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Esophageal Reflux and OI

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One highly experienced OI Parent's comments on Reflux: 
 is what I know as an RN and foster mom to dozens of medically
complex children. I am also know as the "reflux queen" in our neck of the woods!
Reflux is very common in all newborns to some degree and especially preemies as they are just not ready for the world yet and not developed in more ways then
one. Reflux is simply the backing up of the contents of the stomach into the
esophagus and it can go out the mouth, the nostrils, etc. Children with OI (and
adults) have loose or lax ( for lack of better words) sphincters and this includes the stomach sphincters so they can be prone to refluxing. If it is severe they may develop esophagitis which is an inflammation due to the constant irritation of the stomach contents. There is no one way to treat it but some universal precautions should always be put in place if your child has relux or you suspect has reflux. Always elevate the head of the bed ( I either put a wedge under the mattress or place blocks or bricks under the legs of the head of the bed or crib. Always keep your child upright for 20 to 30 minutes after a feed..a infant seat. You may thicken bottle feeds with rice cereal if your child does not have nephrocalcinosis (kidney stones or calcifications which is common in preemies). A safer alternative to rice cereal as it does not cause or intensify stones is Thick-It which can be bought in any drug store. Pediatric Pulnmonologists are recommending this for preemies with reflux almost exclusively now. The only problem with Thickit is can cause very loose stools in some kids. I have one now that I alternate the cereal with the Tthick-It and it works well for him. Reflux is officially diagnosed by something called a PH probe. They put a tube naso-gastrically down a child and record the changes in the PH of the stomach contents for about a 23 hour period. It is done in the hospital. I had a baby recently with 27 episodes of reflux while awake and 47 while in the supine position. There is also now a really neat thing done with older children called a BRAVO probe. A tiny capsule is implanted in the lower esopahgus under mild anesthesia and the child is sent home wearing a beeper. The capsule transmits info to the beeper and then you turn it back in with your diary in about a day. The capsule eventullay dislodges itself and it is stooled out. I had an older child with one of these and it is much better than sitting in the hospital with a tube in their nose. Depending on the outcome the drugs prescribed in the Pediatric world are Reglan ( helps the stomach empty quicker), Zantac,Pepcid,  Prilosec and Prevacid. You can also safely give Mylanta if the child is extra fussy. I've had babies on all of the  above...In my experience it is something you have to more or less "experiment" with with your GI specialist as no one responds to any one drug the same way. I have had kids who improve on Zantac alone, Zantac, Reglan combo, Prevacid alone and so on. Sometimes it is not easy to sort out. In severe cases ( like little Jake) an operation called a fundoduplication must be done which in essence changes the stomach valve from two way to a  one way so they cannot reflux content up and out. Most children out grow it if and when they become mobile. Hopes this helps!
mom to Thomas Type III

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