Intestinal pseudo obstruction / Reflux / Fundoplication

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Hi all, I have a 6 year old son who has had lots of problems since birth, mainly being reflux, his 1st fundoplication was carried out in July 2013 unfortunately this failed and his second was carried out in July 2014 again it has now failed just 10 weeks down the line.

Despite being on heavy meds, Omeprozole, dompridone, alimemazine, montelukast and various inhalers he is still relfuxing, our pediatrician has no clue what else to do and his surgeon wants to perform a 3rd Fundoplication which we are reluctant to do, so we decided to pay to see a private specialist gastroenterologist and he spent time looking over the history and his test results etc and all his symptoms and he's set for doing more in depth tests because he thinks that along with the reflux he is suffering with Intestinal pseudo obstruction.

Although he takes small amounts of food he has an NG tube (we are waiting to see which g tube is best)

Is anyone else in the same boat?

Meant to add he's also allergic to Dairy and all the usual suspects, grass pollen, wasp stings etc etc

My DD1 has very bad reflux and is on nearly all the med's you've listed, she has cp so her reflux is linked to that. We haven't considered a fundo because often they're unsuccessful if the reflux is due to neurological reasons.

How long has your son had the ng? That certainly made my DD's reflux worse. She's had a mini button for a few years now and it's brilliant. The other thing that has really helped is moving off formula onto blended food through her feeding tube.

I've heard of pseudo obstruction but i know little about it. I would certainly be keen for a more in depth look at what is the root cause, we know what it is with my daughter so just have to treat the symptoms.

Reflux is such a stressful thing to deal with for the child and parents, the added stress from surgeries etc is really hard to deal with. Big hugs xxxx

HHS had the NG on and off since birth, we've had what is possibly the worst 'care' team imaginable.
He was due to have another fundoplication next week but despite me and DH putting across our concerns they have not listened to a thing so we paid to see a private specialist who was extremely shocked and concerned that they were prepared to do it again with out all the relevant tests to see why they keep failing and to get to the root cause of the reflux.

The care team have been reluctant to remove the NG and change to a Gastronomy because, well actually I have no idea they just say why change when it's working. However again the specialist we saw said he needs the gastronomy (or something along those lines) because the NG will be making things worse and also he's 6 and extremely self conscious of how he looks, people do stare and it isn't nice for him at all.

He can eat orally and does eat but not enough to sustain his weight. It's all very stressful, just the knowing there is something else wrong but having no idea what it is. Nightmare!

Could you ask for a referral to GOSH? (They take referrals from all over the country and have accommodation if you need it.) DD had major intestinal issues as a baby and had amazing and thorough care there. They treat the most difficult cases so hopefully you would get some answers and a plan for helping your DS. Good luck.

We've been referred to The Royal London to see the same specialist that we saw last week, he seems very positive that he can find out the issues where others have failed, it's just a shame it's taken a lot of money to get there but thankfully now we have been referred on the NHS.

It's been a long and tiring 6 years and I just want him to not be in so much pain all the time.

Hi my DS was a failed fundoplication due to a ? strangely placed stomach, he has CP following meningitis, He too had awful reflux which did not respond to medication.

The problem was solved by having a jejunal tube. It has been brilliant, the only downside being he needs to be fed 24 hrs/day but as he uses a wheelchair it is not a big problem.

Best wishes.