Saturday, September 17, 2011

Reflux in Down syndrome

Guest blogger, Kris Benson, is mom to Chase, 9 months old. I first met them at a local (terrible) free annual clinic for children with Down syndrome. I spotted her adorable, bright-eyed one month old baby and immediately thought of Jett.
Chase is doing great, in fact, he started crawling on hands and knees at 7 months old!! But Kris has had to face many challenges that come with the diagnosis. One of which is reflux. Lucky for us, Kris has taken the time to share what she has learned in two informative blog posts. Oh, and did I mention that she's a professional writer? (Score!) Be sure to check out part two: Reflux: Treating the Problem Not the Symptoms.
What is Reflux?

Reflux occurs when the contents of the stomach go back up into the esophagus, which usually results in “spitting up” or more forceful vomiting. There is a ring of muscles, called the Lower Esophageal Sphincter (LES), located at the base of the esophagus and top of stomach that opens and closes to allow food to enter and stay in the stomach. Reflux can happen with this ring of muscles is either not developed enough or too loose to close completely (this is fairly common and explains why infants grow out of reflux) or the muscle opens to release gas after the meal and stomach contents are just ejected into the esophagus as well. Compounding the sphincter problem is that an infant has a shorter esophagus and is lying down more of the time.
Most babies have at least a little reflux within the first 1-3 months. It is more prevalent in preemies and, of course, in babies with DS (probably due to a higher likelihood of reduced tone and/or underdeveloped of the LES) Reflux usually goes away by itself anywhere from 6-12 months. But it can last longer. 
There are several kinds of reflux:
Gastroesophageal Reflux (GER): Most reflux is GER. Ranges from reflux material just entering the bottom of the esophagus to spitting up and projectile vomiting. 
Gastro-Esophageal Reflux Disease (GERD): GER becomes GERD when reflux causes troublesome symptoms and/or complications. Complications are considered to be failure to thrive, slow growth, feeding and/or oral aversions, esophagitis, Barrett’s Esophagus (lining of esophagus is permanently damaged – this is pretty uncommon) even chronic sinusitis, wheezing, pneumonia, and other respiratory problems. 
Extraesophageal Reflux (EER): When reflux reaches up into hypopharyx, nasopharyx, oropharynx, larynx, or trachea.
Laryngopharyngeal Reflux (LPR) (aka Silent Reflux): GER, EER, and/or GERD without the frequent spitting up/vomiting. Fewer symptoms present.
Doctors push for immediate use of antacids because they claim that chronic reflux can lead to contact ulcers, recurrent ear infections, scarring to throat and voice box, or even cancer called adenocarcinoma of the esophagus. This is not advisable.
Potential symptoms
A baby can have several, one, or maybe even none of these symptoms:
· Constant and/or sudden crying or colic-like symptoms
· Displeasure / pain when placed in a reclining position
· Arching neck and back during or after eating
· Irritability
· Wet burps or frequent hiccups
· Poor sleeping habits – typically with frequent waking
· Chronic hoarse voice
· Noisy breathing and possibly apnea
· Refusing food or accepting only a little despite being hungry OR wanting to eat constantly because that helps soothe/decrease the pain
· Food/oral aversions
· Swallowing problems – gagging/choking/coughing
· Repeated swallowing
· Spitting up and/or vomiting
· Post nasal drip
· Blood in stool
Things that might help control reflux
· Add a thickener like gluten free oatmeal to the bottle (if the milk is heavier/thicker, it might not reflux up into the esophagus as easily or as often).
· Feed the baby in a more upright position (ears above mouth).
· Reposition yourself and the baby to let the baby stretch out as much as possible when feeding (see picture) – not bent at the waist crunched in the crook of your arm.
· Feed baby smaller more frequent meals to avoid overstuffing the stomach making it easier for food to reflux out of it.
· Keep child upright (and calm!) for minimum 30 minutes after eating.
· Put child to sleep on left side.
· Put a wedge in the bed so child sleeps on an incline.
I have a wedge in my son’s crib and always start him off on it, but he inevitably slides down it until he is a crumpled ball at the bottom or ends up parallel to it. There is a wedge/sling combo that you can buy (I have seriously considered it, but never bought it) to keep the baby on the wedge. The website even notes that insurance may cover the cost of the item if ordered by a hospital or doctor.
You can also just buy the sling and elevate one end of your mattress:
I have often fed my son while he’s lying on a wedge in his crib because he ate more and seemed more comfortable. Now that he’s older I position him so that his head is in the crook of my arm and his body stretches across my torso. It keeps him more upright and more stretched out.
Reflux is frequently diagnosed just based on parental reports of symptoms, but there are a few tests to confirm:
Barium Swallow Study (aka Upper GI): They mix a small amount of barium into the child’s food/milk and feed it to him while taking a series of fluoroscopic x-rays over about 15 minutes to track the barium’s path. You can get a false negative during this test because your child has to be having the reflux during the test. My son had this done and they actually tracked the barium going back up the esophagus a little bit, so reflux was confirmed.
pH Monitoring: A thin tube is inserted through the nose into the esophagus and left there for 24 hours. The tube measures the amount of acid that reaches the esophagus and the frequency of the problem. This can help determine if any respiratory problems are triggered by reflux.
Upper Endoscopy: This test can reveal the extent of damage caused by reflux. A flexible tube with lights and a camera is inserted into the child’s mouth into the esophagus, stomach, and duodenum, which is the first part of the small intestine. The doctor can take biopsies at different locations. This is the test to confirm Barrett’s Esophagus.
Reflux Medications:
There are 3 classes of medications: Antacids, Histamine-2 (H2) receptor antagonists, and Proton pump inhibitors (PPI).
Antacids: Maalox and Mylanta. These work great for immediate but short-term relief of symptoms. These neutralize the acid in the stomach rapidly but only last a few hours. These are not advisable for infants and children.
H2 Blockers: Zantac (randitine), Tagamet (cimetidine), Pepcid (famotidine), and Axid (nizatidine). H2 signals the stomach to make acid. Therefore, blocking the H2 receptors in acid producing cells in the stomach blocks the production of stomach acid. This category of drugs works within one hour and only lasts up to 12 hours. Also, most babies develop an insensitivity to this drug anywhere between 2 weeks to a few months and it ceases to control the pain from reflux. 
PPI: Prevacid (lansoprazole), Nexium (esomeprazole), Prilosec (omeprazole), Aciphex (rabeprazole), and Protonix (pantoprazole). These reduce the production of acid in the stomach by acting on the cells in the stomach wall (called proton pumps) that make and release the acid. This is the newest category of reflux medication. It takes about 2 weeks to build up enough in your child’s system to be effective – the doctor will probably recommend staying on an antacid and/or H2 blocker until this kicks in. I believe lansoprazole is the only one that they give to infants, but not positive about that. 
Both the H2 blocker and the PPI medications require a prescription for a special compounded dosage for infants and needs to be refrigerated. There is a lot of debate that these medications become less effective after 2 weeks and they always write the prescription for a month. There is something called “Prevacid Fast Tabs” that you can get and dissolve yourself as needed, but according to my GI doctor, your child has to be over 16 lbs and my son is still nowhere near that.
***The H2 Blockers and PPI medications are very strong medications and you should never stop either cold turkey. It is necessary to wean off of these medications extremely slowly – over a month or more and always under the care of a doctor – because going off of either of there too quickly can cause a massive overproduction of acid which can be extremely painful and potentially damaging.***
Note: Overexpression of GABA, a common problem in people with DS, can cause reflux, both acid and nonacid in the esophagus.  Taking ginkgo to control overexpression of GABA may therefore help with reflux. See Ginkgo: The Hows and Whys for Down Syndrome for details. -Andi 
Nutritional Ways to Treat Reflux
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1 comment:

Anonymous said...

Hallo ladies! I,m a grandmother of adorable 15 month old Lucas who looks like Jet's brother. To help with his reflux I give him a digestive enzymes and it works well. Ge is hungry more often, goes to the bathrom 2-3 times a day. This seems to make him happy and playfull.