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Failure to thrive

post #1 of 33
Thread Starter 
I need help with DD. She is 30 months old, 23 lbs, and 36 in tall. She has not gained weight since Feb. 2006.
March of 2005 she was 11 months, 18.5 lbs. She stayed that weight until Feb 2006 when she shot up to 23.
Background- she was exclusively breastfed until 10 months when I introduced solids. She was weaned at 20 months. She's had an endoscopy and biopsies done and has been dx-ed as irritable bowl. She has persistant diarrhea and is on Bental (dicyclomine) 3x a day at 3 mLs. She currently has no allergies (we are sure). She drinks whole milk. She is also on Neocate Jr (this is what gained those 5 lbs, although she's plateaued again) which is a medical food. She has a great appetite for a toddler and eats very high calorie/ high fat foods.
I'm very concerned at this point. Her gastroenterologist has basically given us the ultimatum of that if she doesn't gain weight by January, we will need to discuss a g-tube for feeding. I DON"T want to do this.
Relactation isn't an option right now- I'm pg. I don't know that that would help anyways, since she was FTT while breastfed.
Help me. What else can I do, ask for, try?
post #2 of 33
When my dd was a baby, she was ftt. She had severe reflux and didn't gain anything from the time she was a year old until she was 2 1/2 when a feeding tube was placed. Has your DD been checked for absorption problems? I would also consider another endoscopy/colonoscopy with biopsies just to make sure they didn't miss anything the first time around.
If you do have to go to a feeding tube, you may want to try a ng tube(in the nose) before you have a g-tube placed. We did this with DD just to make sure she could gain with the feeding tube. There were concerns she wasn't able to gain regardless of caloric intake. Another opinion would also be a good idea.
I feel for you...it is very worrisome to have a FTT child but it does sounds like you are doing what you can with diet(high calorie, Neocate).
post #3 of 33
Thread Starter 
Quote:
Originally Posted by momtothree View Post
If you do have to go to a feeding tube, you may want to try a ng tube(in the nose) before you have a g-tube placed. We did this with DD just to make sure she could gain with the feeding tube. There were concerns she wasn't able to gain regardless of caloric intake. Another opinion would also be a good idea.
(high calorie, Neocate).
Maybe this is a dumb question- but how do you keep an active toddler from pulling out a ng tube? Or a g-tube for that matter? We've had a hard time keeping IV's in her in the past.
post #4 of 33
hi there!
i see you are pretty close to me!
Habve the usual glandular options been tested for? She has been tested for lead, thyroid function, general adrenal function? Ruled out a parasite such as a tapeworm? (eeww,creeps me out to even think about it...)

honestly, what i see as the problem here is the typical Westerm medicin "put a bandaid on the symptoms" kind of thing.
What is WRONG with her?
You don't mention reflux or a lack of eating?
IF she is taking in sufficient calories, then something is WRONG with her....simply giving her more calories via a tube isn't going to FIX the problem, youknow?
IF she is not eating enough...then fine, she needs to eat more, via whatever method you decide upon...
BUT, IF she is getting sufficiant caolries..something is WRONG..she has a lack of Growth hormone..her pituitary glad, adrenals, thryoid...SOMETHING isn't right....In order to actually make her BETTER..you have to figure out what is WRONG, and FIX IT.
post #5 of 33
Quote:
Originally Posted by theretohere View Post
Maybe this is a dumb question- but how do you keep an active toddler from pulling out a ng tube? Or a g-tube for that matter? We've had a hard time keeping IV's in her in the past.
Hi,

My heart goes out to you. What a tough place to be emotionally right now.

My dd has a gtube and I have to say, although I would have never dreamed of having a kid with a gtube before her birth, the tube has been a blessing for her. She has some reflux/hunger issues and the tube has helped her to thrive. I make her a blenderized formula from real foods.

But of course, it would be better not to have a tube. I agree that if she needs a tube, she should start with an NG tube, but you need to schedule a tentative surgery date for gtube at that time. An NG is hard, but sometimes necessary. They are not meant to be long-term. If you decide after a couple of mos that she needs a gtube, you will have to wait a few weeks to get the gtube if the surgery is not scheduled yet. Once you make up your mind to get the gtube, it will seem like an enernity until that surgery date comes up.

Some kids do okay on an NG and leave it alone and don't mind it at all. Others will not want to swallow, may become dependent on it, and it may make feeding issues worse.

But first and foremost, children need nutrition. If she has an irritable bowl, try posting in the Health and Healing forum. They will have some great suggestions that may make her start feeling better so you don't have to deal with tubes at all.
post #6 of 33
Quote:
Originally Posted by bobandjess99 View Post
hi there!
i see you are pretty close to me!
Habve the usual glandular options been tested for? She has been tested for lead, thyroid function, general adrenal function? Ruled out a parasite such as a tapeworm? (eeww,creeps me out to even think about it...)

honestly, what i see as the problem here is the typical Westerm medicin "put a bandaid on the symptoms" kind of thing.
What is WRONG with her?
You don't mention reflux or a lack of eating?
IF she is taking in sufficient calories, then something is WRONG with her....simply giving her more calories via a tube isn't going to FIX the problem, youknow?
IF she is not eating enough...then fine, she needs to eat more, via whatever method you decide upon...
BUT, IF she is getting sufficiant caolries..something is WRONG..she has a lack of Growth hormone..her pituitary glad, adrenals, thryoid...SOMETHING isn't right....In order to actually make her BETTER..you have to figure out what is WRONG, and FIX IT.
I totally agree with this! You need to keep a journal of her intake over a week and take that back to the doctor. For nursing kids, they need to be weighed before and after each feeding to count in breastmilk.

My own dd-- we know she has or had reflux-- but beyond that her GI is not concerned with the fact that she can't handle a normal volume of food for her age, that she seems to lack hunger or fullness feelings and feels nausea often. As long as she's getting the calories through the tube, he is happy. I am in the process of getting a new GI for her who is willing to dig a little deeper and find out what we are dealing with beyond reflux. Because I feel there are some things going on and my heart has never lead me wrong. We also have an appt with a geneticist and we may be getting her hormone and metabolism tested, too.

If you feel the GI or other doctors are not listening, ask around and see if you can get another doctor who will listen.
post #7 of 33
Thread Starter 
Quote:
Originally Posted by USAmma View Post
Hi,

My heart goes out to you. What a tough place to be emotionally right now.

My dd has a gtube and I have to say, although I would have never dreamed of having a kid with a gtube before her birth, the tube has been a blessing for her. She has some reflux/hunger issues and the tube has helped her to thrive. I make her a blenderized formula from real foods.

But of course, it would be better not to have a tube. I agree that if she needs a tube, she should start with an NG tube, but you need to schedule a tentative surgery date for gtube at that time. An NG is hard, but sometimes necessary. They are not meant to be long-term. If you decide after a couple of mos that she needs a gtube, you will have to wait a few weeks to get the gtube if the surgery is not scheduled yet. Once you make up your mind to get the gtube, it will seem like an enernity until that surgery date comes up.

Some kids do okay on an NG and leave it alone and don't mind it at all. Others will not want to swallow, may become dependent on it, and it may make feeding issues worse.

But first and foremost, children need nutrition. If she has an irritable bowl, try posting in the Health and Healing forum. They will have some great suggestions that may make her start feeling better so you don't have to deal with tubes at all.
Thanks. I'm not convinced that she has irritable bowl. The dx was made just because of the diarrhea. She also has sleep apnea (recent tonsillectomy seems to have helped) and I can't help but wonder if it's all connected. Is the ped. the one who usually referrs to a geneticist?
We've tried diet, elimination, and homeopathy for her tummy- nothing seems to help. Even with her medicine she says that her tummy hurts.
post #8 of 33
Quote:
Originally Posted by theretohere View Post
Or a g-tube for that matter? We've had a hard time keeping IV's in her in the past.
I forgot to answer this part of the question-- a gtube is like an earring but in the stomach. It hurts to be pulled on, but if it's left alone it feels like a natural part of the body. They learn not to pull on it fairly quickly.

Have you tested for allergies yet? Sometimes allergies will cause the irritable bowel. The intestines get all inflamed and there are loose stools. My dd was just tested for allergies and has been doing a bit better since I started making her own formula that does not have those things in it.
post #9 of 33
Thread Starter 
Quote:
Originally Posted by USAmma View Post
I forgot to answer this part of the question-- a gtube is like an earring but in the stomach. It hurts to be pulled on, but if it's left alone it feels like a natural part of the body. They learn not to pull on it fairly quickly.

Have you tested for allergies yet? Sometimes allergies will cause the irritable bowel. The intestines get all inflamed and there are loose stools. My dd was just tested for allergies and has been doing a bit better since I started making her own formula that does not have those things in it.
Good to know!! I've been reall afraid that if we had to do this she'd rip it out!
Yes, she's had 3 allergy tests- looks neg.
post #10 of 33
I don't understand what the point of the g-tube is if she's already consuming a sufficient amount of calories? Have you taken her to an endocrinologist and geneticist for evaluation? Sometimes these things go beyond GI issues, and the 'fix' has nothing to do with the GI, if that makes any sense.

But I did want to throw something out there to think about, in case you do decide to go with the g-tube. A lot of times it's seen as standard procedure to do a Nissen Wrap that the same time as tube placement. While the tube can be removed eventually the nissen can never be undone.

My son had both a g-tube placement and nissen done at 3 mo. His tube is gone now, but he still suffers due to the nissen. He can't easily throw up when he needs to, and when he does it's so forceful that he aspirates and ends up with pneumonia. He can't burp, and it's constantly causing him pain.

That being said sometimes it's necessary, and the pros outweigh the cons. If your dd is having reflux, or vomiting and it's causing her to not absorb enough calories, then it very well may be necessary.

I wish you the best, whatever you decide to do.
post #11 of 33
Have you had her tested for gluten intolerance? How's her skin?

She sounds a lot like my 2nd son, who has Celiac. When we removed the offending foods, he has shot up in weight and height and is all-around more happy!

HTH!
post #12 of 33
Just wanted to 2nd the celiac idea... it sounds like she eats plenty but isn't absorbing enough. Added w/a IBS diagnosis points at something like Celiac.

Id' ask for a full CBC, lead, etc. plus thyroid, other glands/hormones, and pull all gluten and dairy from her diet. ALL, even the hidden parts.

If the gluten damages her intestines and she can't absorb food (and dairy agitates gluten damage) then she would have IBS symptoms and poor gain.

Does she have dark circles under her eyes? Eczema or other strange rash? Red ring on her anus? Poor sleep? Crazy behavior?
post #13 of 33
Quote:
Originally Posted by theretohere View Post
Maybe this is a dumb question- but how do you keep an active toddler from pulling out a ng tube? Or a g-tube for that matter? We've had a hard time keeping IV's in her in the past.
The ng is more difficult to manage than the g tube but you don't have to have it surgically placed. It is a less permanent way to see if a tube feeding is a solution. My daughter's ng tube did come out but it was mostly during tape changes. As soon as she started to tug on it, she could feel it in her throat and she stopped pulling.

Just to revisit the amount she is eating, it is difficult sometimes to get a good idea of how much actually makes it into her. We had this problem. My DD would eat, just not enough. Also, some kids have a higher caloric need than others but I would want the GI to have a look at absorption problems or a bacterial overgrowth(given the diarreah).
post #14 of 33
One more thing to add...if you do have a g tube placed and an option of doing a Nissen Fundoplication comes up, I would have a very thorough discussion with the surgeon about the complications that come with a Nissen. It is possible to place a g tube without a Nissen...if the Nissen is necessary, you can always go back and have it done after.
post #15 of 33


Wish I had useful advice.
post #16 of 33
Hi. I skimmed through the posts real quickly, because I wanted to reply. I'm going to go back and re-read though.

My DS will be three in one month. He has not gained one ounce since July of 2005!! He is barely 28 lbs. Just last month he grew 3 inches and is now 34", but until that, he hadn't grew any since July of 05 either.

I was very concerned (and still sorta am). My first concern was my DS's head was so big. His head is in the 100 percentile and his body/weight is under the fifth percentile. So I first mentioned his head size to my doc. But she wasn't real concerned b/c DS was developmentally advanced. Over time, I'd say 6 months, he started to "flat line" as she called it. (FTT? I dunno) So she referred me to a pediatric endocrinologist. This was April of 06. They did blood work (a lot, but I don't know exactly what) and they did x-rays. I got those results back in late July of 06. Everything was fine. Then last month, early Sept, one day I noticed his jeans were getting a little short. So I measured him, and he grew 3 inches! So I anxiously weighed him, and sadly, no weight gain, actually possibly a slight loss.

We go back to the endo. next month. I'm really worried about WHY he isn't gaining weight. Everyone tells me not to worry, it's better to be skinny (most of my family and DH's family is slightly to very obese). I have switched him over to raw milk even, b/c my cousin who has chron's is thriving since her family made the switch. I also try to follow a similar diet for my son that she follows...which is very difficult for me. I don't know why my son isn't gaining weight, but my mommy intuition is just telling me "SOMETHING" is wrong.

I'm sorry I have no advice. But I wanted you to know I am right there with you, although my son does not have ANY dx, except "slow growth". Have you been to an endocrinologist? What makes them say IBS? My son has loose stools and goes at least 3x a day, but it's not what I'm used to diarrhea being (like runny). I have ulcerative colitis, so I do have the loose stools like he does. But they said all his test came back "fine". Now I'm wondering if they even tested for colitis/chrones. Mine was dx through a colonoscopy, which they have not done on DS. Hmmmm...... Please keep me updated on what you learn.
post #17 of 33
I too would really, really hesitate before I did a fundo. I'm sooo glad I didn't do that for Nitara even though it was suggested by the surgeon to cure her vomiting. Sometimes the cure can be worse than the illness. I have heard too many stories. It *can* be a good thing for some kids, livesaving even. But more and more well informed doctors are not doing the fundo unless certain criteria are met.

Here's my page on the pros and cons of feeding tubes and the fundoplication surgery, as well as some articles.
http://members.cox.net/sukumaran/Ref...fluxlinks.html

If you go to the main page you will find other pages that I created that show gtube photos and other things.
post #18 of 33
I am so sorry to hear that your child is having so many issues with growth and weight gain.

I would strongly question the diagnosis of irritable bowel syndrome. While not unheard of, it is not common in very young children, and there are usually many more symptoms beyond diarrhea. My 3yo has the upper GI equivalent of irritable bowel syndrome (Visceral hyperalgesia of the stomach and small intestine after pancreatitis) and she has excrutiating pain, diarrhea, vomiting, retching, etc. She's 100% IV dependent, takes 4 pain meds, and so on. While my dd's case is very severe, you would expect some of these other symptoms, at least some problems with eating and pain, if your dd truly did have IBS or some other functional GI problem.

It sounds to me like she may have something else. What I would suggest is having the usual endocrinology labs run. I would also suggest having several tests for absorption and pancreatic function, such as fecal elastase. Many kids with low pancreatic enzymes have chronic diarrhea. This can easily be treated. Also a stool culture and C-diff test to rule out anything in that dept. Your GI should be able to run all the tests...all the endocrinologist will do at the first visit is order the tests anyway. I would also recommend a test for cystic fibrosis, sweat test or genetic study.

I highly recommend going to a specialize GI center for a second opinion. I would recommend only two programs in the Midwest, Cincinnati Children's Hospital and Children's Hospital of Wisconsin in Milwaukee. We've been to both, and pretty much everywhere else as well, and there is a huge difference in the caliber of GI experience at these two hospitals.

As for the tube, it sounds WAY scarier than it actually is. It's actually not a big deal at all, very minor surgery, very easy to use, makes life way easier. Of course no one wants one, but as interventions go, it is really very benign. Ever since Terri Schiavo, people think of feeding tubes as these horrid things only people who are dying or in comas have. It's simply not true. Lots of kids have tubes for lots of reasons. Many of them are typical kids with no other issues. I second the advice above...do NOT do a fundo unless you need it for a life-saving reason like chronic aspiration pneumonia. And a tube is useless if she is not absorbing, so a trial run with an NG might prove instructive.

PM me if you need any other info. (((hug)))
post #19 of 33
Thread Starter 
Quote:
Originally Posted by onlyboys View Post
Have you had her tested for gluten intolerance? How's her skin?

She sounds a lot like my 2nd son, who has Celiac. When we removed the offending foods, he has shot up in weight and height and is all-around more happy!

HTH!
I'm pretty sure that she was tested for celiac when we did her first allergy test. Her skin is very clear- no real rashes, redness, pimples, ect.
post #20 of 33
DS was almost diagnosed as FTT at 9 months...I don't have any advice, mama, but I couldn't read without wanting to send you a ton of warm hugs. I'll be thinking about you and your DD!!!
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