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gross motor delay and FTT

erinmc1erinmc1 member
in Toddlers: 12 - 24 Months
Our son was classified as gross motor delayed and failure to thrive at his 15 month ped appointment on Monday.  Neither classification came as a surprise.  He's lost 2 ounces since his 9 month appointment, and is still well under 18 pounds.  He eats really well, but never seems to pick up weight.  You can actually see ribs front and back.  He seems to have balance issues,as well, and won't stand unassisted at all.  He cruises and walks holding hands, but his movements seem somehow stilted to me.  

I'm worried sick.  His ped said he's not sure if the two issues are related or separate, but his growth patterns have him "stumped."  There are weird peaks and valleys in his height and head measurements, too, but basically he's on-track there.  It's the weight that's the big problem.  I've spent the past couple days trying to get the ball rolling on physical therapy (predictably, the intake coordinator is on vaca this week), and made an appointment with the pediatric nutrition specialist at Children's for 2 weeks from now.  We're doing 2 bottles of PediaSure per day, and we give him as much food as he will eat.  Unfortunately, he's also an early teether and is getting his 2 year molars already, so his appetite is off, which only increases our worry when he won't eat or only picks at his food.

Anyone else have a late FTT baby with gross motor issues?  Of course I've been googling (I know, I know, please don't lecture) to prepare for whatever diagnosis we might get, and celiac seems like a possible culprit.  Anyone have any experience with that?  Thanks in advance.  
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Re: gross motor delay and FTT

  • minervacullenminervacullen member
    Have you tried cutting out gluten? Maybe you should wait though so they can do diagnostic testing.

    I'm sorry you're dealing with this. Is there another pedi or specialist you could get into sooner? Maybe another one will have more insight.


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  • erinmc1erinmc1 member
    I'm trying to cut back on his carbs, but don't want to eliminate them entirely because 1) he LOVES carbs and when he's being this picky about eating, I hate to take away anything he'll eat voluntarily, and 2) I've read that they can't test for celiac without the enzymes in the gastro system created by glucose consumption.  

    The guy at Children's is supposed to be the best in the area.  It's just very difficult to be patient and not worry in the meantime.  
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  • nikkisun54nikkisun54 member
    I have not been through this personally, but I just wanted to reach out and give you some virtual hugs! I can't imagine how scary it can be to be concerned that something is wrong with your little one, but do know that you are doing the best for him, and you sound like one amazing, driven Mama and I have no doubt he will be thriving in no time.

    Little T Born 2/26/13
    TTC #2 since August 2014
    BFP #2: 4/15/15 * EDD: 12/19/15 * MMC: 5/7/15
    BFP #3: 7/23/15 * EDD: 3/29/16



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  • erinmc1erinmc1 member
    Thank you!  I appreciate the words of support.  I hate the waiting game, but that's all we can do.  I know 2 weeks is a short wait for a specialist, so I keep reminding myself that if it wasn't peds, it would probably be a 2 month wait instead.
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  • LSU628LSU628 member
    DD was diagnosed as FTT around her 3 year appt. We were dealing with a dairy allergy, so we couldn't even use the Pediasure! Our pedi basically told us to let her have whatever she wanted to eat. He encouraged Little Debbie cakes, peanut butter, avacado, adding olive oil and her safe butter to all of her veggies, bacon, eggs, basically anything that would raise the eyebrows of other mommies at the grocery store. At almost 5 years of age she is still hovering right around the 30lb mark, but DH and I are both petite so the pedi isn't quite as concerned. Have you contacted your EI office to get an assessment started? We used them for speech and they made the process as quick and painless as possible  and they paid for all of the necessary testing and assessments.
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  • erinmc1erinmc1 member
    Thanks for all the helpful advice!  We did contact EI, on the advice of his ped, for the gross motor delay, and are just waiting for a call from the coordinator to schedule his assessment.  I know they have nutrition services as well, but since J eats well, and isn't picky, his ped seems more inclined to think there's a medical issue, especially since we adopted, and we know very little of his family medical history.  I do know his birth mom had next to no prenatal care.  One of the ped's first questions to me was whether she drank during the pregnancy (not to our knowledge).  But he's a smart kid, got awesome fine motor, socialization, and verbal skills, so I'm pretty sure it's not FAS.

    I think we're going to wait and see what the nutritionist says before we take action of any kind, other than stuffing has face.  I've started making him bacon, then sauteeing veggies in the grease.  It's so gross, but he noms it down.  It does feel bizarre buying and prepping the most fattening foods I can find, especially since I'm post-menopausal and really struggle to keep my own weight down.  
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