Posted By Posting
Apr 23, 2003
advice from doctor/parents prior to Mayo Clinic appointment
My 3.9 year old son has been treated for reflux since he was an infant with almost every type and combination of medication. His symptoms have changed over time but he continues to display discomfort, feeding difficulties, sleep disturbance, spitting up, constipation, hoarse voice, poor growth and now what seems to be the beginning of Asthma. He also has hydronephrosis with normal/high creatinine level, and asymptomatic Arnold Chiari 1 Malformation. The Nephrologist claims that the stated symptoms are unrelated to his kidneys because his levels are too good, the Endocrinologist does not believe that his growth issues are related to her specialty and his Chiari is believed to be asympotomatic. We have had a Sleep Study which showed some sleep apnea, a PH Probe showing an increased amount of acid while being on meds, hence, the meds were not working, an Endoscopy which was normal, a Gastric Emptying test showing a delay in emptying, a Nasal Endoscopy showing Intermittent Paradoxal Vocal Cord Movement. We had his tonsils/adenoids removed in hope to help his sleeping, it has made no positive change. He is currently taking 20mg of Nexium for his reflux (they want to increase it to 40mg,) Miralax for constipation and Erythromycin for motility. We have a visit to Mayo Clinic to help us piece this all together in June. My question is, does anyone have any suggestions for further evaluation, treatment etc. Has anyone experienced this combination of symptoms with disorders? Any suggestions/advice would be appreciated. Nancy
Check with your
doctor first!