So, now what???

grbnik · July 2012

So, we went for our first feeding eval on Tuesday. My DD has been causing me grey hairs- she went down to about 10-12 oz/day (breastmilk) when I went back to work about 6 months ago. We finally found a way to get her to about 22 oz a day- we feed her once an hour, or, at the longest, every 2 (until night, when she grazes). So, our Ped sent us for the feeding eval at our children's hospital. And, of course, they teach me things my DH has been saying all along, let her go and realize she is hungry. Well, unfortunately, I have seen her show signs of hunger about 5 times ever, in the form of fussyness/crying, or sucking on her hands. And, that was going 5 or so hours in between meals. When she eats, she doesn't do more than 4 oz (mostly 2 oz though), regardless of when the last time she ate. So, when she was eating almost every hour, she would eat 1.5-3ish oz. It was awesome! Now, I am to go 2-3 hours, building up to 3-4, so she isn't grazing. So, we are back to eating in the teens. UGH. We worked so hard (along with daycare) to get her to this point. It sucks. And, she still won't put a drop of food in her mouth. We have to put the puree on both ends of her spoon (because, she will put a spoon in her mouth as long as it doesn't have any food anywhere near it!) and have her 'kiss' it. I do see what we are doing, with desensitization, but it is so frustrating. I am not a public crier, but I started bawling and couldn't stop at the eval when she refused to eat. It was a mixture of frustration, sadness that she was crying when I was bringing the spoon to her mouth, and relief that maybe we found someone to help.

The feeding specialist thought that with the amount of sickness that she has been through in her short 8 months ( flu 4 times, 4 ear infections, numerous fevers/vomiting and we think severe reflux) that she has of course built up an aversion (bad tummy with mom forcing her to eat). She kept saying it wasn't my fault (because I kept repeating that I thought it was! ) and was very sweet, but I am so scared that she hasn't gotten on board with increasing her intake, that I am ready to stop (after only doing this for 2 days). The therapist said it may take a week or two for her to start feeling hungry, but she hasn't seemed to show me hunger pretty much ever, so I am not sure why this would start now. I need thoughts- should I stick it out, or go back to the hourly feedings? At least that way, she was eating close to a reasonable amount, and I wasn't feeling super anxious/stressed about her feeding all of the time (which, I try not to show her, but I am sure she picks up on it). It is so bad, that I am thinking of using my employers EAP to get some counseling. Does anyone know if your employer knows if you access that? I am somewhat ashamed that I can't handle this very well.....

Thanks for any thoughts!

ToastieSimons · July 2012

the goal is to get her eating on a schedule. Feeding her every hour will not be sustainable through her life. And by feeding her so often you're not allowing her body to get the rem sleep it needs. You're constantly interfering with her sleep cycles.

There are 2 goals through your feeding clinic. Her intake and her pattern. You can't break one without the other. If you want her intake up her pattern suffers. If you want her feeding on a pattern her intake is going to suffer. The hope is that it suffers short term. You have been feeding her so often that she may not truly recognize hunger anymore. It may take a while for her to start feeling hungry again. The "hope" is that it does return. However, without challenging it you will never know if she can truly feel it. I think it's more of a challenge to see if there are other issues underlying. Also, by feeding every hour you may be doing more harm than good. You never allow her body to digest what is in her gut before shoving more in it. She may not feel hunger when you're feeding her constantly because of the overgrowth of bacteria creating excessive gas. She may feel bloated and full. The same is true of kids that suffer with constipation.

Personally, I know how hard it is to have a child that doesn't eat. DS1 had failure to thrive and now hasn't gained weight in over a year. But, I would need to challenge it to prove to myself if I'm right about them feeling hungry or not. I usually commit to a certain timeline. Give it one week, her weight and hydration won't suffer much in one week if she's still taking in a chunk of her daily requirement. If there has been no improvement or change then reevaluate your methods and report back to the therapist.

grbnik · July 2012

ToastieSimons:
the goal is to get her eating on a schedule. Feeding her every hour will not be sustainable through her life. And by feeding her so often you're not allowing her body to get the rem sleep it needs. You're constantly interfering with her sleep cycles.
There are 2 goals through your feeding clinic. Her intake and her pattern. You can't break one without the other. If you want her intake up her pattern suffers. If you want her feeding on a pattern her intake is going to suffer. The hope is that it suffers short term. You have been feeding her so often that she may not truly recognize hunger anymore. It may take a while for her to start feeling hungry again. The "hope" is that it does return. However, without challenging it you will never know if she can truly feel it. I think it's more of a challenge to see if there are other issues underlying. Also, by feeding every hour you may be doing more harm than good. You never allow her body to digest what is in her gut before shoving more in it. She may not feel hunger when you're feeding her constantly because of the overgrowth of bacteria creating excessive gas. She may feel bloated and full. The same is true of kids that suffer with constipation.
Personally, I know how hard it is to have a child that doesn't eat. DS1 had failure to thrive and now hasn't gained weight in over a year. But, I would need to challenge it to prove to myself if I'm right about them feeling hungry or not. I usually commit to a certain timeline. Give it one week, her weight and hydration won't suffer much in one week if she's still taking in a chunk of her daily requirement. If there has been no improvement or change then reevaluate your methods and report back to the therapist.

Thank you! I think I need to hear that this isn't all for nothing. Just when I think she is getting over 'this' (whatever 'this' is), something happens, like sickness, or teething, and we take a hit with her eating. For the last 3 weeks, we have done the hourly feedings, and I think she is pretty gassy, so what you said makes perfect sense. *She has been gassy most of her life, and has really mucusy poos, even though I cut dairy, but I may need to go back to cutting soy as well.* I will have to just keep reminding myself that we can get through this, it is such a rollercoaster, and I am ready for off! I am sure I am not the only one in life feeling that way sometimes. Good to know that others have been through this too!

Thanks so much! I may have to ask you more questions, as we go along in this process, if you don't mind!

realisticdreams · July 2012

grbnik:
So, we went for our first feeding eval on Tuesday. My DD has been causing me grey hairs- she went down to about 10-12 oz/day (breastmilk) when I went back to work about 6 months ago. We finally found a way to get her to about 22 oz a day- we feed her once an hour, or, at the longest, every 2 (until night, when she grazes). So, our Ped sent us for the feeding eval at our children's hospital. And, of course, they teach me things my DH has been saying all along, let her go and realize she is hungry. Well, unfortunately, I have seen her show signs of hunger about 5 times ever, in the form of fussyness/crying, or sucking on her hands. And, that was going 5 or so hours in between meals. When she eats, she doesn't do more than 4 oz (mostly 2 oz though), regardless of when the last time she ate. So, when she was eating almost every hour, she would eat 1.5-3ish oz. It was awesome! Now, I am to go 2-3 hours, building up to 3-4, so she isn't grazing. So, we are back to eating in the teens. UGH. We worked so hard (along with daycare) to get her to this point. It sucks. And, she still won't put a drop of food in her mouth. We have to put the puree on both ends of her spoon (because, she will put a spoon in her mouth as long as it doesn't have any food anywhere near it!) and have her 'kiss' it. I do see what we are doing, with desensitization, but it is so frustrating. I am not a public crier, but I started bawling and couldn't stop at the eval when she refused to eat. It was a mixture of frustration, sadness that she was crying when I was bringing the spoon to her mouth, and relief that maybe we found someone to help.
The feeding specialist thought that with the amount of sickness that she has been through in her short 8 months ( flu 4 times, 4 ear infections, numerous fevers/vomiting and we think severe reflux) that she has of course built up an aversion (bad tummy with mom forcing her to eat). She kept saying it wasn't my fault (because I kept repeating that I thought it was! ) and was very sweet, but I am so scared that she hasn't gotten on board with increasing her intake, that I am ready to stop (after only doing this for 2 days). The therapist said it may take a week or two for her to start feeling hungry, but she hasn't seemed to show me hunger pretty much ever, so I am not sure why this would start now. I need thoughts- should I stick it out, or go back to the hourly feedings? At least that way, she was eating close to a reasonable amount, and I wasn't feeling super anxious/stressed about her feeding all of the time (which, I try not to show her, but I am sure she picks up on it). It is so bad, that I am thinking of using my employers EAP to get some counseling. Does anyone know if your employer knows if you access that? I am somewhat ashamed that I can't handle this very well.....
Thanks for any thoughts!

M has never taken more than 4z at a time and she is twice your LO's age. We struggled with getting her to eat as well and everytime she was sick we would take 12 steps backwards. At 8 months she would still not eat puree's it was like she just didn't "get" how too. So we gave it a break and tried again around 10 months. I think you should either be focusing on increase caloric intake OR getting her to eat purees, not both at the same time for a child who has had such a hard time with eating.

Is she on formula or just BM? I couldn't tell completely but concentrating formula would help get more in. Have you actually spoke with a pediatric nutritionist ? I know they have them on call for free at Similac (abott?) so that may be worth a try. Or try to find a pediatric dietitian.

I am so sorry you are going through this and it's easy to see how you take it personally, we feel as mothers it's our jobs to feed our children and when they won't eat we blame ourselves. She probably should also have a formal workup by EI to make sure she doesn't have anything going on like eosinophilic esophagitis, or another reason that she doesn't WANT to eat. Doing something like an endoscopy could give you those answers.

grbnik · July 2012

realisticdreams:
grbnik:
So, we went for our first feeding eval on Tuesday. My DD has been causing me grey hairs- she went down to about 10-12 oz/day (breastmilk) when I went back to work about 6 months ago. We finally found a way to get her to about 22 oz a day- we feed her once an hour, or, at the longest, every 2 (until night, when she grazes). So, our Ped sent us for the feeding eval at our children's hospital. And, of course, they teach me things my DH has been saying all along, let her go and realize she is hungry. Well, unfortunately, I have seen her show signs of hunger about 5 times ever, in the form of fussyness/crying, or sucking on her hands. And, that was going 5 or so hours in between meals. When she eats, she doesn't do more than 4 oz (mostly 2 oz though), regardless of when the last time she ate. So, when she was eating almost every hour, she would eat 1.5-3ish oz. It was awesome! Now, I am to go 2-3 hours, building up to 3-4, so she isn't grazing. So, we are back to eating in the teens. UGH. We worked so hard (along with daycare) to get her to this point. It sucks. And, she still won't put a drop of food in her mouth. We have to put the puree on both ends of her spoon (because, she will put a spoon in her mouth as long as it doesn't have any food anywhere near it!) and have her 'kiss' it. I do see what we are doing, with desensitization, but it is so frustrating. I am not a public crier, but I started bawling and couldn't stop at the eval when she refused to eat. It was a mixture of frustration, sadness that she was crying when I was bringing the spoon to her mouth, and relief that maybe we found someone to help.
The feeding specialist thought that with the amount of sickness that she has been through in her short 8 months ( flu 4 times, 4 ear infections, numerous fevers/vomiting and we think severe reflux) that she has of course built up an aversion (bad tummy with mom forcing her to eat). She kept saying it wasn't my fault (because I kept repeating that I thought it was! ) and was very sweet, but I am so scared that she hasn't gotten on board with increasing her intake, that I am ready to stop (after only doing this for 2 days). The therapist said it may take a week or two for her to start feeling hungry, but she hasn't seemed to show me hunger pretty much ever, so I am not sure why this would start now. I need thoughts- should I stick it out, or go back to the hourly feedings? At least that way, she was eating close to a reasonable amount, and I wasn't feeling super anxious/stressed about her feeding all of the time (which, I try not to show her, but I am sure she picks up on it). It is so bad, that I am thinking of using my employers EAP to get some counseling. Does anyone know if your employer knows if you access that? I am somewhat ashamed that I can't handle this very well.....
Thanks for any thoughts!
M has never taken more than 4z at a time and she is twice your LO's age. We struggled with getting her to eat as well and everytime she was sick we would take 12 steps backwards. At 8 months she would still not eat puree's it was like she just didn't "get" how too. So we gave it a break and tried again around 10 months. I think you should either be focusing on increase caloric intake OR getting her to eat purees, not both at the same time for a child who has had such a hard time with eating.
Is she on formula or just BM? I couldn't tell completely but concentrating formula would help get more in. Have you actually spoke with a pediatric nutritionist ? I know they have them on call for free at Similac (abott?) so that may be worth a try. Or try to find a pediatric dietitian.
I am so sorry you are going through this and it's easy to see how you take it personally, we feel as mothers it's our jobs to feed our children and when they won't eat we blame ourselves. She probably should also have a formal workup by EI to make sure she doesn't have anything going on like eosinophilic esophagitis, or another reason that she doesn't WANT to eat. Doing something like an endoscopy could give you those answers.

Wow, this is all good info. She is on BM only; we tried formula, but she wouldn't even open her mouth for that bottle (so, only tried that once, but have been thinking of going back, so see if she likes the test better, but the Ped said it was harder on her stomach to break down, so she recommended sticking with BM). I have our first EI appt scheduled for next Tuesday. I wasn't sure if I should do both, the feeding therapist and EI, but now reading this, I am glad I did. We have taken her to the Ped GI specialist, but since she was gaining, and still wetting diapers (albeit, not much), they didn't scope her. I am hoping that this works, but if not, I guess it is back to the GI doc.

Thanks for your reply! Also, when you said she won't drink more than 4 oz, just curious- how many times a day would she eat at this age? Mine does 2 oz pretty well, then I am coaxing her to do more (yes, totally the wrong thing, I know ) and she will eat about 5 times a day (we offer, she doesn't show hunger signs but maybe once a day). So, on average, she will take 1-3 oz per feeding, about 5ish times a day. Does that seem like what your DD did? Or, is this way out of whack?

st.augbride · July 2012

Ds also never drank more than 4oz (and that was a BIG bottle) until about 14 months of age when we switched from BM to formula, and then at night he started taking 6-8oz, which also coincided with when he slept through the night finally. While on BM, it felt like we were always trying to feed him. Ds was born with severe IUGR, so weight gain was super important, and he just never seemed hungry ever. We've worked with feeding therapists and GIs. The GI and nutritionist really stressed getting him on a schedule. For us it has been really helpful. We also switched to fortified formula (24 cals/oz) and pediasure at around 14 months after meeting with the GI (he also does the feeding clinics at DC Children's). So now ds has a 4-5oz bottle 1-2 times per day (before naps, usually only takes one bottle these days) and we offer a bigger bottle before bed, from which he takes 4-7oz. I'm in no rush to stop the bottles at this point since he needs the cals. We treat the bottles as his 2-3 "snacks" for the day and then he gets 3 meals, all in the highchair, with pediasure as his drink there. He is extremely picky with what he'll eat, but we've found a few things that work (high-cal yogurt, cheese, crackers, fruit sometimes). Right now we're working with an ABA-style feeding therapist who is having us do very specific food trials at home (I can describe in detail if you're interested). I was skeptical of their original plan, which totally didn't work, but we modified it with the therapist based on what we felt might work and I'm excited with how well it's going so far. The one thing I've learned with feeding is that it is a slooooooooow, ongoing process and you just need to push aside the frustration (hard to do, I know!) and find as much patience as you can. Ds was a grazer for a long time, and while I know the schedule has helped, I will say that because of his small size, especially belly, and GI issues, I think he really needed to be a grazer for a long time. We naturally transitioned to more of a schedule not just from the GI but also with ds's cues. He was ready; before that he wasn't. While he's still low on the weight chart, he's growing great so that's what I focus on. He started off less than 1st percentile adjusted age for weight and height and is now 30th actual height and 7th weight, which I'm psyched about! I think if you can space feedings out to 2-3 hours, that would be great, but if it's too much for your LO, then you might need to be very gradual about it. Is LO on prevacid? I know ds needed a higher dose to help him out, and we saw a big improvement after that. I think this is just hard in general, and I only hope it gets easier over time for all of us!

annibes · July 2012

My first question in cases like this always relates to whether there is an underlying issue like pp said. Reflux? Aspiration/weak swallow? I agree a scope or a swallow study might be beneficial. Personally, I prefer the modified barium swallow because you get a dynamic view of the liquid being swallowed and you don't have to jam a scope up the nose and down the throat, but if you need a really good look at the esophageal muscles a scope can do that and get an idea of how the swallow muscles are functioning, as well.

Hang in, OP. Feeding issues are so stressful on the whole family- I hope you get some answers and see results soon!

realisticdreams · July 2012

grbnik:
realisticdreams:
grbnik:
So, we went for our first feeding eval on Tuesday. My DD has been causing me grey hairs- she went down to about 10-12 oz/day (breastmilk) when I went back to work about 6 months ago. We finally found a way to get her to about 22 oz a day- we feed her once an hour, or, at the longest, every 2 (until night, when she grazes). So, our Ped sent us for the feeding eval at our children's hospital. And, of course, they teach me things my DH has been saying all along, let her go and realize she is hungry. Well, unfortunately, I have seen her show signs of hunger about 5 times ever, in the form of fussyness/crying, or sucking on her hands. And, that was going 5 or so hours in between meals. When she eats, she doesn't do more than 4 oz (mostly 2 oz though), regardless of when the last time she ate. So, when she was eating almost every hour, she would eat 1.5-3ish oz. It was awesome! Now, I am to go 2-3 hours, building up to 3-4, so she isn't grazing. So, we are back to eating in the teens. UGH. We worked so hard (along with daycare) to get her to this point. It sucks. And, she still won't put a drop of food in her mouth. We have to put the puree on both ends of her spoon (because, she will put a spoon in her mouth as long as it doesn't have any food anywhere near it!) and have her 'kiss' it. I do see what we are doing, with desensitization, but it is so frustrating. I am not a public crier, but I started bawling and couldn't stop at the eval when she refused to eat. It was a mixture of frustration, sadness that she was crying when I was bringing the spoon to her mouth, and relief that maybe we found someone to help.
The feeding specialist thought that with the amount of sickness that she has been through in her short 8 months ( flu 4 times, 4 ear infections, numerous fevers/vomiting and we think severe reflux) that she has of course built up an aversion (bad tummy with mom forcing her to eat). She kept saying it wasn't my fault (because I kept repeating that I thought it was! ) and was very sweet, but I am so scared that she hasn't gotten on board with increasing her intake, that I am ready to stop (after only doing this for 2 days). The therapist said it may take a week or two for her to start feeling hungry, but she hasn't seemed to show me hunger pretty much ever, so I am not sure why this would start now. I need thoughts- should I stick it out, or go back to the hourly feedings? At least that way, she was eating close to a reasonable amount, and I wasn't feeling super anxious/stressed about her feeding all of the time (which, I try not to show her, but I am sure she picks up on it). It is so bad, that I am thinking of using my employers EAP to get some counseling. Does anyone know if your employer knows if you access that? I am somewhat ashamed that I can't handle this very well.....
Thanks for any thoughts!
M has never taken more than 4z at a time and she is twice your LO's age. We struggled with getting her to eat as well and everytime she was sick we would take 12 steps backwards. At 8 months she would still not eat puree's it was like she just didn't "get" how too. So we gave it a break and tried again around 10 months. I think you should either be focusing on increase caloric intake OR getting her to eat purees, not both at the same time for a child who has had such a hard time with eating.
Is she on formula or just BM? I couldn't tell completely but concentrating formula would help get more in. Have you actually spoke with a pediatric nutritionist ? I know they have them on call for free at Similac (abott?) so that may be worth a try. Or try to find a pediatric dietitian.
I am so sorry you are going through this and it's easy to see how you take it personally, we feel as mothers it's our jobs to feed our children and when they won't eat we blame ourselves. She probably should also have a formal workup by EI to make sure she doesn't have anything going on like eosinophilic esophagitis, or another reason that she doesn't WANT to eat. Doing something like an endoscopy could give you those answers.
Wow, this is all good info. She is on BM only; we tried formula, but she wouldn't even open her mouth for that bottle (so, only tried that once, but have been thinking of going back, so see if she likes the test better, but the Ped said it was harder on her stomach to break down, so she recommended sticking with BM). I have our first EI appt scheduled for next Tuesday. I wasn't sure if I should do both, the feeding therapist and EI, but now reading this, I am glad I did. We have taken her to the Ped GI specialist, but since she was gaining, and still wetting diapers (albeit, not much), they didn't scope her. I am hoping that this works, but if not, I guess it is back to the GI doc.
Thanks for your reply! Also, when you said she won't drink more than 4 oz, just curious- how many times a day would she eat at this age? Mine does 2 oz pretty well, then I am coaxing her to do more (yes, totally the wrong thing, I know ) and she will eat about 5 times a day (we offer, she doesn't show hunger signs but maybe once a day). So, on average, she will take 1-3 oz per feeding, about 5ish times a day. Does that seem like what your DD did? Or, is this way out of whack?

Because she was early they told me in the hospital even if I BF I had to supplement. When she had zero ability to latch and remembering P's difficulties and pumping and trying to imagine how much time it would take to pump and take care of a toddler I decided to just go with formula.

It is true that formula is harder to break down, which is why in general BF babies want to eat more often, especially in the beginning. It seems like their is a reason she doesn't WANT to eat. I would go back to GI. Gi's are weird, the one who saw P did nothing and she puked CUP FULLS at a time, maxed out on zantac and prevacid. The one we took M too was proactive in wanting to make sure everything was OK down there. She had an upper gi when she was a few weeks old to rule out pyloric stenosis bc of feeding difficulty/spitting up so the next step was an endoscopy.

I'm trying to think at 8 months she probably would WANT a bottle every 3 to 4 hours. Are her eating habits the same if she's eating from the breast vs bottle?

Personally, it just seems odd to me that she doesn't want to eat, babies get hungry and then they get mad. I think something is being over looked.

GL

Shayna0182 · July 2012

Feeding has always been a real struggle in our house. Ds was a preemie, and was on a feeding tube in the nicu, until just before he was released at 5 weeks old. He had silent reflux, and came home on Prilosec, and was taking Neosure. Besides not having the suck, swallow, breathe reflex down, it would take us like 45 minutes to feed him 2oz.

He still wouldn't take more than 3-4 oz until about 6 months and then we switched to soy formula. Then he started taking about 6-8 oz, but he still had major sensory issues so eating solids was a bad time too. Seriously, then best thing we ever did was start working with an OT once a week.

I agree, I would definitely get a consult with a GI. It wouldn't hurt, and you don't want to go down the path of associating pain with eating.

grbnik · July 2012

Thanks all for the posts- this is the most I have seen from parents about this. I have asked all around- our daycare, the Ped, my friends and family, and everyone is like- 'oh, if she is hungry, she'll eat.' Yeah, that isn't happening. I had no idea about EE, and it makes me wonder if she has this (when we go to steak houses, and such, my dad has started coughing/chocking on his steak and has to go to the restroom, to 'purge' (Sorry- TMI). We always thought it was because he ate too fast, or too much, or had one too many beers but, he said that his aunt also has this- so I am now putting pieces together. This happens more often for him now). Also, St. AugBride, can you send me some stuff on ABA therapy? I would appreciate it! My email is: grbnik at aol dot com.

We have been keeping up with DD's prevacid (she gets 7.5 mg/twice a day), but it still seems like she is refluxing several times (she burps, then coughs a lot, she has very liquidy burps and she still spits up from time to time, when she has eaten too much for her belly). The therapist suggested several things, and said to take it slowly, but I am of course wanting to see change, so what did I do? I did 3 things at once. DD has to eat in her bouncy (it is the only way we can get her to take a bottle), so we moved that to the kitchen where we eat, got rid of all toys and tv (she would only eat if the movie Rio was on in the background, it is bizarre) and I tried to cut down on night feedings and comfort her, rather than stick my boob in her mouth. Well, she went down to 1-2 night feeds a night at first (mostly her, she just wasn't interested) and I moved her in to the kitchen, no distractions. She went WAY down with feeding (which, is what the therapist said would happen) but I wasn't comfortable, so I moved her back in to the living room, and we are trying to just stretch out the times of the feedings (another change) from every hour to 3 hours. I think we just needed to do one at a time. She still isn't eating a ton, but she is back to watching the Rio movie, and doing a lot better. Next goal, break the tv habit. I feel that this is going to be a big uphill battle!

Thanks for all of the help everyone! I think I just need to keep plugging away. We have a follow up GI appt on the 16th, so I think we will start there. And, I will try to stick with what the therapist is trying to help us with!

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