Hello everyone,
I’ve never posted on this forum and am a newbie. I would really appreciate advice from anyone who’s been in a situation like this.
My daughter is 3 (birthday in July) and weighs 21 lbs. She’s always been small, but because she’s always followed her own growth curves, the doctors haven’t been too concerned. DD does have a few health issues – very severe asthma (which landed her on a breathing tube for 6 days last fall) and hearing loss (she wears hearing aids). She’s had ear tubes twice.
She’s been tested for so many things to identify why she has Failure to Thrive. CF, Celiac, growth hormone, thyroid, genetic issues, vitamin deficiencies – everything has been normal. We try to get as many calories in her as possible – her ‘milk’ is half-and-half fortified with whole milk powder and Duocal, but for the most part, she just isn’t interested in eating very much. If she’s not hungry, she doesn’t eat.
The doctors are now talking about putting her on a feeding tube (NG) to see if she can gain weight. We have a trip to Mayo clinic planned for December, because we haven’t loved the care we’ve gotten here (Denver), but I am afraid that Mayo, even if they do find a cause, will still conclude that a feeding tube is necessary to beef her up.
I’m not sure how an active 3 year old will tolerate a feeding tube, plus we’re a little afraid that she will stop eating at all if she’s getting the NG tube nutrition at night. I’m afraid that this will be a ‘stepping stone’ to a g-tube. We’re a bit at odds as to whether she’s ‘just small’ or ‘small, and needs medical intervention.’ I just don’t know what to do.
I appreciate any advice you all have. Thank so much.
PM me - we work with a lot of FTT kids and can give you some help over the next few months - if it works, you can cancel Mayo. If not, you will have lost nothing. Seriously - there is help but it's too much to go into via email so we need to talk by phone.
NG tubes rock... and are (comparatively) super easy to handle / play in/ deal with. (Gtubes are, at least imho, something of a pain), but some people REALLY love gtubes over ngtubes. It really depends on the individual.
If you were trach'd I can definitely understand your hesitance with an NG tube. Trach care is a HUGE pain, and hugely restrictive, and if the durn things weren't lifesaving ;) no one would ever consent to them.
An NG tube, though, is just a little bitty (long) thing that feeds through and down. Some rockin' princess bandaids will keep it from getting caught on stuff... and she can play to her heart's content.
DO head over to Mayo.
We're super lucky to be a few blocks over from our regional Children's Hospital... and it still took months for treatment (ahem, like 6). Sooooo many of my friends spent years dealing with smaller / local places who were just completely ill equiped to deal with their kids. Many things are ONLY seen in Children's Hospitals on a regular basis.
Might they still want to NG (or even G) tube her? Yep.
Might they even want to admit her for a period of time? Yep again.
Neither is the end of the world.
And a HUGE upside is the parent community that surrounds Children's Hospitals. It's like a crash course in nursing and research, and. everyone. gets. what's. going. on. Even if there's no diagnosis, everyone gets the process/ fears/ struggles/ test #204 inconclusive arrrgh - have they done test #a-422? No?/ etc.
Please call Diane B. Sounds like she knows all about this.
Good luck to you and your little one!
Being in this situation with my child, I would go straight for the G-tube. I know it seems like a bigger step but for us, it was so much easier. The NG tube would always get pulled out, rashes from tape. The G-tube is so much easier to take care of. Good Luck.
Check out the Feeding Tube Awareness page on Facebook-- I have a friend with a special needs infant who's found LOTS of help on that page!
Along with what the other moms have shared, I would like to add a little bit different pespective. What is the environment like that your daughter is in? Is there a lot of stress? Is there yelling? Are there things going on around her that are creating fear or stress for her? Are you an anxious mother? Do you feel a great deal of pressure to be "super-mom"? Do you have patterns of fear that she may be picking up on? Is there someone else or something else that is putting a lot of pressure on you or her?
Often we only focus on the physical symptoms and forget to recognize that our environments deeply effect our physical as well as emotional and mental states. You might be really suprised when you take a step back and look at the big picture what other things may be contributing to your daughters physical distress.
My 4 year is pretty tiny too... Very picky eater... And has always been on the tiny side... What I have tried are protein ,vitamins , and whole milk... It seems to be working. I would try that... And document it for a Few weeks first...and if you see no results in that time... Then I would try working with her doctor.
My feeling is, if she is active and happy and not losinig weight, she might just be small. You stated if she is not hungry, she does not eat,which
probably makes her more normal than 1/2 of America. My husband is the
exact weight he was when we met forty years ago. He does not eat if he is
not hugry. Now I am a grazer and will snack if not hungry. So if she is
happy and healthy I would let her be. I am with you on the feeding tube
creating more issues. Then food becomes a real battle. I used to babysit
a little girl who was skin and bones. Hardly ate anything, but was healthy.
She ate enough, I guess, to sustain herself. At 13 she is now a beautiful girl
and is still not a big eater. Golod luck.
I don't really have any advice! The closetst we came to your situation was having to supplement breast milk with a high calorie formula for our daughter and, later adding butter and vegatable oil to her food once she started eating solids. I do reccomend getting a second opinion, as well as seeing a dietician who specializes in dealing with young children as well as a multi vitamin(I;m sure you are doing that already). I just wanted to say I'm so sorry you are going through this-it must be very concerning for your family.
*Forgot to add that our daughter was diagnosed with malabsorption, basically for whatever reason she wasn't able to absorb certain nutrients as well as very little fat. She mysteriously grew out of it and now is a tall(40 inches) slender(33 lbs) 3 1/2 year old.
I just wanted to encourage you not to be afraid of liquid supplementation. Not exactly the same thing but my sister had some handicapping conditions and we were always so against a g-tube bc we never wanted her to lost the ability to eat. But we later found out that it could have been such a blessing bc she could have been nourished and then just eaten what she could handle for pleasure and some more nourishment. By the time we did the g-tube she was really sick and couldn't eat by mouth at all, but as I said it was different circumstances. I think giving her and n/g tube or a g-tube will be ok, then she can just eat whatever she can handle by mouth and gain weight and strength in her own time frame. A g-tube can always come out if it does go that way down the line. I knew a pregnant lady that had to have one bc she literally was so sick there was just no other way for her to get her nourishment and she was able to just eat anything she could for enjoyment knowing that her body and baby were being nourished. It isn't the worst thing and definitely does not have to become permanent. I also knew a young lady with a lung disease who had to have one and she was a super active happy girl, so just talk it over with your doc but don't be afraid it has to be a forever thing. Best of luck to you guys!
I am not one to normally comment, actually I have never commented on anything like this before, but your question hits close to home for me. I have a daughter that will be 3 in November. She currently weighs 22 lbs and wears size 18 month clothes. She has always been small and we have always supplemented her diet. Her main source of nutrition right now is pedia-sure.
We spent the first two years of her life going to doctor after doctor trying to figure out what to do. We have had genetic testing done, chromosome analysis, swallow studies, GI scans, MRI's, you name it, we have probably done it. For awhile we were seeing a group of specialist at our local children's hospital. They tossed around the idea of a feeding tube with us, but decided against it. Finally it was decided that she was probably just small. Her pediatrician keeps a close eye on her and as long as she continues to gain weight they say she will be fine. (I was told that as long as they are gaining weight even if it is small amounts, they are not considered failure to thrive).
I should also add that she was born with hearing loss. Her ABR's had her hearing at 80 decibels when she was born. For some unknown reason her hearing has started getting better. She no longer wears hearing aides, but we still do have some hearing issues. She has also had tubes in her ears twice now.
She definitely has a few struggles, speech being one of them, due to the hearing impairment. She has a speech therapist and an eating specialist that come into our home and work with her a few times a month. We do regular visits with our pediatrician, which is normally just a weight check to make sure she has grown at least a little. We have just accepted the fact that she will always be tiny, and that is okay, because there are worst things in the world. In every other way she appears to be healthy.
I know you have a hard decision, and as a parent, I think you just need to choose what feels right to you. If you do not feel right about a feeding tube, maybe it is time for a second opinion. If your daughter is progressing well mentally and physically (motor skills), then maybe it is that your daughter will be small. If you feel like she is truly struggling and not getting the nourishment she needs for proper brain development then maybe a feeding tube is the way to go.
I don't know how truly similar our stories are, but just from the information you put in your question, it almost could have described my daughter. I hope that hearing from another parent that has been through similar situations will help. Good luck!
Is she a picky eater? If not, try giving her avocado, smoothies with protein powder, those kinds of things. Try to beef her up on your own. (It sounds like you've started trying.)
Beyond that, I have no advice. Good luck mama!
My twins were both Failure to Thrive, but at an earlier age. They both spent a week in the hospital and the requirement was to gain weight every day. All of my kids are skinny. My 8 year old and my Twins who are now 6 all weigh 40 lbs. My 8 year old is not tall for his age and you can see all of his bones. He is just a skinny kid. It runs in the genes of one of our sides of the family.
My husband was skin and bones and very sick up until 4 years ago. One day he couldn't stop passing out and throwing up so I took him into the hospital. They pumped him full of C and NS and he wouldn't stop passing out so they put him in the ICU. Once they quit giving him the C and NS he went back to ok, but broke out in sores like psoriasis all over his body. I took away allergenic foods and in 1 week his skin cleared up. I had them give him a blood test for allergies. They said mild nothing to worry about. I have him on the Celiac diet now and he does not have any sores, hasn't thrown up, beefed up in his body, and no passing out. Now the doctors say he doesn't have a wheat allergy, but if he has cross contamination of wheat he now breaks out in blisters, and if he has direct contamination of wheat he gets very sick to his stomach, passes out, and has issues for a whole day while he takes natural medicine to get the wheat out of his system.
Saying all of this, I would try taking a food allergen away completely from her diet, try wheat first (and it is in everything so you must read labels), do this for a week and see how she does. If nothing changes then try dairy products, then try corn, etc.
I personally would save the tubes for last resort. Hope this has helped and good luck.
Our son was on a feeding tube (NG) from birth until 9 months (he's a heart baby). It wasn't easy because he kept pulling it out, but we did not want a g-tube. I would definitely get a second opinion. My kids have always been small (not on the growth chart), but they are on their own curve. I would definitely look for reason for her being so small--other than she's just not eating enough.
