Anything besides Prevacid work for severe GERD in a 2 1/2 year old?
My 2.5 yr old daughter was dx with GERD at age 2 months, and has been on Prevacid since. She was hysterical until we got the dose and adminstration of medication right; once medicated, she became a very happy baby. She is still a happy, thriving child; however, has never outgrown her GERD. She is almost 30 pounds, and is on 15mg of Prevacid twice daily. Although she is maxed out on the dosage, her symptoms seem to be getting worse. For instance, someone gave her something to eat right when she got up from her nap yesterday; therefore, we couldn't give her the evening dose on an empty stomach, so we skipped it. She woke up screaming, in awful pain and audibly refluxing and coughing. I understand these drugs have a short half life, but it seemed as if there was nothing left. Even with her full dose of medicine every day, she is audibly refluxing, swallowing strangely, and coughing more and more. I need to note that she had her adenoids removed approximately 6 months ago. Almost immediately, she began making a strange throat-clearing noise she had not made before. She is still doing this as well. Are there additional tests and/or medications we should be inquiring about? She has had 2 scopes and food allergy testing (negative).
Dear Michelle, It sounds like you have been dealing with reflux for a long time. It is hard work, isn't it? There is much support and information on this site. I hope other parents will join our discussion and give their ideas and support too.
Prevacid is a strong medication for GERD. I know the dose can vary from child to child so ask the doctor if this is indeed the highest dose possible for her weight and symptoms. Some doctors also add another medication such as an acid reducer or a motility medication. Each child is different so I want you to discuss the situation with the doctor.
I wonder if a Ears Nose and Throat specialist was consulted-perhaps for the adenoids? Would there be any concern about aspiration or congestion? asthma? snoring? sleep issues? swallowing problems?
Some toddlers have trouble with silent reflux-stomach contents comes part way up the esophagus (food pipe) and causes coughing, choking and breathing issues.
If that is the case with your daughter, a consultation with a pulmonolgist may be needed at some point.
Take care and let us know what you find out.
Best wishes,
Jan Gambino
The Reflux Mom
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Thanks for your input, Jan. Yes, an ENT did the tubes and adenoidectomy. Much to my dismay, she (ENT) is not giving any useful information or advice on the recent LTR, in addition to the GERD. I just spoke with my daughter's GI dr (nurse practitioner actually) today, and she agreed that it sounds like she needs something to help with her GI motility. I failed to mention that my daugher has also been diagnosed with hypotonia (she receives weekly PT for this - she walks fine, but still a little clumsy & behind in the gross motor skills area). I have reminded both of her specialists of this, but no one made the correlation until I mentioned again today to the nurse practitioner. She said it definitely could have a lot to do with holding food in her stomach too long. Therefore, we are going to try Erythromycin. Have you heard of anyone using this antibiotic in low doses for GI motility? It makes me a little nervous, as my daughter has had C Dif twice due to lots of antibiotics for ear infections. She said it shouldn't be a problem in such a low dose. As far as breathing issues and sleeping issues, she fortunately does not seem to have either. Should we still see a pulmonologist in case there is aspiration? She does cough & choke sometimes, so I do worry about this. It just seems that each specialist is concerned about their own specialty, and do not want to cross lines. I definitely feel that I need to advocate for her every step of the way, which I have. Thanks for your advice!
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Hello Michelle,
I have heard of Erythromycin being used for motility. Unfortunately, there are not too many medication choices for this type of medication. Another one that is sometimes used is Reglan. This medication has a history of side effects and limited success in treating the symptoms.
It does make sense to try this treatment, especially in light of the low muscle tone.
I know it is a terrible burden when you are the case manager, trying to coordinate care and make sure the entire team is aware of the various conditions and treatments. Sometimes the pediatrician serves as the case manager. Other times the GI doctor. Perhaps you could address this with the doctors and ask for some assistance with case management.
If your daughter doesn't have any obvious respiratory symptoms, a visit to the pulmonogist probably isn't warranted. My daughter had constant respiratory illnesses and pneumonia. There was no doubt she was aspirating. In fact, it was the pulmonologist who suggested the possibility of GERD.
Let me know what you decide about the erythromycin.
Take care,
Jan Gambino
The Reflux Mom
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