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Niamh used to vomit regularly, particularly during or after feeds and as a result was slow to gain weight as a baby. On occasions we used to see her repeatedly swallowing with a look on her face like she disliked the taste/sensation in her mouth. We believe this was food/acid refluxing and pH studies revealed this was the case.
Gastro-oesophageal reflux is a condition where the muscular ring at the lower end of the gullet is abnormally relaxed, thus allowing the stomach's acidic contents to flow back or 'reflux' into the gullet and up the throat.
It can cause severe pain in the throat and chest, and often causes vomiting in little ones.
Niamh and other children with neurological disorders seem to have a particular problem with reflux and it is believed to stem from the fact that their brain cannot control the normal functioning of their stomach's.
Although there are many effective methods of treating reflux in healthy children, the symptoms of this condition in children with complex neurological problems seems to be more difficult to tackle. We started with the obvious and worked our way through numerous and more unusual methods of trying to reduce the discomfort this reflux caused our daughter.
Keeping the child in a permanently inclined position (during and after feeding) is believed to help relieve symptoms simply by sheer gravity. I have learned that a 20cm incline is the minimum incline required to be effective.
In adults, sleeping on the left side has been medically reported to reduce the incidence of reflux but we actually found that lying Niamh inclined on her right side assisted the emptying of her stomach and thus reduced the duration of her discomfort.
- Acid Supressing Drugs - Drugs like Omerazole (Losec), Lansoprazole (Prevacid/Zoton), work by actually suppressing acid production in the stomach. Another drug called
Ranitidine (Zantac) also reduces acid production but by a different chemical mechanism, so these drugs are often prescribed together.
- Anti Sickness Drugs - Drugs like Ondansatron (Zofran) work by reducing the activity of the vagus nerve which is responsible for activating the vomiting centre.
- Prokinetic Drugs - Drugs like Domperidone (Motilium) or low dose Erythromycin antibiotic, speed up the emptying of the stomach, meaning there is less opportunity for
acid to sit in the stomach and reflux.
- Anti Allergy Drugs - In response to allergy, the stomach and intestines can become inflamed, causing vomiting. It is therefore believed that medications that suppress
the body's usual immune response (inflamation) may help reduce vomiting in cases of reflux. Drugs like Sodium Cromoglicate (Nalcrom) and Vallergan (Alimemazine) may
help prevent inflammation and symptoms from occurring. Vallergan has the added property of being a local muscle relaxant which reduces the urge to retch thus
reducing pressure on the gullet muscle hence reducing reflux.
- Antacids like pepto-bismol, alka-selter (sodium bicarbonate) directly reduce the acidity of the stomach acid on contact and others known as mucosal
protectants like Gavison and Sucraflate (Antepsin) have the added benefit of providing a barrier protection to the stomach lining whilst neutralising acid.
As reflux is more likely to become a problem when the stomach is full, it is believed that where possible, feeding a child smaller amounts and more frequently (thus never allowing the stomach to become full) may help.
This is a not an easy option. It may mean a complete lifestyle change as it may involve feeding a child every few hours through the day and night. It is made slightly easier if you have a child who is tube fed as they do not have to be woken to feed - unfortunately you do have to be awake.
If your child is tube-fed and using a feeding pump, it may be that their optimal comfort is taking a small feed and delivering this over a few hours, allowing the child a few hours break then starting again - as I said - this is a lifestyle change and can be absolutely exhausting so it is not practical for everyone.
It is also believed that intolerances to certain components within feeds may lead to inflammation of the gut lining, leading to gastric discomfort and causing vomiting.
There are many different feeds on the market that we tried which exclude specific components and also "elemental" feeds eg. Neocate where components are broken down into their simplest form and are therefore easier to digest.
Diluting Feeds may also help relieve symptoms if it is the components of the feed that are causing the inflammation/irritation but this leaves you with the problem of additional volume to achieve the same nutritional value.
Oral feeding methods often mean that the child receives a whole feed in one go which can aggravate reflux.
We were able to slow the rate at which our child received her feeds by the use of a feeding tube and feeding pump.
Tube feeding can be via a naso gastric tube where the tube is passed up the nose, down the gullet and into the stomach, or a gastrostomy
where the a tube is surgically inserted through the stomach wall.
The stomach is not the only end point for delivering feed and in children with particularly difficult to manage reflux, the tubes can be passed
further down the food canal into the jejunum or duodenum.
This can be done by either passing a naso-tube via the nose, through the stomach and into the intestine using a
technique called "video fluoroscopy" or for a more permanent tube, via an existing gastrostomy site called a G-J
tube (gastro-jejunal).
We found that the naso-jejunal tubes would become displaced fairly easily so we were very relieved when Niamh
reached 10Kg and was big enough to have the G-J tube inserted - This dual-port tube changed our lives and
our little girl's. This tube also allowed us to release uncomfortable air from Niamh's stomach whilst feeding her
through the jejunal port - it was brilliant.
By bypassing the stomach and delivering feed to these lower areas, it makes it possible to feed your child whilst keeping their stomach empty thus significantly reducing the risk of reflux.
The only possible disadvantage of having these tubes is that because feed is being delivered into a much smaller area, the rate of delivery also has to be significantly reduced to avoid discomfort to the child. This may make feeding a 24hour a day job.
In a small number of cases where medication has been unsuccessful, Reflux may be solved by a key hole surgical procedure called a "fundoplication" in which the gullet muscle (oesophageal sphincter) is strengthened by wrapping it round itself and tightening it.
Niamh had two of these performed but she was still able to vomit, so they do not work for every child.
Another procedure that may help reflux is the widening the sphincter muscle that allows digested feed out of the stomach and into the intestine. It is believed that this may assist in stomach empting thus reducing the volume in the stomach that could be refluxed.
This can either be stretched or surgically widened using a procedure called Pyloroplasty.
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