Weight Issues Continue…

29 Sep

We are still in a quandary about what to do for our daughter who really won’t eat.  She is the happiest little girl in the whole world, but she will not eat enough to put any weight on her already little body.  She actually lost about 5 oz last month.  At almost 3 years of age she is 33 inches tall and only 21 and a half pounds.  She is so little, but she is so full of personality.  She is such a doll. 

In her 8 months home, she has made incredible gains in all areas but eating. 

Last week we met with an occupational therapist to see if her eating woes could be a sensory issue.  At the end of our meeting, the OT said that our daughter was hard to figure out.   However, she feels our daughter is a sensory seeker as far as her motor skills.   But she did not think sensory issues are the sole reason for her eating problems.  She said that our daughter did not follow the typical pattern for children with food sensory issues, and she said she certainly did not think she looked like the typical failure to thrive child.

I really don’t know what has led to all of her eating problems.  But I think her eating problems are part developmental delays (she chews only up and down and has a weak bite), part personality (she is so busy), part stomach issues (maybe her HIV meds are making her nauseous) and maybe part sensory issues.  Who really knows?

We are just unsure what our next steps should be to help our daughter.  We are open to a g-tube but no one thinks our daughter will keep it in with her active and somewhat quirky personality.  In a few weeks we will see our PID doctor again and run some more blood tests.  As of today our PID prescribed Megace, an appetite stimulating medication to try.  She and our local doctor want us to get into a pediatric GI doctor ASAP but their first appointment is in January.  I am trying to press for a sooner appointment.  I will keep you posted on her progress.

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2 Responses to “Weight Issues Continue…”

  1. Anita September 30, 2010 at 9:21 am #

    A child doesn’t just pull out a g-tube. They are in there pretty good. Even a mickey button (which is secured with a sort of balloon on the inside of the stomach) is very difficult to pull out. It basically has to get snagged GOOD on something before it could get pulled out. And if it does, you just put a new one in (takes a few minutes). No big deal.

    Hopeful that the appetite stimulant works. They put our daughter on Reglan for delayed gastric emptying and it works like a charm. The HIV meds (or something else) caused the food in her stomach to stay there too long, so she never felt hungry. The Reglan moves the food down the track more quickly.

    Kendi was 35 inches and 20 pounds when she turned 3 in June. She’s gained 3-5 pounds since then, thanks to the Reglan.

    • Kay September 30, 2010 at 2:17 pm #

      Thanks Anita for all the info. It is my local doctor’s office that thinks she will pull out the g-tube. They must not know that much about g-tubes. Thanks for clarifying about it. We head to Dallas to our PID doctor in a few weeks. Hopefully they will have more ideas about how to solve this problem. I will have to ask about Reglan also. That is so great your daughter is putting on weight now. Hopefully we will make progress with this soon.

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