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Original poster

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

62 replies

mayaknew · 23/10/2019 22:39

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?

OP posts:
Original poster
mayaknew · 24/10/2019 20:41

No hes only been on antibiotics once for an ear infection.

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Original poster
mayaknew · 24/10/2019 20:44

I know Artist however we do manage to keep his bowels moving well now with laxatives.

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Original poster
mayaknew · 24/10/2019 20:46

Dont get me wrong things are better than they were a year ago. However nothing has really changed other the the medicine keeps things from being quite so severe, and we are much better at managing it and catching the early warning signs.

But when he takes a flare up he can be really poorly. And in a lot of pain.

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Csleeptime · 30/10/2019 22:12

Maybe keep a food, activity and symptoms diary. Lot of work but you may find something after a few month's.

Csleeptime · 30/10/2019 22:15

If you have the funds book to see dr neil shah at portland. Top gastro, used to work nhs at GOSH but only private now. He worked wonders for our boy, only took one visit. Have a prescription on nhs out of it which really helps.

cheeseandgrape · 30/10/2019 22:24

My son is nearly 6 and pretty much is in the same situation. They did two scopes and found he has 'focal active proctitis' but they're not sure why.. he's seen gastro consultants since he was about 3 :(

HairToday79 · 30/10/2019 23:53

I know Dilkhulk has already asked but has he had tests for Cystic Fibrosis?
It really needs to be ruled out if not.

Rainatnight · 31/10/2019 00:00

There’s a really helpful Facebook group called Movicol Mummies, for parents of constipated kids. Lots of them have had investigations for other conditions so you might find some helpful advise if you post there.

RockinHippy · 31/10/2019 00:15

I second checking if he's hyper mobile. My daughter & me went through a lot of this & we turned out to have hyper mobile Ehlers Danlos. It affects all of the collagen in the body & makes it over stretchy, this included the guts causing something called Gastroparasesis. My daughter had this & it caused a blockage in her intestines, with had a lot of the same symptoms you describe & diarrhoea is the bodies way to get waste passed a blockage. We have fragile skin too, so things like tissues due to constipation are common too,

If you'd have asked me if I was hyoermobile before I'd heard of hEDS, I would have said no, but my family all are, so we didn't notice anything unusual & it isn't extreme.

If he can do the stuff in this diagram, then he needs to see a good EDS aware paediatric rheumatologist & an EDS aware Gastroenterologist

www.google.com/search?q=beighton%20score%20test&tbm=isch

In the mean time, we found turmeric amazing stuff when my DD stomach was at its worst. You can find a recipe on YouTube for "Golden Milk" or try capsules

RockinHippy · 31/10/2019 00:17

If this fits, there's a good Facebook group that I can point you towards that will help you find a good doctor

RockinHippy · 31/10/2019 00:19

Oh & the very paleness etc, make me think B12 deficiency & probably other things too. It's not about good diet, but poor digestion

Perunatop · 31/10/2019 00:21

Is the buscopan doing any good? It seemed to make my gut even more sluggish, but I am old. Just a thought. I also concluded that PPIs did not help long term.

Original poster
mayaknew · 31/10/2019 07:48

He loves the buscopan it really helps his pain.

They asked about joint pain and I told them no so maybe they've ruled out ehlers danlos?

In terms of CF, would he have this without breathlessness?

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Original poster
mayaknew · 31/10/2019 07:52

Hes unwell at the moment not gut related just a run of the mill virus I think. He asked me to rub his tummy last night and I pressed down under his right ribs and could feel a hard lump.

Every time he sees his GP or gastroenterologist they always palpate his tummy and they've never been concerned.

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RockinHippy · 31/10/2019 07:52

I somehow missed the PPIs. PPIs are known to cause problems with digesting vitamin B12, which is a really nasty deficiency. I'll pop back with a link that explains it all, but I think he'd benefit from B12 injections. This would be even more relevant if he is hypermobile as there seems to be a link, even if not, with these drugs on top of gastric issues that also affect B12, I'd be concerned & push for a trial loading dose of B12 to see if it helps.

She needed it for other reasons, but my DDs ongoing stomach issues are hugely improved since she started on B12 injections, it even cured a soy allergy & several intolerances. My stomach is much improved too.

Buscopan made my DD worse too, but she turned out to also have allergic colitis, & it's contraindicated fir colitis. We found the "golden milk" worked as well as the drugs & no side effects

RockinHippy · 31/10/2019 08:14

These links have all of the correct info on B12 deficiency & links & a group link that can help you push fir treatment. I had a fight in my hands as there's a lot of ignorance around B12 deficiency amongst doctors, even though NICE guidelines recognise the tests are flawed. Kids & especially teens need more too. By 12, it put my daughter in a wheelchair & caused bad autistic like symptoms. After a 2 year fight with her doctors, those 6 x B12 injections had my daughter up & able to walk again in under 2 weeks & though she still has problems, not least because they didn't treat her fast enough, which has left her with problems

www.b12deficiency.info/signs-and-symptoms/

RockinHippy · 31/10/2019 08:15

This is a screenshot I sent to my SIL, it mentions Omeprozole , but all PPI drugs cause similar problems

Ds (7) gastro issues, all tests clear - what am I missing?
RockinHippy · 31/10/2019 08:29

They asked about joint pain and I told them no so maybe they've ruled out ehlers danlos?

Possibly in their ignorance, I had a Rheumatologist recently ask me about joint pain as regards my EDS, but I've never really had joint pain related to it & neither has DD, just occasionally from old hyper extension injury sites. It's not really a symptom according to EDSUK either

His change in growth happened with my DD too, she was over the top end of the centile chart from birth (very tall DH) & ended up scraping in on the 25% mark in under 2 years all her peers over took her. She grew 3 inches in as many weeks once she got her B12 injections & several more afterwards. Her boobs literally grew overnight from an A to an E in a scarily short space of time.

RockinHippy · 31/10/2019 08:38

I'm leaving this link here too as it helped swing my DDs B12 injections as her bloods were all in range & her doctors wouldn't accept that could be wrong. Her diagnosis is Functional B12 deficiency ...

www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/causes/

Lonecatwithkitten · 31/10/2019 09:18

Has a biopsy of the inflamed stomach been checked for Barrett's disease not very common there is a team at Addenbrooks in Cambridge who are looking at this. My Dad is part of the study he has all the same symptoms as your son and had them for years before seeing this team.

Original poster
mayaknew · 31/10/2019 09:42

I have absolutely no idea what biopsies were taken they didnt tell me.

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Original poster
mayaknew · 31/10/2019 09:42

Would b12 deficiency not show up in bloods though?

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RockinHippy · 31/10/2019 10:15

Would b12 deficiency not show up in bloods though

Not always, but NICE Guidelines & the NHS ink I left below say that blood can be in range & the still be deficient. My DD became gravely I'll, could barely get out of bed, let alone a wheelchair, she stopped growing, stopped developing & looked like death, every bone in my body was screaming that I was losing her, but because her bloods were in range I had to fight for a trial of treatment. She could stand again after 1 injection, walk after 6, even though certain doctors accused me of FII fir insisting they try it.

The NHS link below explains functional B12 deficiency, which is the diagnosis my DD ended up with, label doesn't matter as the treatment is the same

RockinHippy · 31/10/2019 10:16

It's also not a standard blood test, so may not even have been done. DDs wasn't until I asked

RockinHippy · 31/10/2019 10:58

I meant to add, when DD was hospitalised at a similar age with very similar symptoms, they also initially refused to scan her too. I actually had to get PALs involved to pass her over to the Gastroenterol team as the medical ward lead doctor was awful. It wasn't until she had an ultra sound scan that they realised how bad it was, she had a big blockage of impacted stool that was causing extreme spasms of pain as the body was trying to push it past an inflamed part of the colon that had colitis due to a soy allergy. 10 days of screaming agony on a ward & the doctor tried to blame it all on stress & IBSHmm

Sounds to me like he needs a scan on his intestines

The ongoing stomach trouble, due to hEDS & allergies, plus the ppi drugs on top of this, made an inborn problem processing B12 much worse. Unfortunately we didn't realise then that the B12 tests are flawed, so took the doctors word for it that her B12 was okay, it took a few more years for it to get really bad & become much more obvious. I wish we had known then though, as I think starting treatment ealier would have protected her from some of the problems she still has from it.