Tips:

Dealing with Severe Reflux

by Kim R

  • If you believe your child has reflux you should seek an appointment with a pediatric gastroenterologist as soon as possible.
  • Consider getting a videofluoroscopic swallow study (VFSS) modified barium swallow study (MBS), or endoscopy to ensure that your infant does not aspirate from her reflux.
  • Explore with your child’s pediatrician and specialists any potential underlying causes or aggravating factors contributing to your child’s reflux symptoms (such as a hiatal hernia or Celiac disease).  Sometimes reflux can be improved with a change in diet, a change in medications, or a medical intervention.
  • Be aware that severe reflux can cause failure to thrive, which can lead to poor growth and development.   A great deal of pressure and stress is put on parents to put weight on their child in these cases.
  • Reflux can also contribute to speech delays.  Consider feeding therapy or speech therapy to help your child with his suck swallow reflex and oral motor development.  Your state’s Early Intervention Program can provide these therapies at little to no cost to you (depending on your ability to pay).  These therapists will come to your home to treat your child, so you do not have to take your child out of the home for these appointments.
  • Be aware that reflux can lead to other feeding problems that are not merely the result of bad behavior or control issues. Reflux can make children fearful of food because eating causes them so much pain.   Keep in mind that your child’s refusal to eat or drink may be the result of pain and fear.  This realization alone may help you shore up more patience and understanding when struggling with your child at meal time.
  • If you find yourself frustrated with your child’s refusal to eat, you may want to recruit a family member or friend to try to feed your child.  This change in approach may be enough to at least temporarily divert your child’s attention away from the fear and pain she is feeling and it could give you a much needed break from stressful feedings.
  • Be aware that psychological problems may result from prolonged cases of reflux.  Consider consulting with a psychologist or developmental pediatrician if you suspect this is the case.
  • There are inpatient and out-patient feeding clinics and a number of surgical interventions (such as a gastric feeding tube or nissen fundoplication) that can help your child with severe reflux and feeding problems.  Consult with your pediatrician and pediatric gastroenterologist regarding the advantages and disadvantages of these options.  Be aware that feeding clinics may have long waiting lists.
  • Also, be aware that there are special thickeners (such as Simply Thick) and special bottles to accommodate thickened liquids and formulas, which can reduce reflux and the potential for aspirating on liquids.
  • When considering calorie supplements such as Polycose and Duocal, be aware that the fat in Duocal can aggravate your child’s reflux.
  • Consider smaller, more frequent feedings to minimize vomiting and weight loss.
  • Consider alternative therapies. In some cases, chiropractic treatments can be quite effective at reducing the severity of reflux.
  • Having a child with severe reflux makes it difficult to leave the house, given the fear that your child will vomit and you will be left cleaning up the mess in the car, in the store, or at a friend’s house.   Consider having friends visit you at your home, ask neighbors and friends to run errands for you, or consider having groceries delivered if you or your spouse are unable to go to the store without your child in tow.  This will help minimize your stress and anxiety.
  • When you do leave the house, take plenty of wardrobe changes for your child and for yourself.  Consider putting protective coverings over your car seat under the baby seat or booster seat. Consider also keeping garbage bags and cleaning supplies in the trunk of your car.
  • You may have to change your child’s bedding multiple times during a single night.  Consider layering multiple sets of sheets and waterproof padding on your child’s crib or bed for quick changes.
  • Be aware that there are reflux wedges and slings that may be safer than elevating your child’s crib mattress.
  • Feeding your child over hard (tile, wood, or linoleum) floors will help reduce the amount of time you spend cleaning up vomit and the amount of damage to furniture and carpet.  The kitchen floor may not be as comfortable as the rocking chair in your bedroom, but it could save you blood, sweat, and tears in the end.
  • There will be days when you feel like you are swimming in vomit.  Admit when you feel overwhelmed and ask for a friend or family member to care for your child so you can get away for a while.  If you do not have a friend or family member who can give you respite, consider a reputable respite program.  Your church may be another good place to look for people who can provide respite.  Many churches have special ministries and support services for families who have children with special needs.  Also, be aware that there may be some family support programs in your community that can help you pay for respite services, even if the services are provided by a friend.   It is very important to your mental health and your relationship with your child that you get a break from the reflux, vomiting, and feeding issues.
  • Recognize when you are feeling angry and upset and leave the room.  Forgive yourself when you do lose it.
  • Consider joining a local or online support group for parents who have children with GERD.  Your child’s gastroenterologist should be able to refer you to one.
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