Non-verbal son with GERD/not able to eat anything!!

[Wilburbug]

Please can someone with experience of gerd in their child help? My 8 year old son has quite severe digestive problems and has suffered from constipation for years. In the past couple of weeks he has started experiencing terrible pain as soon as he eats. It only takes a couple of spoonfuls, even with liquidy food like yoghurts and soup, and he doubles over, crying in pain. As a result he is losing weight and sleeping lots. He is drinking plenty however. The paed saw him in AandE and said he was constipated and we needed to increase his meds to clear it. We did. A week later and he is eating less and still in pain. Over the phone, another dr prescribed him ranitidine and suggested reflux. This makes sense to me and seems to fit but he has had 3 doses so far and is still not able to eat. He did seem mildly better with breakfast, 8 spoonfuls but the pain seemed to subside quicker. I just need reassurance. Shall we perservere with ranitidine for a few days? Does it normally take some time to improve things? And does this even sound like gerd? He isn't sick after eating, just in terrible pain, and this has only recently started ( coincided with his winter antibiotics starting again, this may not be a coincidence I know). It is also worth saying, he is sleeping fine at the moment. If he does have gerd it isn't keeping him up.

I am desperate for reassurance, he is getting even thinner than normal and is not himself. I have been in close contact with the drs and the children's ward at our hospital. They seem happy as long as he is drinking plenty :(

Thanks in advance

You need refered to a specialist to invesitage. But in the mean time ask for the higher does of rantitadine and then ask for omeprazol as well (I take both by the gallon load) bucastem also to help with this sickness. GERD really is awful at its worst, poor love he is.

Reflux & constipation are often linked to diatry in tolerances, dairy is the first most common, but soya & goats milk/sheep's milk have similar proteins that can cause problems. Wheat & gluten are the next on the list that causes problems. Then there's eggs/night shade veg etc. As it's so bad i'd be inclined to go straight to a total elimination diet to cut out any risk (under medical suppervision, with a plan to reintroduce carefully in future) The oesophagus gets damages by the acid coming up, so Meds will still be necessary to treat that to let it repair. & it might be worth asking about supplement in the meantime, like fortix or feriglobin. Check all this with gp & dietician though.

Thanks for your advice. His paediatrician is also a gastroenterologist and he has been seeing my son for quite a while to try and help with the constipation. We are pretty confident it is not down to intolerances, his syndrome means he has very low muscle tone which is responsible for most of his issues, probably including any reflux if that's what this is. His stomach muscles, digestive tract and everything are all affected by this low tone. It is something I will mention when we see him though.

I am more concerned really that it may not be reflux at all because he only has the pain when eating. He can't speak so it is hard to spot what is happening with him. I wondered if any other children had just that as their main symptom? or how any other non-verbal children conveyed their symptoms for gerd? Thanks

Reflux can be extremely painful and may not be evident(silent reflux). It can make the throat v ulcerated and sore. I have 2 that have it and older ones behaviour deteriorated badly when he was taken off his medicines . Agree omeprazole is effective with my child.
Also as you say poor muscle tone can cause all sorts of issues with eating and pooing etc. Both of mine are tube fed and need movicol etc to get it out the other end.

My children only had it as babies and toddlers. It took me being on ted diet plus omeprazol & zantac whilst feeding them plus them being on the same diet plus Meds

But, I also have hypermobility syndroms, & have ibs/constipation/acid reflux & whilst they are part of the poor muscle tone that goes with hypermobility the Ted did help somewhat also, I'm not intolerant in terms of tests & I am normally fine if I have some diary etc but too much & I need a free period for a while again. Too much salt/sugar/grease causes the same problem.

My kids are mostly fine, but one gets flare ups if she has milk, other dairy doesn't set it off but milk will. It's very tough with older kids because sensory issues limit what they will eat.

Sr is mostly in visable so could be happening &,not obvious, but does damage the oesiphagous. Zantac helps the acid go back down easier (&has two doses so can be given at the higher one) but omperazol cuts the acid so it doesn't come up so the throat gets to heal again. It does mean nutrients arn't absorbed in the same way though so anemia is a risk, but not keeping food down causes that anyways.

Has your consultant tried domperidone? My kids had that too as I have but from what I understand drs don't like to prescribe it now as it's risked to increased chance of heart conditions when older- but it works by helping the stomach empty out quicker, basicly helps the muscles do their job. & buca stem plus others can help with the sickness itself. All these can be taken together, & can allways be decreased when acid levels are under control.

The thing I found helped me way more than Meds or diet, is a supplament called bucastem, it has to be ordered from abroad &,is very woo for me as I don't touch that kind of stuff normally but it helped a friends reflux baby who wasn't coping & works v well for me. Magnesium is also useful for helping with muscle function to some extent, maybe not massively but I find some small difference.

Your son's consultant has a wide range of other Meds to try so good luck with that

He could have a hiatus hernia if he has very low tone. It really needs fully investigating with an endoscopy.

This might help regarding assessing pain:

w3.cerebra.org.uk/help-and-information/guides-for-parents/pain-in-children-with-severe-intellectual-disability-a-guide-for-parents/