Has anyone done feeding therapy for low weight issues ?

axh2277

I'm not sure if this is the right place, but I'm at my wits end.  DS has acid reflux and delayed gastric emptying.  Because of these conditions he only eats about 16 ounces of formula a day and despite upping the calories to 26 calories an ounce he's only gained 1 lb 4 ounces since August 21st so the GI mentioned that maybe it was time for a feeding tube.  I have a call into them right now to see if he's a canidate for feeding therapy because I want to be able to say that we have tried everything before going to the feeding tube.  His weight is currently 14 lbs 3 ounces, but what is concerning the GI the most is that he has dropped from the 36th percentile down to the 5th since July.

TIA!

akimbo

DS has feeding therapy 2x/month (was 4x/month for a long time). At 18 months he was diagnosed with Williams Syndrome (reflux/severe gag reflex and many other issues).  His feeding therapy is from EI.  I see you're in Boston, there's an excellent feeding clinic at Boston Children's Hospital where I know of quite a few kiddos that have gone there for feeding support.

I found this link:

https://www.childrenshospital.org/clinicalservices/Site2145/mainpageS2145P4sublevel13Flevel14.html

You may want to give a call and/or see if you can get in for a consultation. One thing to know, if you do decide to go to some feeding therapy program, get everything in writing from your insurance as to what they will cover.  It can get quite expensive but they are miracle workers from what I hear.

akimbo

PMQ - you made some excellent points. DS is in the low percntiles for a typical growth chart, but WS has it's own growth chart and he's right on the 50th percentiles for both height and weight. Yeah - DS is little compared to typically developing kiddos but he's doing really well.

axh2277

Thanks ladies.  We ahve a GI appointment on Wednesday and I spoke with the NP this morning about feeding therapy and she said we could discuss it as one of our options on Wednesday.  We have a neuro appointment on Monday morning at MGH and she said that they should have the neuro's opinion by Wednesday morning for the GI to review.  At this point our options are a) do nothing, b) push for a feeding therapy referral or c) consent to the tube.  I'm planning on pushing for a and b.