says on there that Omeprozole messes with the H.Pylori test, so he could definitely still have h.pylori & it needs treating. There are apparently other bacteria that cause gastritis too, so maybe think about if you've been abroad anywhere & look at possibilities he could have picked up there too

Omeprozole & Gastrits both mean he needs B12 though, so that would explain some of his symptoms p, we found low B12 really messes with immunity etc too & made allergies & intolerances much worse. Treating it cured most of it & the rest of it is much milder now

Start elimination diets... That's how I found I was intolerant to gluten (sware possibly coeliac but takes 13yrs worth of damaged gut lining to show evidence)...

I'm intolerent to potato. Took me ages to find out. It could be something like that, something simple that gets overlooked.

There's a lot on this thread.
This is what I would do if I were you:

1. Get a print out of all the tests DC has had since birth. Lots of things have been ruled out already but you don't entirely know what they are.

1. Get a CF test done, especially if you and DP are of Irish genetic background. CF is a weird disease - I have recently discovered that some people are diagnosed as adults.

1. Ask for an appointment with a senior Paediatric Consultant. You need someone who qualified somewhere good (UK, Sweden for example if you are northern European ethnicity but other countries may be more suitable which reflect your ethnicity e.g. Nigeria if you're west African). Ideally this referral would be to a 3Ts hospital if you're not already being treated at one. 3T hospitals are where the people with uncommon conditions end up so it'll be more likely to be recognised there. Any hospital with a helipad for air ambulances should be 3Ts.

1. Write down a list of the specific suggestions on this thread, because they're really good. Some will have been ruled out already by the tests DC has had. You can start going through one by one while you wait for the consultant appointment.

1. It's a long game. You'll get there.

• The ethnicity remark is because I had a friend once who suffered for a year from a dreadful stomach bug picked up while travelling in Venezuela. A series of London hospitals couldn't help, not even the one for tropical diseases. Eventually he flew back to Caracas, checked into the main hospital and they diagnosed and cured him in less than a week.