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Becky Parker
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| Posted: July 24 2008 at 6:47am | IP Logged
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I posted in another thread that my ds has been labeled with Failure to Thrive. He just turned 1 and hasn't gained but 8 ounces since he was about 6 months old. Just by looking at him, you would never know he has a problem. He is active, happy, alert, right on target developmentally, etc. The problem is his weight. Hospital tests showed nothing wrong except "slightly low iron" which we are taking vitamins for, and his number for phosphates was slightly off. At the doctors suggestion, we are going to see an endocrinologist for the phosphate issue and we are going to take him to a clinic for eating disorders. I'm just wondering if anyone has had a similiar issue and could offer advice.
My doctor wanted me to stop nursing at 8 months but I would not. I think that is why she gave him the FTT label. I was willing to supplement, which I did, but my mothers instinct told me a baby that is not growing should not be weaned. Now that he is 1 year I don't mind weaning him and I've started the process but he is very stubborn. He has never taken a bottle, but will drink formula or Pediasure (doctor recommended) out of a cup. He needs to eat more solids but he has always spit them back out - like when a baby first takes cereal and his toungue shoves the food back out of his mouth. My ds still does this most of the time. He is getting better, but he still spits out most of what he eats. You'd think he was starving, but he really doesn't act like he's hungry very often. I feed him regularly whether he wants it or not, but I don't think force feeding is going to get us anywhere. He usually takes a few bites then turns his face away or pushes the spoon away. I'm going on and on here but I'm feeling desperate. He's such a sweet little guy and I can't stand the thought that he is not doing well and I have no control over it... if that makes any sense.
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Becky
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MarilynW
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Becky - I will pray for you. My little guy is a lightweight - but my pediatrician is not worried as he is so active and alert. He has hardly gained any weight since 7 months - but he eats a lot and he still nurses. My pediatrician is a Christian and very supportive of natural therapies, nursing etc.
One question - have you tried just putting things things like soft sweet potato, oatios, cheese etc in front of your little guy and seeing if he will feed himself?
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Becky Parker
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Thanks Marilyn. Yes, my ds actually prefers feeding himself. That's usually the case when he's spitting food out. He loves the organic fruit and cereal bars that I recently found. If I break it up on his tray he eats it readily, but most of it ends up in his lap, even though he gets it to his mouth just fine. If I break off a bit and put it in his mouth, he is more successful at actually ingesting it. This tells me he can swallow the food. My dr thinks it's a sensory issue, which is why she wants us to go to the clinic.
It's encouraging to know that your son hasn't gained much but is doing just fine. I think my dr is a bit "alarmist".
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MarieC
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My 3rd dd was tiny....not much gain between 6-9 mos. and only 1/2 lb. 9-12 mos. She was not diagnosed FTT, her iron was low too. She otherwise seemed pretty normal. She stayed tiny for the longest time...not quite scrawny, but almost. Around 3 she got more solid and now at 6 she's very average...still slim but well proportioned. Other kids in the extended families have had the same scenarios.
No advice, just successful outcomes to cheer you I guess.
I'll pray.
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MarilynW
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Becky - I wonder if he has a tongue problem or is it digestive? Hopefully the clinic will figure it out. Did he ever have trouble nursing? It seems odd that he spits everything out. I don't know anything about sensory issues either. Does he put other stuff in his mouth - eg my little guy puts EVERYTHING in his mouth - it is scary as I have to be so careful to check for pennies etc
We will be praying for you.
By the way - Happy Birthday to your little guy - a few weeks back I think. I remember last year when we were complaining to each other in our last few weeks of pregnancy!!!
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Becky Le
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Has your doctor actually watched a feeding? Your son could have a tongue issue or it could be part of a more global issue. My friend's son did this and for him it is part of motor skills problem which has gone on to affect his speech, among other things. Definitely see the endocrinologist but you also may want to make an appointment with your county's Early Intervention specialists for a full evaluation to rule out a more global issue.
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Becky Parker
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Thanks Becky. My doctor did not watch a feeding. She labeled him FTT based on weight gain alone. The more I think about this the more troubling it is. That label has some serious implications, none of which fit our situation.
I think the clinic she recommends will test for the motor skills problem - at least I hope so. There is also a clinic at the university here that another person recommended. It's actually a clinic where they test for speech impairments but apparently they work with infant feeding issues as well. That will be our next step if the clinic doesn't help.
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PDyer
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Becky, I have a friend who had a very similar experience with her youngest child. Her child wouldn't take solids and was losing weight starting around the sixth month of age, but was hitting developmental milestones with no problem.
Her child ended up being diagnosed with celiac disease. She is still tiny, and probably always will be, but the good news is my friend now has the information necessary to prevent long-term damage to her daughter's health. My friend too was upset by the FTT label, but the label got them on the road to the answer, and fewer worries in the long run.
I sincerely hope your child will get a clean bill of health. I will be praying for your piece of mind and for your son. 
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Betsy
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I can't offer any help...but I would consider getting a second opinion from another doctor before you spend too much time/money visiting specialist.
Betsy
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K&Rs Mom
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Betsy wrote:
I can't offer any help...but I would consider getting a second opinion from another doctor before you spend too much time/money visiting specialist.
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I agree. I have a friend whose 2 dd's are both tiny - her 6yo is the same size as my 3.5yo - but developmentally on-track otherwise. Her dr just keeps a close eye on their growth, but isn't worried because everything else is fine. She's tried a few tricks like putting butter in/on everything to get some extra calories into them, but they're just built smaller and there's only so much of that you can manipulate without getting into other nutritional problems.
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websterm
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The speech impairments comment makes me instantly think of a speech pathologist...they are a wealth of information when it comes to "mouth" stuff - even it is a bit of sensory problems your son might be having.
My thoughts are with you and your family.
Marcia
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domchurch3
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I've heard a couple of times in the past few months of babies being Dx with FTT and it turns out they either had celiac disease or wheat/gluten sensitivities. Basically what happens is the wheat and/or gluten inflames the small intestines so that nutrients can not pass through to other systems. Maybe you can get testing done for this. In the meantime you may want to consider taking wheat/gluten out of his diet and yours if your still nursing. All of his low counts on certain minerals and iron makes this all the more probable and worth looking into.
Praying for your peace in this matter.
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LeeAnn
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Becky, I didn't see this thread before. This is what my 2 year old is like. He has gluten-intolerance. If he eats gluten he will hardly eat at all, only drink milk. When the gluten is out of his system (takes days, sometimes a week or more), his appetite will return and he'll eat more like I expect a growing toddler to eat (okay, sort of picky, but occasionally voracious). He also was failure to thrive and ended up being weaned and bottle-fed (probably because of my gluten ingestion, before I was diagnosed with celiac) despite my months-long efforts to get him on the breast only. He would nurse and nurse and not grow much. As a toddler, he seemed to have an aversion to eating solid foods. Now that he is gluten-free I have much better success with him eating meals normally. I hope your doctor visit goes well!
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Becky Parker
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Thanks again everybody. We're going today for the Celiac Disease test. They will draw blood, but I'm not going to have them do the biopsy. I'm praying that the tests reveal whatever the problem is. The next step is the clinic for oral motor problems.
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PDyer
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I'll be praying, Becky.
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Patty
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domchurch3
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If you can, see if the celiac test will also test for food sensitivities. Even if the the test for celiac disease comes back negative, your child may still have a sensitivity for wheat/gluten which will cause the failure to thrive symptoms you describe. I'm pregnant right now myself and since Bernadette's birth 6 years ago I've had symptoms of wheat/gluten sensitivity. I'm going to get tested to confirm my suspicions while I'm still pregnant to see if I need to take it completely out of my diet for the sake of this baby. My daughter, all though not small, is very thin and sometimes she gets purple under her eyes which makes me think she may have the same issues, though she's hardly ever sick.
Keep us posted and I will be praying for your peace of mind. I know you'll find the answers.
Blessings!
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Leocea
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Hmm, I'm not sure about the spitting, that sounds like a problem with motor skills. It is hard to tell.
As far as weight gain, my first three children were low weight gain. I am shocked now that they were not considered FTT. My first was 16-18 pounds by 6 months, then the same at 9 months and one year too. We gave him free reign on food, adding butter, etc. He ended up with a weight *problem* at around 8-10 years old. He had no appetite control, because we had always overfed him. He is now almost 15, and has toned down, but has issues with his body image.
My ten-year old and my six year old girls were both so small. They are now 70 and 35 pounds. They were both 16 pounds at one year. My oldest daughter walked at 14.4 pounds!!
My youngest was completely different. She was huge, and is still larger than they were at this age. She grew very quickly, with huge rolls and chubs. I almost didn't know what to do!
All were nursed, with solids at at about 4-6 months. My biggest one refused solids until 10 months. Birthweights were from 6/11 to 7/10. Not huge, lol.
I am really hoping that we are blessed with more, and that they have no weight *problems*. I say it like that because looking back, my first three children didn't *have* a problem. They were fed the same as my larger child. All are very healthy, and normal kids.
I know that your son may have different issues, with swallowing or something like that. I just wanted to reassure you that sometimes, *nothing* is wrong when their rate of gain is low. Sometimes, it is just that particular child. If I had had three of my fourth child, then a smaller one, I would have thought they were abnormal. Instead, the chubby one seems like the oddball here. She is fun and squishy to cuddle, though. :-)
Good luck with the dr's visits, I know it can be stressful when you are worried about your child!
In Christ,
Leocea
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Becky Parker
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Thanks for your prayers and advice everyone. I have to admit, except for finding out if there is a food intolerance, I wish I hadn't taken this dc to the doctor. This has caused so much stress. I think I'm battling with depression, all because this doctor diagnosed my son with FTT. It's not the label, but what it insinuates that bothers me. Apparently, if a dr suspects neglect, they will use this label. It makes me physically sick to even think about. The last thing I would do is neglect my baby's needs. But I can't prove it because the little guy just wont gain weight. He's so happy, active, bright eyed etc...just little. I have talked to so many moms that tell me their child was little too, or that they hit a plateau in their weight gain at the same time. Just venting here...
I just think it's a little scary that a dr can just throw a label out there that causes suspicion like this one seems to. I feel like we have to comply immediately to her every suggestion, even when as a mom, my intuition tells me it's wrong (like weaning at 8 months!).
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MarilynW
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Dear Becky
I have been thinking of you and praying - I know exactly how doctors can cause so much trouble with unjustified labels. It is so hard when it is our little ones, as we want to do what is best for them. (I had preemie twins that I was forced to stop nursing as they told me they would never grow without formula - in retrospect I think "what garbage" but when they were only 4lbs I just did what the doctors told me. Actually all the doctors told us to terminate the pregnancy as the boys would never make it - but that is another story!).
It must be so upsetting when suspicious labels are given.
I will be praying for you - remember God is in charge, and you have NOTHING to fear, he will bring you and the little guy through this.
Hugs
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Marjorie
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Dear Becky,
My sister is a pediatrician and her youngest dd simply doesn't get hungry. In fact, she HATED eating. Luckily my sister was able to recognize that this was not due to digestive problems. They have to give her medication so that she will eat and even so she really takes no pleasure in it. As a result she is very small and delicate, but BRIGHT, active and developmentally advanced. I will try to ask my sister how they diagnosed her little one, Without the medication she would not have thrived!
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Topic: Failure to Thrive
