Failure to thrive - poor weight gain in toddler with dairy allergy

[Zenmama1]

Hi

I am not sure if this is the right place to post this. But I was looking for some advice. My 21 month old daughter is just under 18lbs. So she isnt on the charts for weight. She has been labeled as Failure to thrive. Height is in the 25% and head circ is around 35%. She is allergic to dairy so I believe this is why she has only put on 2 pounds in the second year of her life. But her ped wants me to go to a GI and possibly a geneticist - she has already been cleared by a nephrologist and endocrinologist for problems like bone disease. I have been to a dietician twice and have modified her diet.

But now, I am very concerned about the invasive tests the GI will do. And I am worried they will try a feeding tube. But I am also worried if we don't test and something is wrong that she will be very small (comparatively) for the rest of her life. I'm very confused and scared.

Has anyone been through anything like this? Any insight? Advice?

[BayouBaby1]

At 15 months my son was steadily dropping off the growth chart as well. He was not quite "failure to thrive" but would be if we didn't figure something out. He went to GI & didn't find anything physically wrong, but suggested a nutritional supplement. My son is also dairy intolerant, which leaves fewer choices for supplementation. However, on the list given was a soy supplement called Pediasmart. I wasn't happy about giving soy, as 98% of products are GMO, but this soy is GMO free & is the most natural supplement on the market. I also supplement him with fish oil liquid to combat the neg effects of omega 6's from the soy. Each 7 oz bottle is 230 calories & has helped him put on some much needed weight. I also worried about constipation with the soy, but so far it hasn't been an issue like I thought it would be.

[SweetSilver]

DD1 at that age was at 25% for height, 5% for weight.  I declined the GI tests.  She has had a severe dairy allergy since she was an infant.

Does your dd know when she is hungry?  Do you sense that she is not connecting food with her hunger?  Does she eat heartily, or is it a struggle to convince her to eat?

The reason I ask:

DD's ARNP referred us to an eating therapist, pretty much on OT for eating difficulties (we had run the battery of tests expected for a child dropping off the growth charts).  We wanted to see if there was anything physical keeping her from eating what she should, and I suspected that dd didn't know she was hungry, or that eating calmed that feeling.  Turns out, I was right.  Eating to satisfy hunger is indeed a learned response, albeit one learned very early for most kids.   The children that are likely to have missed this connection usually have pain issues associated with eating, like extreme reflux, allergies, or motor issues (tire easily).

The OT's response to me was to let her eat what she wanted.  "Even cookies all day?"  Even cookies all day.  The goal was to reestablish a positive response to eating.  Sometime near 5yo, after we had eliminated wheat from her diet due to developing an allergy around 3.5yo, she proclaimed to me at the dinner table, as if she had *just* noticed this: "Mom!  When I eat my belly feels better!"  

She didn't "catch up" right away so much as she stopped dropping on the charts, and that really is the key.  Is your daughter's weight holding steady with her growth?  

My daughter is now nearly 8yo, and she's still not the tallest kid, and she is still petite, but lean and strong, and she is generally keeping track with her growth.   I see all the other 8yo's in her gym class, and while they are taller, they aren't by that much.  I realize, now that those stressful days have past, that I needed to look other numbers besides percentages: exactly how many pounds would have put her weight close to her height?  How many inches/pounds separate the 25th percentile from the 50th?  

Neither of my girls are "HWP", and both are lean, though healthy, and now it's my picky 6yo that gives me grief.  

[RavenStar]

I can understand your concern, Zenmamal.

dd1's weight plateaued between ages 1 and 2.  She was still getting taller but didn't gain any weight for a whole year.  Our Dr. gave us several months to see if we could get her to gain weight by adding more fat to her diet.  We went in every 6 weeks for weight checks

We saw a dietician.  At 18 mos. old she had lots of blood tests done and a urine test.  The whole thing was very stressful for us.  The blood test was "inconclusive" for Celiac.

Finally we were talked into having a biopsy done of her small intestine to check for Celiac disease.  Our Dr. thought for sure that she had this.

The biopsy came back negative for Celiac.  It did show that she was lactose-intolerant.  So we had to take her off of dairy too.  Most of the dietician and Dr.'s food plans revolved around adding tons of dairy to her diet.  So now we were told to just add olive oil and other fats (avocado, etc).  We were also advised to stop feeding her snacks in-between meals.  The dietician told us that children gain more weight if they eat more at one sitting, than by small meals throughout the day.

It was so hard for me to trust my instincts on all of this, since I had so many people making me so worried.  My feeling was that she was just small and she was putting all of her energy towards growing taller.  I also think the fact that she was eating dairy, when she wasn't supposed to, was interfering with her growth.

DD1 is still small for her age.  She is 6 1/2 and 34 pounds, 44 inches tall.  For most of her toddler years she was in the 5th percentile or below, sometimes not on the chart at all for weight.  Now she's in the 10th for weight and 25th for height.

I vowed that I would not put DD2 through all of the testing we did with DD1.  Thankfully, our Dr. says that as long as DD2 is growing and is on a curve, he's not going to worry about it.  This is such a relief.  Since DD2 is not on the chart for weight and is in the 5th % for height.  She is 3 years 3 mos old and 22 lbs.

Our Dr. believes that because DD2 is the same (slow growing), that it's probably just family-related.  We have a lot of smaller people in our family.  Some of whom have grown a lot as adults.  I am so glad that this new Dr. is taking this stance.  Our former Dr. wanted to start doing more testing on DD2 right around the time he retired. 

I'm sorry that you're going through all of this.  I can understand not wanting to subject your daughter to any more tests.  Do people in your family tend to be smaller, especially as children?  I can understand your Dr. wanting to rule things out and at the same time, it sounds like you've covered a lot.

From what you said, it sounds like she is still growing, still gaining weight and still getting taller.  That's why I think the words "Failure to Thrive" can be a bit harsh.

Is it possible to get another opinion or to change doctors?

Or see a nutritionist?

I wish you well and hope for the best.

[flightgoddess]

Ifyou are doing tests anyway, add in the celiac. Especially if you are doing a gi scope anyway.

Make your own 'pediasure' with some dairy free protien powder, (fruit if you want) and canned full fat coconut milk. Make it really fun, have her put things in the blender, watch it spinning, etc, get a fun cup and straw and make it an afternoon snack or bedtime snack ritual. My son loved when it was time for his bedtime shake.