Help! Failure to thrive!

[Anonymous]

My daughter is 18 months old has been rx’d failure to thrive. She had reflux super mildy as a baby. She has always been small, around the 5% for weight. My old pedi always said she was fine, just small. Around 6 months she started having nonstop respirtory infections and i thought maybe we should check into cystic fibrosis, since she was losing weight as well. Dr wanted me to hold off until that spring to see if it was just cold/flu season. She never got sick like that again.

I was told just feed her tons ( which I did and she ate, but never any change )

Fast forward a year- we’ve moved, new Dr. She’s looking at her chart and asks why we never had her tested for any thing since she basically isn’t growing. I told her that our Dr just said she was small, etc. I told her she just won’t eat much, no matter what I give her or how often/much, unlike before as a 6ish month old.

So this dr said she is failing to thrive, and we just did all these blood/fecal/urine tests, plus the sweat tests to rule anything out. They all came back normal. So now we are to go to pedi GI. What are some of the rx that your little ones had?

I know celiac was mentioned, but are there any other things to know about?

She has frequent ( the dr said 4+ is questionable at 18 months ) but normal bowel movements. They don’t float, aren’t greasy or slimy, no blood that is visible or showed up in the tests.

I want to mention that as a baby, she never cried to be fed, like her brothers. She would eat, but never seemed mad when she woke up or had been up for awhile. In fact she still never seems bothered by the fact that maybe sometimes we are running errands and lunch is late or doesn’t get a snack after naptime. I am comparing to her brothers, who were grumpy until they were fed, still are like that as kiddos. Let let me know they were hungry!!

Sorry for the rambling, but I am confused and worried!!

Thanks for any suggestions or help

[hellbennt]

GINA!! hugs!!!

thoughts: if it IS reflux and throat is irritated and thus making her not want to eat, maybe try carafate?? I don’t think it would hurt…if it helps w/ food intake, then you’d know it’s reflux?

just thinking as I type…

my son Ari fell off the growth chart at 9 months- he didn’t want to eat solids much- but he did not have refllux- just a small eater/small guy. he’s still at a low %tile for weight now at age 4.5 – just a peanut…dr said he was following his own curve- is this the case w/ your daughter?

what will your daughter eat? can you fatten it up w/ lots of good fats?

https://www.infantreflux.org/Forum/forum_posts.asp?TID=13070&KW=blood+test+celiac

hellbennt2011-01-05 12:55:32

[hellbennt]

https://www.infantreflux.org/Forum/forum_posts.asp?TID=13070&KW=blood+test+celiac

another thought:

thrush! read above…

[Anonymous]

Thanks Laura, you are awesome! I haven’t noticed anything in her mouth that would make me think thrush. Even if it was in her esophagus, I would probably see something creeping up right?

I am going to feel AWFUL if she has had reflux this whole time and I didn’t realize it just because she wasn’t screaming her head off. She was fussy at best as an infant, but the prevacid made even that go away. SO I guess if she’s had it mildly this whole time she would not want to eat…still the frquent poops throw me for a loop…

I keep reading about celiac- I am not sure if one of the labs was for celiac ( they test for it with blood sample? ), but I just don’t think she has enough of the symptoms.

JUST got off the phone w/ pedi GI and we go in tomorrow!! Hate to be a pessimist, but I wondered in the back of my mind if that was because they weren’t so good ( well known=good=booked? ).

I just hope we don’t leave w/ a bunch of “been there, done that” advice.

[hellbennt]

I don’t think you would necessarily see the thrush? they might have to find it by scoping? you might want/need a scope anyway, to see if there’s anything going on there- irritation, thrush, etc & check eos cells to see if there’s an allergy….

[Anonymous]

Oh, I thought it was something you could see if it was in the mouth? Like a white substance. So if it was in the esophagus, it wouln’t spread up into the throat/mouth?

Either way, I want to have both “ends” checked out! I am just hoping I am not waved off as “a nervous mother”…

[hellbennt]

I just mentioned it bcse this happened to christine’s (kevieb) daughter, sylvia (link above)…it’s worth a look-see 🙂

[Anonymous]

I hope I didn’t come off as rude about the thrush?!?! I just meant I thought I could see it at least in the back of her mouth? So it can be down in the throat w/ any visibility? Yikes!!

The appt went well, Dr. was very nice, down to earth and open to my thoughts. Whew! He reeeeeeeeally didn’t think she had anything going on, other than her just being naturally small. When I brought up the frequent bowels ( since the pedi seemed alarmed ) he mostly wanted to know about them, not how many. I even kinda brought it up again and he just went straight to describing what he would be worried about as far as “content”. In all my questions I forgot to mention thrush!! Grr!. I may call back and ask…

He also didn’t suspect reflux, but said he was open to meds if I wanted to try them and see if she ate any better. Where were you four kids ago???

We talked about celiac ( my brother suspects he has it ), and again the poop didn’t match description,plus her blood test was neg. I told him I have read ( and on this site as well ), that the blood test isn’t as accurate with smaller children. He said it was 99%, but he said give gluten free diet a shot and if it helps, then it would be better than any test. I think that is the smartest thing I have heard from a Dr in quite awhile.

I told him I have been basically accused of not feeding her by past ( EX ) Dr.’s, even though I TRY to feed her any and everything but she just won’t eat much. He also said that she had enough visible fat stores, seemed energetic, and developmentally on track that he didn’t think she needed a feeding tube ( double whew! ). We go back in three months so make sure she is gaining, since he wants to be sure, before she turns 2.

Thanks Laura once again for responding and supporting. I have four kids now, and I was just thinking that this site, it’s members and YOU have been there for me for EVERY question, however simple or obvious, every single time. Thank you!!

Tina

[hellbennt]

oops! I called you Gina! I’m sorry, TINA!!!

hugs to you & for your kind words!

I hope everything gets better from here on out! I do like the sound of your dr!

PLease keep us updated!

[Anonymous]

hi tina, i’m sylvia’s mom that laura was referring to. i’ve had two kids with esophageal thrush and it did not show in their mouths. one of them had at least had it in her mouth and i’d had it on my breasts at first—but it disappeared from her mouth. she got to where she was refusing to eat, or else she woudl chew her food and then spit it out. she also was making a funny sound in her throut sometimes. the doc said he could only know for sure with scope, but that he’d go ahead and treat her for it and we’d see what happened. he also told me to stop nursing her since i couldn’t get mine cleared up. he put her on a week to 10 days of diflucan—and she started to eat and sleep and gain weight!!

it was a total surprise when my other daughter got it. she was about 14 and had reflux, so we had a scope done and you could see the white spots down her esophagus–he said either yeast or allegies–biopsy said yeast.

i also have 3 children with celiac disease. the Ttg test is not reliable in children under 3 years old—some of them just don’t produce the Ttg antibodies yet when they are that young.

sorry to disagree with your doctor, but going gluten free without testing is not recomended by peter green, who is one of the “foremost” doctors on celiac disease. all thre of my girls with celiac had different symptoms—-one of them had no symptoms except that she wa so thin she looked like she would break—but she was as tough as nails. one of my twins was nauseated constantly and had the runs alot, the other twin had the rashes that celiac can cause—that is actually how we first picked it up—because of where her rashes were located.

sylvia was failure to thrive for two years. we had a feeding tube suggested twice because she wasn’t growing, but both times i managed to get enough weight on her to avoid it.

how much does your daughter weigh? you said she has always been around teh 5th percentile, so it sounds like she is maintaining her growth curve. it may be that she is just going to be a little girl. i didn’t think they considered them failure to thrive unless they were down around or below? the 3rd %. this is where sylvia was. i think they also get concerned if they cross two major lines on the growth chart.

the fact that she never seems hungry sounds a little concerning to me. if it were me, i think i would ask to have a scope done with biopsies. they could look for reflux, eosinophils, and celiac all at the same time. good luck. i don’t come on the board very often any more, but sometimes laura will send me a note and tell me there is a post i might be able to add to. so, if you have any questions you’s like to ask me, and i don’t get back on here, just let laura know and she’ll contact me.

[Anonymous]

Thanks Sylvia! And thank you Laura!

I would love to send Sylvia an email, Laura would you mind connecting us??

Thanks,

Tina

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