Feeding Issues? Update... forced to wean? - Page 2

[Mosaic]

Your advice was SO helpful, I thought I'd come back with a mini-update.

We saw the pediatric GI on Tuesday: total.waste.of.time. She basically said that since DD doesn't vomit frequently or have diarrhea, this doctor can't help her. But then of course she still insisted I make another appointment in 2-4 months, referred me to her SLP buddy who works in a different office, and charged me hundreds of dollars because the 3.5 month wait hit the new deductible year.

I'm glad she doesn't think there is anything wrong with DD other than behavioral/developmental issues, but I'd have a heck of a lot more confidence in her assessment if she had paid any attention at all to DD's history. She said DD's issues may very well stem from putting a toy too far into her mouth (um, ok, so I guess she stuck her foot down her throat in utero because we've been dealing with this from the beginning). Yes, DD is below 1% on the weight chart, but "she's always been small." (Again, we've ALWAYS been in feeding therapy, so really???)

But really, hearing your experiences has really made me come to terms with this process and the years we're likely to dedicate to it. It's taken away the panic/urgency I was feeling to FIX EVERYTHING RIGHT NOW and has given me comfort that it's ok for this to take a while, and that we will get there eventually. I hope it's ok if I pop in from time to time to continue sharing experiences and check up on y'all.

[crunchy_mommy]

Good to hear your update, although that sounds like SUCH a frustrating experience, you seem to be taking it much better than I would!! I'm glad YOU seem to be in a good place with this right now though, and definitely would like to hear your updates!

[KimPM]

Originally Posted by Mosaic 

We saw the pediatric GI on Tuesday: total.waste.of.time. She basically said that since DD doesn't vomit frequently or have diarrhea, this doctor can't help her. But then of course she still insisted I make another appointment in 2-4 months, referred me to her SLP buddy who works in a different office, and charged me hundreds of dollars because the 3.5 month wait hit the new deductible year.

Yeah, I would be mad, too. I also would not have set up the second appt (or I might have canceled it later if I felt pressured to set one up right then). What's the point?

Originally Posted by Mosaic 

I'm glad she doesn't think there is anything wrong with DD other than behavioral/developmental issues, but I'd have a heck of a lot more confidence in her assessment if she had paid any attention at all to DD's history. She said DD's issues may very well stem from putting a toy too far into her mouth (um, ok, so I guess she stuck her foot down her throat in utero because we've been dealing with this from the beginning). Yes, DD is below 1% on the weight chart, but "she's always been small." (Again, we've ALWAYS been in feeding therapy, so really???)

Sounds like the GI doc is totally clueless. I'm sure it has nothing to do with getting a toy too far into her mouth. I even had people tell me it was because of breastfeeding my DS! Arrgh. This is why it's so frustrating to be the parent of a child with severe resistance to eating. It's like you get no help, and nobody knows what to do, even the doctors. But there ARE people out there that can help - you just have to move heaven and earth to find them - and they are worth however much you have to pay them. On a previous post you said your new therapist isn't working so well. If it's still not working so well, I'd consider checking around again to find another one. The reason it's so hard to find a good feeding therapist is that it's pretty much an elective course of study for SLPs and OTs. And it takes just the right skill set and personality to do it correctly. You have to find someone who really *loves* to do feeding therapy, not just somebody who CAN do it.

Originally Posted by Mosaic 

But really, hearing your experiences has really made me come to terms with this process and the years we're likely to dedicate to it. It's taken away the panic/urgency I was feeling to FIX EVERYTHING RIGHT NOW and has given me comfort that it's ok for this to take a while, and that we will get there eventually. I hope it's ok if I pop in from time to time to continue sharing experiences and check up on y'all.

Yeah, when I was so thick into it, it was amazing just to hear from anyone who had any sort of real feeding difficulty with their LO. Glad to hear you're settling in for the long haul because this is really a marathon, not a sprint.

Good to hear from you, thanks for the update.

[Mosaic]

Another mini update:

We were sent to a nutritionist to evaluate her weight and diet and come up with a plan. At 16 months, she is 29.25 inches and 17lbs, 15oz: the same weight as a month ago with the annoying pediatric GI. This puts her well below the chart both for weight and for weight-for-height, so we have a bunch of suggestions on how to pack in the calories, encourage her to build an appetite, etc. The nutritionist was experienced, realistic, and downright refreshing: her basic message was to try different things (flavors, feeding schedule, techniques, etc.). We're trying those things now; but progress is slow, as you mamas understand all too well.

Her developmental evaluation was yesterday, and she is sufficiently delayed in both aptitude (feeding and self-care) and communication skills (surprise!) to qualify for services. We're now coming up with a service and goal plan, and they're searching for providers that can help us deal with these issues, preferably in our home or at daycare and at a reasonable cost. I wonder how the speech therapy will go, particularly since DD's primary language exposure at this point is Spanish.

So we keep marching on!

[beachcomber]

If she has sensory issues she may not want a vibrating anything near her mouth. My DD actually couldn't cope with the sound that vibrating tooth brushes made. She didn't have near the problems with feeding that you're talking about but was an exclusive BFer for more than a year then was slow with textures and solids. It's much better now that she's 5 1/2 but, again, i don't think we had much of a problem like you and others here are dealing with.

If you're thickening her milk, I'm guessing it's with an iron-fortified cereal or something similar? The only nutrition she's not getting from BM is iron and vit D. If you can include those in your supplementation, that may help. Iron-deficiency anemia can exacerbate sensitivities and aversions. I only found this out recently and was surprised to learn it, so I thought i'd share it.

Best of luck and I credit you tremendously on your patience and determination. It's a slow path but you and your DD will get there together.

[KimPM]

Originally Posted by Mosaic 

The nutritionist was experienced, realistic, and downright refreshing: her basic message was to try different things (flavors, feeding schedule, techniques, etc.). We're trying those things now; but progress is slow, as you mamas understand all too well.

Glad to hear you have a good nutritionist. I hope some of her suggestions are helpful. Start celebrating any progress, regardless of how small it is. It's always good to be moving forward, no matter how slowly, rather than backward.

[Mosaic]

Another update, for anyone interested...

We did a follow-up speech evaluation at the recommendation of the services coordinator, who thought the general evaluation inaccurately rates bilingual children. The new evaluation showed her as delayed BUT I felt she was gaining ground, so we decided to hold off therapy and re-evaluate in a few months to see how she's progressing. She did, however, fail her hearing screening at all frequencies in both ears, so we have to follow up on that as well.

There has been a bit of a delay as we moved to a new county in Oct., so we have switched her over to the EI team there. She started receiving feeding therapy at daycare, and in 6 weeks has made great progress! She is almost 20 months and is now chewing cheerios and graham crackers! We still have a lot of work to do, but she is doing really well on chewing and laterally transferring really crunchy foods. My only concern is that her milk (and puree) intake has dropped drastically; I'm still nursing, but she's no longer drinking much at daycare, and she's definitely not eating enough solids to make up the difference. Our SLP wants her off of the bottle, but every other option (open cup, straw cup, honey bear, etc.) so far is a no-go. DD has a check-up in 3 weeks, and we'll get her weight and perhaps meet with a new nutritionist then.

Just wanted to share the good news!

[Mosaic]

Aaaaaand I'm back.

At 20 months, DD is 20 lbs, 4oz. Her overall intake of solids and liquids from a cup is very low, but she still nurses a few times/day and a few times/night. The general consensus, from the ped and two SLPs, is that I have to wean her in order to get her progressing in the feeding department.

I'm heartbroken. My first had weaned by this age, but DD is going strong and is still a sweet nurser, not the acrobatic circus act toddlers can be. I don't want to undo or counteract the, literally, HOURS of work we're putting into feeding therapy and practice; but I can't stand the thought of forcing premature weaning. I'm trying to come up with a way to encourage her to eat more during the day, maybe night-weaning for starters? Ugh, I can't think about this more or I'll cry, again.

[christinelin]

Oh, mama...that is so hard. I don't want to second guess your care providers, but I do want you to be sure that you are confident this is the right path. I have a friend who is an IBCLC and she was always furious when she heard doctors saying to wean when a child won't eat other foods. Her logic was why remove a child's only food source before establishing another one? Here's hoping something improves!

[RAED]

Hang in there! and I send virtual hugs!

I just typed a long response to this and my lovely ds and dd ran into me and I hit the wrong button and I think deleted it!

That same ds and dd (now 9yrs. and almost 7yrs.) were labelled "failure to thrive"(I was accused of starving ds at one point!), had GERD, mouth feel issues, would not eat, would only eat 1-3 items of food, nursed and/or would only drink bm mixed w/either top up formula or goat's milk/rice milk, thickened with something - I forget what now!, etc. for the first 2-2.5 years of life. They did, with long weeks/months of gentle encouraging, specialist feeding help, etc. finally swallow. But first they just had to agree to take food in their mouth and that was a big step in itself! They were both delayed in speech and communication - neither talked much at all before 4 years of age and one required splt for the past 2 years, etc. dd needed intensive pt and ot to do all the normal things like sit, crawl, roll, walk. AND they did grow. They are growing. They are living. They do eat... okay, they don't eat like "everybody else's" kids, but consume nutrition they do.

Hang in there. Hang in there. Take encouragement where you can get it. And try to keep a long range perspective if possible. In my case, and again, I'm no specialist, I was told to stop nursing/stop giving bm in order to force my children to eat. I refused as I couldn't imagine taking away their only source of nutrition and what they needed to feel "safe" in order to "force" them to do something that was fearful to them. I found instead a different specialist and she helped me devise various ways to make food more familiar to them and, since they were not indeed "starving", let them take their time to decide to eat. (Well, first step was just to touch the food! Then to take it in their mouth to get used to the feel of it - yes, threw out a lot of muck for a few months! And finally to swallow - when they felt ready to do so). I was so happy when my son swallowed food for the first time!

Of course I'm not there, but when we were being told to wean, we went to a totally different medical person, unconnected with the "team" who were pressuring us, for independent advice and they sent the feeding specialist to us (recommendation) for a gentler approach instead. My son weaned at 23 months and my daughter at 18 months. It was their choice and they did it when they were getting enough calories from what they were taking by other means than bm.

Whatever you end up doing, sending you hugs!

[crunchy_mommy]

Count me in among those who don't want to second-guess your team but feels it's a bit odd to suggest weaning a child who isn't eating... do they really think that will get her to eat? Why? (Maybe they have some solid reasoning behind it, who knows??) To me it makes the most sense to continue nursing her until she is eating well. That doesn't mean you can't extend the time between nursing sessions (so maybe she's more hungry when it's food time??) or encourage her to eat solids before nursing or whatever... but what will they suggest if she still doesn't eat, and your milk has already started drying up or she's forgotten how to latch? You'd have to start formula/Pediasure/whatever, right?? Just thinking aloud here, maybe you've already thought of all these things & asked all these questions...

I'm not sure if I shared my experience upthread or not, but in case I didn't... DS really didn't eat until he was 2. At 14mos he was still basically exclusively breastfed (occasionally put a bite in his mouth & even less frequently actually swallowed it)... At 18mos we started really pushing food and he started eating very very small amounts... maybe half a banana and a piece of broccoli, for the whole day. Sometimes other people (DH, friends) were able to get him to eat a bit more, but still far less than even a typical picky toddler. I just kept nursing him, 20+ times a day. But suddenly at 2yo (almost to the day!) he started eating normally. It happened almost overnight (something must have changed within him -- he also started sleeping way better at the same time). I was able to cut back on nursing a ton & he continued to eat better & better... He's just about 3yo now, still nursing 1-2x/day, and he eats better -- both quantity & variety, he'll eat just about anything!! -- than any other kid I know. For us, continuing to nurse was definitely the best path nutritionally, but also emotionally, because he *needed* nursing so much to be at peace in the world.

[Emmeline II]

Quote:

Originally Posted by crunchy_mommy 

Count me in among those who don't want to second-guess your team but feels it's a bit odd to suggest weaning a child who isn't eating... do they really think that will get her to eat? Why? (Maybe they have some solid reasoning behind it, who knows??) To me it makes the most sense to continue nursing her until she is eating well. That doesn't mean you can't extend the time between nursing sessions (so maybe she's more hungry when it's food time??) or encourage her to eat solids before nursing or whatever... but what will they suggest if she still doesn't eat, and your milk has already started drying up or she's forgotten how to latch? You'd have to start formula/Pediasure/whatever, right?? Just thinking aloud here, maybe you've already thought of all these things & asked all these questions...

It sounds like a theory to me (if she isn't nursing she'll get hungry and then she'll HAVE to eat) and not an evidence based practice.

[fiddlefern]

Oh, big, big hugs.  If you search through the archives from 5 and 6 years ago under my name (if they archive things that long!), you will see that I have been through this journey too.

The "FEEDING TEAM" told me I had to wean.  The nutritionist said that breastmilk's 20 cal/oz wasn't enough- that everything that went into my kids mouth had to be at least 30 cal/ oz.  The child psychiatrist accused me of causing my child's failure to thrive by continuing to breastfeed.  The GI doc told me that if I didn't wean my kid would have to have a feeding tube. 

I called my mom in tears, who reminded me that "weaning" means slowly slowly stopping something.  So when the next therapy appointment came, I told them that I had weaned, because, well, I WAS slowly stopping nursing.  What I actually did (this was at about 14 months) was drop to nursing him three times a day: nap, bedtime, and first thing in the morning (which we continued until he self weaned at 2.5 yrs).  And you know what?  When I took away most of the breastmilk, he didn't eat enough solids to replace those calories.  His growth plateaued and he ended up with the feeding tube.  For two years.  Even though he had a big jump in the charts and then plateaued at the 10th percentile after only 6 months.  There were good things about the whole journey too.  He went from being perilously thin with tertiary malnutrition to being in the 10th percentile for weight.  He had a feeding therapist he liked, and he learned to eat independently.  His reflux was ID'd and treated.

I don't want my story to freak you out, and I DO want to join the general chorus of taking the long term view.  Eventually, your kid will eat.  Eventually, your kid will no longer be nursing.  You love your kid and your kid loves you, and there are many ways to be close, so no matter what you decide on this one issue, there is so much more to your relationship than the nursing relationship.

If you want to continue nursing and you think it's best for your kid, you're the mom.  One thing I did (at the suggestion of mammas on MDC) was put a big dollop of heavy whipping cream in my son's breast milk bottles to bring it up to 30 calories an ounce.  That way, you're getting the caloric punch of formula without the nasty stuff in formula, and WITH all the benefits of breastmilk.  If your kiddo prefers it, you could add coconut oil.

Today my son is 7.  He eats independently, and while he still has some sensory problems with food and is picky, he is at a healthy weight and we don't have to track calories or ounces of liquid anymore!  You should see that kid wolf down pizza.

[KimPM]

Originally Posted by Mosaic 

Aaaaaand I'm back.
At 20 months, DD is 20 lbs, 4oz. Her overall intake of solids and liquids from a cup is very low, but she still nurses a few times/day and a few times/night. The general consensus, from the ped and two SLPs, is that I have to wean her in order to get her progressing in the feeding department.
I'm heartbroken. My first had weaned by this age, but DD is going strong and is still a sweet nurser, not the acrobatic circus act toddlers can be. I don't want to undo or counteract the, literally, HOURS of work we're putting into feeding therapy and practice; but I can't stand the thought of forcing premature weaning. I'm trying to come up with a way to encourage her to eat more during the day, maybe night-weaning for starters? Ugh, I can't think about this more or I'll cry, again.

This is exactly what they were telling me...to get DS to eat, wean him. I didn't believe it, and thankfully so. When he started eating enough solids, he weaned himself down pretty quickly. The last ones he wanted to give up were at night, and I didn't even night wean until he was eating enough solids and had already day weaned himself. So I'm suggesting that you DON'T wean yet! Weaning does nothing to help get them eating. It just doesn't work that way.

When everyone was telling me to wean DS, I had just read on this SN forum a post from another mom who took all the doctors' and therapists' advice, weaned her son, and lo and behold all he would eat was....waffles (which I believe he was already eating before he was weaned).

ETA: I'm remembering that what I did instead of weaning was to offer food first, before nursing.
Edited by KimPM - 1/6/12 at 1:07pm

[Mosaic]

As usual, y'all are right.

After posting, I spent most of the next 2 days crying and obsessing over this decision; and ultimately I decided I can't wean. Not now, not cold turkey, not the way THEY want me to. They even recommended Ferberizing! Like you all mentioned, it just didn't seem right at all, and I know it feels wrong. I look at the role nursing is playing not just in her nutrition but in our relationship and I just can't fathom how painful it would be to both of us to just stop. We did start trying to space out and eliminate a night-feeding or two, and we had gotten them to almost 4 hours apart until she got a tummy bug last Friday and of course it was open season on nursing as long as she was feeling lousy.

And the thing is, her feeding skills have improved SO much. Yes, the quantities are very low and yes, there are a lot of textures she still won't do just yet; but compared to where we were 6 months ago, this is a HUGE improvement. Chances are that in a month or two, she'll be eating more normal quantities; and I just don't see why right NOW, this is the hill they want to die on. If it means more therapy for a longer time, that's well worth the extra security and nutrition she gets from breastfeeding, imo.

I know I have my work cut out for me in defending this decision to her feeding and health teams, but it helps so much to hear your experiences and to have your support. In the meantime, I'm adding calories to everything I can, we're still working on introducing new foods, and we'll get there when we get there.

[crunchy_mommy]

Remember that YOU are in charge and receiving services from THEM... so I know you still feel like you'll need to defend yourself to them, but you are the parent and you have every right to make the decision you're making. If you state your choices with confidence & that 'don't argue with me' attitude, hopefully they'll respond in kind and move on to what THEY can do to help.

[purplepaisleymama]

Hi Mosaic...

 I just wanted to mention that while i was reading your earlier posts I noticed that you mentioned that your dd has a very high palate.... so does my dd.  I had thought that it was just one of those things that my kids had.... until I met with the dentist who lasered my dd's posterior tongue tie.  I had been dealing with some crazy stuff with my dd for the first year of her life...she screamed for most of her first year.  We had her lip tie clipped when she was 10 days old and that allowed her to latch better, but then we didn't realize that she had a posterior tie until she was 5 months old, it was clipped and it helped initially and then she regressed into screaming again.  When she was almost a year old we went to a dentist who specializes in lasering ties and it was an intense change in our dd.  She had been choking with all foods that went in her mouth past the tip of her tongue....she would be unable to move them effectually in her mouth and would refuse to eat.  She has had trouble with all fluids in her mouth, she could always manage thicker gruel type textures better than anything else.  When we spoke to the dentist he explained the issues that having a posterior tie will create.... in utero the fetus cannot press the tongue to the roof of the mouth and therefore they have a high palate (which in many cases makes the child unable to clear foods from that area of the mouth).  The baby cannot easily maneuver fluids in the mouth when the posterior of the tongue is held tight, they are forced to just chance swallowing and choke. 

When our dd was lasered it was an immense change immediately, she went from only eating two foods ( veggies chips that would dissolve in her mouth and not gag her and rice that was boiled to a paste texture) to eating all textures of foods.  Her breastfeeding  changed as well, I did not have to hold her on the breast any longer, she could maintain her latch without my supporting her or my breast. She still has some issues with liquids but it improved somewhat, she is not choking with every bite or swallow of food and drink.  I had not been prepared for her to have any improvement with the lasering, i was just trying whatever we could to help her in any way.  Our dd does have many sensory issues that we are working on, we do have a vibrating brush and a vibrating oral stimulator but she is not as happy with those as a regular tooth brush ( as long as she is the one maneuvering it). 

We went to 4 doctors to ask about her tongue tie.....none were familiar with a posterior tie and when we questioned them they all said that it didn't seem to be a big deal.  We were told that there was no way that a tongue tie that was not to the tip of her tongue could cause her oral issues..... when we finally got to the dentist he sat with us and discussed all of the issues that he had found common in kids with posterior ties.   I am so glad that we decided to research and have this done.... it has helped our dd so much.  Now we are able to concentrate on her sensory issues without being confused by the tie. 

Hope that you find answers soon!! If you would like any more info feel free to ask:)

[fiddlefern]

Mosaic- You sound really clear about your path.  Yay!  That's the hardest part for me- just deciding what direction to head.  It's easy for a feeding team to suggest a solution, but I doubt they have solid research to back what they say, and you are the one who lives with the whole, real, child in question. 

[Emmeline II]

Originally Posted by fiddlefern  It's easy for a feeding team to suggest a solution, but I doubt they have solid research to back what they say, and you are the one who lives with the whole, real, child in question. 

[KimPM]

Originally Posted by purplepaisleymama 

We went to 4 doctors to ask about her tongue tie.....none were familiar with a posterior tie and when we questioned them they all said that it didn't seem to be a big deal.  We were told that there was no way that a tongue tie that was not to the tip of her tongue could cause her oral issues..... when we finally got to the dentist he sat with us and discussed all of the issues that he had found common in kids with posterior ties.   I am so glad that we decided to research and have this done.... it has helped our dd so much.  Now we are able to concentrate on her sensory issues without being confused by the tie. 

I've been wondering recently if DS actually has a posterior tie. He does have issues with food getting stuck, as well as moving food around his mouth. Wondering if it's possible/desirable to clip it now, at age 6. ...just thinking out loud.