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support for infant with food intolerance/ failure to thrive / poor feeding

2K views 25 replies 8 participants last post by  ourdayourjourney 
#1 ·
Hi. I was looking for some support with anyone who is dealing with food intolerance, failure to thrive and poor feeding with their infant. My little one's growth started declining at 4 months. Failure to thrive was diagnosed at 9 months when he fell off growth chart. My ped wanted me to nurse and then offer a bottle, thinking I was not producing enough milk. I just knew that this was not the case and started making appointments with specialist. I had a long trip to a gastro specialist so I had to pump and we discovered that day, that my little one was only drinking 1 ounce of milk at a time, which allowed him to be diagnosed with poor feeding. We are egg and dairy free. We are working with a feeding team and a great group of doctors, which I am thankful about, but I thought we would discover what the problem was and it would be resolved. My little one has inched up onto the growth chart at 4%, but I am learning that poor feeding is not something that is fixed quickly. Please share your story or any advise you have.
 
#4 ·
I'm so sorry you're going through this. I had a horrible feeder as well, and he was never able to extract much milk from me at a feeding. So, I ended up exclusively pumping to ensure that he got enough BM from me. It was a royal pain, but it worked for us better than me nursing, then pumping afterwards and giving him a bottle of EBM. He also couldn't tolerate any type of formula (even Neocate) so it was either EBM or nothing in our case! Even with a bottle, we had to go to a faster flow nipple for him to be able to eat in a timely manner...he just never had a good suckle at all.

Hang in there!!
 
#5 ·
i'm at ccmc.

nothing has been said about trouble nursing, everything seems to be pointing to behavioral. i also have been dairy free since he was 5 months and egg free since 9 1/2 months.

as far as behavior, he nurses all through the night and has huge wet diapers. since birth, i have nursed him through the night. he has *never* slept through the night. prior to discovering that he only drinks 1 ounce at a time, he always went to the breast for every feeding.
 
#6 ·
I don't know how helpful this is to you, but I just learned that babies only digest their carbohydrates in the mouth. My sister is working on her Ph.D. from Emory in nutrition and she brought home this news to me the other day. From what I understand, adults produce the enzyme to digest carbs in their mouths as well as in the pancreas. Babies do not produce it in the pancreas yet, so they only produce it in their mouths. My son was always a very slow eater - nurse, sleep, nurse, sleep... I would massage his jaw to try to get him to keep suckling, in hopes that he would eventually get full and give me a break! People said that babies should nurse every 2 hours, and that was true only to the extent that he would only give me a few minutes BREAK from nursing every 2 hours. I'm sure you're already giving your little one as much time as he needs to eat, but you might think about letting him feed slower if he wants to, because maybe letting the milk sit in his mouth a little will help him to digest it better. Something to consider. Also, have you tried any solids, such as coconut milk or avocado? Those are high in fat and easy to digest. Coconut milk is very unique in that it has medium chain fats which are hard to find elsewhere and very easy for the body to digest.
 
#7 ·
I'd get him evaluated by a lactation consultant who is very knowledgeable in tongue ties. Lots of medical practitioners ignore that possibility - and if it is that, it's often a very quick fix.
 
#10 ·
If she's at CCMC, she may be near Elizabeth. Does anyone remember if she's knowledgeable about tongue ties? Or would have someone to recommend. I can't remember if hers had one or not but I thought she did.... I actually had better luck with a GI in N. Haven associated with Yale, than I did at CCMC. CCMC was good if the issue was milk/soy. And the nutritionists were good about what to avoid, but not about what TO eat. I can recommend DD2's GI if you want a second opinion. She was very good/supportive.

Have you tried cutting things out of your diet?
I agree about getting the tongue tie checked.
And seeing how much you can pump is not necessarily a good indication of what the baby is eating if that's how they did it.
If there are a ton of wet diapers at night, shouldn't that be an indication that she's getting a lot to drink at night (more than an ounce?).
 
#11 ·
when we were evaluated, a lactation specialist was there. i guess everything pointed to poor feeding, have a lack of interest in feeding. if my little one is a little awake, he is not interested in nursing. and thus the reason behind him failing to thrive.

with tongue tied would the baby nurse well at drowsy and night times better? my little one nurses well at night. he definitely has a different latch than my daughter did, so i do not know, but I will ask. we do put a larger overnight diaper on him and it used to get changed during the night and first thing in the am (so 2 full diapers overnight). now it gets changed once in the am, because he is nursing less over night due to a change is his solid feeding schedule (3 meals, 3 mini meals a day) and he may be self weaning.

sometimes, i can get in a little nursing before or after a nap. we walk him around until he gets drowsy or catch him before he is a wake. right now, we are trying to keep up my supply and keep him nursing (or me pumping) because we do not have another plan. he literally will drink 1 oz of breastmilk from a bottle/cup at a time. it takes us a few hours to get him to drink 3 oz. and he will only take sips of soy formula in a cup.

kjbrown92- did you have intolerances or suspect any? my little one has had an upper endoscopy and allergies were ruled out. if you would not mind, please email me your dr. I can help but wonder if we are missing something.
 
#12 ·
I think anything is possible with tongue tie. And FWIW, I had to seek out a lactation consultant that had a clue about tongue ties and even then she wasn't sure he had one.

The doctor who is *the* grandmother of tongue tie is on Long Island. If you wanted an evaluation by someone you really wanted to be confident in, I would go see her. Her name is Dr. Betty Coryllos. All she does is clip tongue ties a couple of days a week. She's a wonderful woman. We had our sons clipped at 8 months, I think.

Just thinking out loud, maybe there is a flower essence or a homeopathic remedy that might help stimulate his desire to eat. If you do a search for a member named Paserbajorne (sp?) she is very knowledgeable in this area. Her daughter had feeding issues, which she successfully overcame via alternative methods and she knows about flowers & homeopathics.

It's possible that your son had some sort of birth trauma that might be causing this. So maybe CST would help. Like maybe he has some constriction, which structural work might be able to fix. Again, contact PB because she also knows a fabulous CST in CT and might be able to refer you.

Can someone PM PB website to this mom? Maybe she can contact her that way.
 
#13 ·
Quote:

Originally Posted by ourdayourjourney View Post
with tongue tied would the baby nurse well at drowsy and night times better? my little one nurses well at night. he definitely has a different latch than my daughter did, so i do not know, but I will ask. we do put a larger overnight diaper on him and it used to get changed during the night and first thing in the am (so 2 full diapers overnight). now it gets changed once in the am, because he is nursing less over night due to a change is his solid feeding schedule (3 meals, 3 mini meals a day) and he may be self weaning.

sometimes, i can get in a little nursing before or after a nap. we walk him around until he gets drowsy or catch him before he is a wake. right now, we are trying to keep up my supply and keep him nursing (or me pumping) because we do not have another plan. he literally will drink 1 oz of breastmilk from a bottle/cup at a time. it takes us a few hours to get him to drink 3 oz. and he will only take sips of soy formula in a cup.
But I didn't think kids sucked the same bottle vs. breast? My DD1 never took a bottle at all. Interesting that he eats more when he's sleepy. Not sure what that means exactly.

Quote:
kjbrown92- did you have intolerances or suspect any? my little one has had an upper endoscopy and allergies were ruled out. if you would not mind, please email me your dr. I can help but wonder if we are missing something.
Maybe allergies were ruled out but not intolerances? My DS had an upper GI at CCMC, but not an endoscopy. I had two endoscopies that showed nothing, and apparently I have intolerances, so not sure if endoscopy catches all intolerances. Yes, my kids both had food intolerances. When we went to CCMC with DS, he was milk/soy intolerant, and supposedly outgrew them at 13 months (in-office challenge) and he got them back at 18 months. We've been on and off that rollercoaster since then and he's 9.5yo now. He has many more intolerances than previously suspected and now he's finally healing. I did an elimination diet with DD2, got her off the reflux meds, eczema cleared, etc. and she was on about 20 foods when I went to the GI in N. Haven with her. I brought her all my food journals and her diet, and she was very supportive. Told me I was doing a good job and she didn't need to scope her to know that she probably had inflammation (hmmm.... maybe the scope would have shown inflammation in your case if there were intolerances? is there always inflammation?). To keep her on the restricted diet for at least 6 months before adding new foods, and to call her any time.

Quote:

Originally Posted by chlobo View Post
Just thinking out loud, maybe there is a flower essence or a homeopathic remedy that might help stimulate his desire to eat. If you do a search for a member named Paserbajorne (sp?) she is very knowledgeable in this area. Her daughter had feeding issues, which she successfully overcame via alternative methods and she knows about flowers & homeopathics.

It's possible that your son had some sort of birth trauma that might be causing this. So maybe CST would help. Like maybe he has some constriction, which structural work might be able to fix. Again, contact PB because she also knows a fabulous CST in CT and might be able to refer you.

Can someone PM PB website to this mom? Maybe she can contact her that way.
It's on her signature now, so look for one of her posts.
Also a great osteopath for CST type manipulation is Dr. Moorecroft in Glastonbury. He's been helping my son's digestion issues.
Panserbjorne did a custom flower essence for my DD2 that helped stimulate her appetite so that's a good idea.
Let me find the name of that GI doctor [I looked in my records and can't find it, I just sent an email to my ped asking them to look in her file. I'll let you know].
 
#14 ·
did they recommend you have an endoscopy?? would that affect your little one?

he had no inflammation.

poor feeding is behavioral. so he has a stronger desire/need to be doing other thing rather than nurse. for instance, i'll nurse when he is drowsy and as soon as he gets a little awake, he's off the breast and the next instant he is completely awake, grabbing for my bed headboard, climbing up me to grab at it. and there is absolutely no change of getting him to latch back on.

thank you for the dr names. he does not take insurance
 
#15 ·
Quote:

Originally Posted by ourdayourjourney View Post
did they recommend you have an endoscopy?? would that affect your little one?

he had no inflammation.

poor feeding is behavioral. so he has a stronger desire/need to be doing other thing rather than nurse. for instance, i'll nurse when he is drowsy and as soon as he gets a little awake, he's off the breast and the next instant he is completely awake, grabbing for my bed headboard, climbing up me to grab at it. and there is absolutely no change of getting him to latch back on.

thank you for the dr names. he does not take insurance

I know Dr. Moorcroft doesn't take insurance. I pay for it through my Health Savings Account, because he's the only doctor that has actually helped me or my son.
How old is he?
have they looked at malabsorption type things? or do they think it's all due to poor feeding?
 
#16 ·
they do not want me to eliminate anything else, so it seems to be poor feeding.

he has recently went back on the growth chart, we are feeding him 3 meals and 3 mini meals, he gets 1/2 t olive oil with each meal and 1 oz of a high calorie soy formula and we have introduced high calorie food. so i think his weight gains are from that. he must be absorbing.

the day we went to see our gastro dr i had to pump for the long car ride. that is when we learned that he was only taking 1 oz at a time and the dr seemed to know exactly all the other symptoms he was having. poor feeding, gastro, nutrition all seem to be connected
 
#17 ·
Quote:

Originally Posted by ourdayourjourney View Post
they do not want me to eliminate anything else, so it seems to be poor feeding.

he has recently went back on the growth chart, we are feeding him 3 meals and 3 mini meals, he gets 1/2 t olive oil with each meal and 1 oz of a high calorie soy formula and we have introduced high calorie food. so i think his weight gains are from that. he must be absorbing.

the day we went to see our gastro dr i had to pump for the long car ride. that is when we learned that he was only taking 1 oz at a time and the dr seemed to know exactly all the other symptoms he was having. poor feeding, gastro, nutrition all seem to be connected
Honestly, I'd get a second opinion. Try to find Paserbajorne (sp?)'s information. She went through very severe feeding issues with her daughter. They wanted to put in a tube to feed & she was able to avoid that.

Who told you it was behavioral? Maybe he's physically uncomfortable while eating so has decided to do other things rather than eat. When he's sleepy, he notices less.
 
#18 ·
Quote:

Originally Posted by chlobo View Post
Honestly, I'd get a second opinion. Try to find Paserbajorne (sp?)'s information. She went through very severe feeding issues with her daughter. They wanted to put in a tube to feed & she was able to avoid that.

Who told you it was behavioral? Maybe he's physically uncomfortable while eating so has decided to do other things rather than eat. When he's sleepy, he notices less.
Thank you for the support and information for me to follow-up on. yes, his poor feeding has been determined by behavioral. he is always on the go, walking, running, never sits but only in highchair. he used to have gas, fussiness, spitting up but that seemed to be resolved with getting my oversupply in balance with his needs and the spitting up stopped when I eliminated milk proteins from my diet. i mean there could be another intolerance, i guess we are working on high calorie foods and seeing if that has any effect on his growth. I just am so tired of the do this and wait and see.

i was wondering if only drink 1 oz of milk a time has been experienced with any infants with allergy or intolerance.
 
#19 ·
Quote:

Originally Posted by ourdayourjourney View Post
i was wondering if only drink 1 oz of milk a time has been experienced with any infants with allergy or intolerance.
ds1 (formula fed- ige to dairy, with multiple intolerances) only ever drank 2-3 ozs at a time until he was over 1 yo, except on a hypoallergenic formula
 
#20 ·
I'm still confused about the 1oz at a time thing. Both of my kids have been fully breastfed and would NEVER ever ever take more than one ounce from a bottle. I'm just confused as to why they are certain that he's only getting that much from nursing. Did they weigh him before and after a nursing session?
 
#21 ·
the problem is that he is taking exactly 1 oz at a time, whether it is in a bottle or cup. he is self-regulating all the time, not just here and there. and now he is not nursing during the day.

i know i guess i should explain more of the prior history. my son has always nursed every three hours (aside from newborn) and sometimes sooner. nursing were very short, he would nurse briefly and then want to climb up me or crawl on the bed. we did everything to keep distractions minimal, always nursing in the darkened bedroom, sound machine, quiet house.

and he would nurse all night. i had to do a lot of pumping to keep my supply up and going.

we have not been able to weight him before or after as he ends up not nursing.
 
#22 ·
It sounds like the issue is that he will only drink 1oz at a time out of a cup. When he focuses on nursing, he does fine. When he's awake, he can't stay focused.

If that's an accurate summary, I'd find a good infant occupational therapist to consult with. One way to do that for free is to contact the early intervention program in your county - they would evaluate your son and then refer him to appropriate services.

The reason I'm mentioning this is that some babies have sensory issues - problems regulating sensory input, and/or sensory seeking behaviors. It sounds to me like your son might have a combination of both (which is very common). Always on the move, seeking stimulation, avoidance/dislike of certain textures (many sensory challenged babies won't take a bottle or sippy), doing better in the dark (that may be one of the reasons your son nurses better at night), easily distracted - those are all potential flags for sensory issues. Falling off growth charts is common for kids with sensory processing disorder (the umbrella name for lots of different sensory challenges).

The good news is that there is a LOT you can do to help a little one handle sensory input and their sensory needs - and that might have the nice side effect of improving both his daytime nursing and eating.

Here is a list of the variety of symptoms parents notice in little ones with sensory processing disorder (note that many kids only have sensory issues in one or two areas).
 
#23 ·
Quote:

Originally Posted by mamafish9 View Post
It sounds like the issue is that he will only drink 1oz at a time out of a cup. When he focuses on nursing, he does fine. When he's awake, he can't stay focused.

If that's an accurate summary, I'd find a good infant occupational therapist to consult with. One way to do that for free is to contact the early intervention program in your county - they would evaluate your son and then refer him to appropriate services.

The reason I'm mentioning this is that some babies have sensory issues - problems regulating sensory input, and/or sensory seeking behaviors. It sounds to me like your son might have a combination of both (which is very common). Always on the move, seeking stimulation, avoidance/dislike of certain textures (many sensory challenged babies won't take a bottle or sippy), doing better in the dark (that may be one of the reasons your son nurses better at night), easily distracted - those are all potential flags for sensory issues. Falling off growth charts is common for kids with sensory processing disorder (the umbrella name for lots of different sensory challenges).

The good news is that there is a LOT you can do to help a little one handle sensory input and their sensory needs - and that might have the nice side effect of improving both his daytime nursing and eating.

Here is a list of the variety of symptoms parents notice in little ones with sensory processing disorder (note that many kids only have sensory issues in one or two areas).
thank you for the check list and information. we are working with a feeding team that includes an occupational therapist. nothing was said about as well, while nothing was said about sensory processing disorder.
we are on a plan to have different textures of food, to get him working on a cup (sippy or open) and to get him more calories. I'll have to talk to them more about this.
 
#24 ·
I'm just curious. If you already have a plan that you seem to pretty much agreement what are you hoping to get out of this forum?

It seems that a lot of folks have made a lot of suggestions but you keep saying that you've seen someone and you have a plan that it seems like you want to follow. I hope I don't come across as snarky. I'm just curious, that's all.
 
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