At age 9 months, my little guy stopped wanting to eat. Not that he ever ate well right from the start but this was different. He began to completely refuse to eat. His peds kept giving me useless advice on "proper infant care". By age 18 months, I was spending up to 5 hours a day to get tiny amounts of baby-food mixed with olive oil into him and he was considered "failure to thrive". Long, long story short, he began Early Intervention services- speech therapy, OT and PT but no one helped with the feeding. At age 2, I was able to get him to eat a bit better in front of the TV. Then he began to vomit. At last, they treated him for reflux and he improved a LITTLE. At age 3 we went to a pediatric feeding hospital- one of only a handful of these special places in the country. A 6-week full-day behavioral program followed along with changes to his reflux meds and addition of laxatives. Finally, he gained some weight and I was spending 20-30 minutes per meal instead of 2 hours. But he still always preferred not to eat at all. On to his special needs, he went into an all-day pre-k program for austism spectrum kids. Great program except that they "dont do feeding". The social worker was completely convinced that his eating issue was behavioral and perpetuated by me. After a year of letting him go all day with nothing to eat or drink during the school day and faced with kindergarten which is an even longer day, I contacted an attorney and (another very long story short), we got assisted mealtimes put in place the next day. The social worker was very angry about this, insisted upon speaking to the GI specialist, convinced him also that the trouble was me. Went on like this till 1st grade. I was never comfortable with the reflux/constipation diagnosis - it just isnt normal for a kid to prefer to starve rather than eat. So i finally took him to a new doc. He went for a stool test and we found out that he had an intestinal parasite called Giardia. Within the first 5 days of treatment, his reflux and constipation went away. No more night sweats and he was finally able to sleep thru the night. This parasite causes nausea, loss of appetite, anorexia/failure to thrive (extreme weight loss), malabsorbsion of fats. Its now going to take 3 months or more for his GI system to normalize but at least, finally, I think we're on the right track.
I am really horrified at the number of docs and specialists who misdiagnosed him - at EVERY step along the way.
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