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[quote=Anonymous][quote=Anonymous]My son was born with IUGR and RSS was on the table for a while. We went through all tests with no reasons for his IUGR found, and ultimately I think it was something to do with my body during pregnancy. But it took years for all tests, therapies, etc... Doctors are always looking for a diagnosis but the truth is that there is so much they don't know about iUGR and it is a result of MANY different causes that can be genetic or environmental, similar to low muscle tone (which my son also has mildly). We didn't achieve catch up growth until my son was 18 months old when we started employing distraction techniques (toddler shows on tv, lap top) to get him to eat. Once we did that, he caught up significantly from <1% weight to 30% at 24 months and where he still sits now at 4 yrs old. And his height went from 1st at birth (adjusted) to 65th (only after we got him to eat more with tv--a lifesaver for us). We still do PT and work on social anxiety and some other behaviors, but he is thriving. We never got a true cause. If it is RSS, unless genetics are positive it can take years to figure out. My son had other features they tried to attribute to RSS like the turned pinky, small teeth, etc... Only they ignored that my husband has those same features... Try to not let doctors freak you out too much. [/quote]

Thank you.  This is very helpful.

DD is 4 months old.  We just switched from expressed breast milk to Alimentum formula to see if that will help weight gain.  We also switched from compounded Prevacid to solutab Prevacid.  Since the switch two days ago, she's doing better and taking more ounces per feed.  We went from 18 ounces per day to now 23 ounces per day.  I'm hoping this change for the better is here to stay.  My milk seems to have plenty of fat, and I eliminated everything from my diet, so I'm not sure why it wasn't working for her, but I'm really hoping that the switch to formula and solutabs will help.  We've tried screen time while eating, but it hasn't helped.  We've also tried walking around and dancing and trying different bottles and nipples and dream feeds.  I'm really hoping the new medication and the formula will help.

DD has a bit of a weak, somewhat pointed chin, but so do I.  She has an overbite, but so did I before braces.  Her ears sit a bit low and protrude somewhat, but so did DH's when he was a baby.  She has a high palate, which neither of us have, and she was born IUGR, while we were both born on the larger side.  She does seem eager to eat initially, she just doesn't have the best suck so she gulps a ton of air and then the feed is ruined.  Once we burp her to get the air out, her reflux really sets in and she's in pain and doesn't want the bottle.  She has good skin color and very good head and neck control, but absolutely hates tummy time and, while she can raise her head and move it around, she can't prop herself up on her fists or her elbows (i.e., we have to do it for her).  She's not rolling over yet, but I'm told that's normal.  She is extremely alert and laughs and smiles appropriately.

We're seeing a geneticist at Children's at the end of February, but I'm hoping she can get back on the chart a bit before then and this will all be for nothing.  She was born 5 lbs 5 oz, 19 inches at 38 weeks.  She gained 2 lbs on breast milk alone in the first month, then her reflux set in and it's been very slow weight gain ever since.  She just hit 16 weeks and she's now 10 lbs 8 oz, 23 inches.  [/quote]

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