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#1 of 42 Old 06-22-2011, 07:28 AM - Thread Starter
 
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I could really use some advice, or even just some perspective. I know our issues are small potatoes, but I don't know where else to go, so I hope it's ok if I post here.

My 14-month DD has had feeding difficulties since day 1. At this point, she weighs about 17.5 pounds and is consuming just breastmilk (thickened) and, on a good day and thanks to months of feeding therapy, at most 8 ounces of stage 1 purees. She does not chew at all, she doesn't move food well around her mouth, she doesn't swallow completely, she holds food in her mouth, blah blah blah.

As the time ticks by with little to no progress in the therapy department (she is VERY resistant, and it seems as though we have regressed in the last 2 weeks), I'm becoming increasingly concerned about her nutrition. I don't grow huge kids (my older daughter is on the lower side of average as well), but DD1 was about this size/weight at 9 months. To boot, last week I got the double-whammy of a mean stomach bug AND the return of my fertility, both of which slashed my milk supply, which had been on the slowdown for about a month anyway.

I guess I'm just wondering how much time we have before I should really worry? Has anyone else BTDT? FWIW, DD has a chromosome 9 inversion and maybe a couple of other genetic blips, but nothing that is thought to cause any issues. She just can't eat.

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#2 of 42 Old 06-23-2011, 05:35 AM - Thread Starter
 
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Nada? Well, either I posted in the wrong place or I'm on my own for this one. yikes2.gif

When I get some answers, I'll come back and update for others' future reference. smile.gif

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#3 of 42 Old 06-23-2011, 08:46 AM
 
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Nope, you're not alone! I read your original post and have been wanting to reply, but haven't had time. I'll try to write something after the kids are asleep tonight.


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#4 of 42 Old 06-23-2011, 06:29 PM
 
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My son has a neurological disorder that impacts his motor skills. He has low muscle tone and poor motor planning; his feeding is severely affected. He couldn't eat for a very long time, and was in the same place your DD was at that age. Liquids and stage 1 purees only. He actually didn't move beyond this until he was over two. It sounds like your DD is already in feeding therapy; do you have confidence in the therapist? At first, my son's feeding therapy just consisted of playing with different sensations in his mouth, like a nuk brush, getting him to tolerate them. That took months. Chewing took a long time, and he still doesn't do very well. He'll chew the first few mouthfuls and then go back to swallowing them whole. (He's almost three now, btw).

 

Although there has been progress, there have been definite ups and downs. When he is sick he stops eating any solids at all; it's just too much work for him to manage when he's already low energy. Before all his teeth came in, the emergence of every tooth was accompanied by a regression; he went off the purees and only had liquids. Could your DD be teething right now? Now he can tolerate foods one day, but not the next. No idea why.

 

Everyone who knows about this stuff has told me that feeding issues are very slow to resolve; that doesn't mean progress doesn't happen, just that it is slow. I've been advised to think in the long term, rejoice in every tiny baby step, and pick battles. Sometimes dinner is ice cream. 

 

It sounds like your biggest concern right now is nutrition. Is your DD seeing a nutritionist? My son's swallowing specialist teams with a nutritionist to make sure my son is getting what he needs. As far as when to worry... it's hard to know. I guess if your DD is getting sick a lot, seems low energy, or isn't growing, then it is time to worry. Track her growth carefully, height as well as weight. Height can be very difficult to measure, but when a child has feeding and nutrition issues, weight alone isn't enough of an indication that someone is getting enough calories. 

 

Have you considered supplementing with formula if your supply is dropping? My son couldn't nurse and I couldn't pump very much (plus, he's adopted so my supply was never going to be the best), so I considered formula a necessary staple in the pantry for a long time. 


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#5 of 42 Old 06-24-2011, 12:22 AM
 
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Welcome! I don't have anything of substance to contribute, but I did want to say that this board moves a lot more slowly than some of the other boards on MDC. It's not uncommon for a post to take several days to get a number of responses. Don't lose heart!


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#6 of 42 Old 06-24-2011, 01:44 AM - Thread Starter
 
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Thanks to you both! Y'all are right: I should really work on my patience. Sheepish.gif

Wild Lupine, thanks for your insight. I think the therapists we've seen are good, as they helped us a lot to get nursing going in the beginning. Of course, it's hard to make progress when I can count on one hand the number of therapy sessions we've actually completed in the last 6 months, since she flips out or shuts down after 20 min. or so most of the time. You'd think the nuk brush is an instrument of torture! lol.gif All of her teeth have broken through, including 4 molars, so I don't think it's teething. The therapists think something else is contributing to her resistance, but we're ruled out celiacs, some allergies, and reflux; and we have an appt. with a pediatric GI late next month (seriously, we had to wait 3.5 months for this appt?).

I broke down and called my lousy ped yesterday, but she was out of town so I got another lousy ped. wink1.gif He said she definitely needs to be monitored more closely and set up a referral for a nutritional consult through the county, to hopefully get a jump on this before we hook up with the ped GI and their nutritionist. He also said I should talk to my regular doc about giving her "a more nutritionally complete food than breastmilk, like Pediasure." Seriously, is there ANY truth to that at all? I have at least a couple thousand ounces of frozen milk to help make up the decline in pumping output for a good while.

I guess I'm having difficulty accepting that this may be something we're dealing with for years. Though maybe I can lay off the guilt a little that progress is slow because I'm a WOHM.

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#7 of 42 Old 06-24-2011, 05:51 AM
 
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I don't know much about your daughter's specific issues, I guess I don't fully understand the scope of what's going on with her (probably just my own ignorance, not your lack of explanation!!)

I do know my DS was incredibly resistant to eating and was basically exclusively BF (not by my choice!) 'til 14mos and didn't start eating REALLY well until he turned 2. He is now an excellent eater, aside from some residual issues with chewing & spitting out certain foods, and I had thought we'd never reach this point!!!

So I don't know that I have any real advice since we aren't dealing with the same kinds of issues, but I will say that breastmilk alone served him just fine and if anything his weight plateaued a bit once we finally got him eating. I'm pretty sure breastmilk is a 'nutritionally complete' food and more calorie-dense than most other options... and did you say you are already thickening her feeds? I would get a second opinion on the Pediasure thing (maybe even don't bother & just disregard that 'advice'?) Is she growing? Is she happy? Does she appear healthy, strong, alert, active, etc.? Those would be my indicators for 'when to worry'...

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#8 of 42 Old 06-24-2011, 09:33 AM
 
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My DS had substaintial feeding issues due to reflux, food allergies, sensory issues, and delayed gastric emptying.  I pumped for him for two years (he exclusively relyed on my BM for at least 18 months). We were in therapy over a year and a half, and it was (and still sometimes is) a very long road. 

 

A few thoughts, definately ask for every referal there is at your ped GI appointment.  Some hospitals have programs for feeding issues. Ask about a developmental ped that could follow her and be like her "case manager" that looks at all the care she is receiving from every doctor/nutritionist..  Ask for a nutritionsit, feeding therapist, etc if you do not already have these in place.  I found the more help I reached out for the better, as some help is better than others! My son had feeding and sensory therapy as part of his refusal was sensory related, I'd also look into that as it seems the longer kids take to eat the sensory issues come into play because the just aren't used to all the new sensations.

 

As far as BM not being complete, I'm not sure about that...definately a question for a nutritionist.  We did start giving him a vitamin (flinstone, crushed up in meds) after a year old to make sure he was getting everything essential..but like I said our DS was almost exclusively on bm for most of his two years. 

 

It is a very long road...somehow our DS magically stopped vomitting sometime a bit before turning two, and that was a huge step tword him eating (would you want to eat if you threw up almost everytime you did?!).  At one point though I did have to accpet that a feeding tube was likely.  Once I accepted that I felt a lot less stress knowing that my son could still be nourished if he refused to eat.  It is the end of the line and a last resort, but it is still an option if all else fails.  Just food for thought...no pun intended..okay, well maybe alittle!


Please update us on your appointment and let me know if you have any questions! Best of luck to you and your sweet daughter!


Hayley, exclusively pumping (eliminating dairy and soy) 2 years now! Proud mommy to:Owyn 2/8/03 and Dominic 10/16/08 (GERD, SPD, pediatric feeding disorder, eczema) # 3 EDD 07/13/11
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#9 of 42 Old 06-24-2011, 10:46 AM
 
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I wanted to respond so that you know you're not alone in these struggles, even though our experiences were not exactly the same.

 

My now-5 yo DD Sophie has Down Syndrome, and we have dealt with a number of feeding issues since her birth. She was a preemie and was O2 dependent for a while, but with a lot of effort, I did eventually get her nursing exclusively at around 3 mos. of age. Then, at 10 months, she had the misfortune of cutting her first 8 teeth simultaneously, which led first to a week-long nursing strike, and then to a severe biting problem. :(  I worked for over 6 weeks to get her back nursing, but she never learned not to bite, and after repeated breast infections (from the bite wounds) and a great deal of pain/anxiety, I was finally forced to switch to exclusively pumping for her at around 11 1/2 months.

 

That's when most of our problems really started. She was still exclusively on breastmilk, had low oral muscle tone, and was an extremely poor bottle/cup/straw/sippy feeder. I tried absolutely everything! At our lowest point, I spent a couple of weeks having to dropper-feed her (a 13 month old!) breastmilk all.day.long. During this period, her weight flatlined and her overall development, both cognitively and physically, came to a screeching halt. It was so incredibly stressful!

 

We were hooked up with a feeding therapist, who eventually got her to take a Haberman feeder, and then started working with us on solids. Oh, and I forgot to mention that she had a dairy allergy, so that eliminated a lot of otherwise good nutritional sources for her. Like your DD, she had a lot of trouble moving food from the front to back of her mouth and would frequently gag or choke, which only strengthened her food aversions. Purees didn't work for her at all at that age. The only foods she would tolerate at first were crunchy things that dissolved easily in her mouth -- rice puffs, cheerios, corn puffs, that sort of thing. She steadfastly avoided all fresh fruits and vegetables (though she would suck on fruit leather and eventually would eat small chunks of cooked veggies, like sweet potatoes, carrots.) Mixed textures (chunks in a puree, for example, or dipping things in a puree) were also a no-go. Finger foods ultimately worked the best -- I just had to make sure they were very non-chokeable, since she wasn't very adept at muscle control, and that I only put a few of anything on her tray at a time, b/c she was also terrible at portion control, and would stuff everything into her mouth and promptly choke. Ah, good times. I spent the first 3 years of her life putting olive oil and coconut oil on everything and giving her countless avocados (one of the few fats she would eat.) I pumped for her until she was 18 months old, which is when I weaned her older sister (at 3 1/2 yrs.) and my milk supply subsequently plummeted.

 

In our case, the feeding issues haven't gone away completely (she still refuses fresh veggies, although she'll eat them cooked, and most fresh fruits, but again, will eat them in other forms, like applesauce or fruit leather), but they have greatly improved. There was no magic bullet, though, I'm sorry to say. It was gradual and mostly a factor of time, as her muscle tone improved and she outgrew her reflux. Now, at 5, she has a great appetite and her weight/height are normal (for her growth curve.)

 

I hope my ramblings give you some hope that there can be a light at the end of the tunnel, and most of all, comfort that you aren't alone.

 

Kind regards,

Guin

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#10 of 42 Old 06-24-2011, 11:25 AM
 
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Sorry, I didn't see your post till just now. I've been pretty busy lately, as I'm sure everyone else has been.

I could have written your post when DS was that age. He had feeding issues from Day 1. We went through EI, but the therapists they sent out had no clue. They didn't work with him at all, they just tried to give me advice & such. I kept thinking...they need to work *with him*, not tell me "how to hold the spoon!" and such. We wasted one year with them. Near the end of that, I found a good private therapist by calling around to every doctor or therapist I could think of and asking for specifically the kind of therapy I was looking for. She wasn't cheap, but she was good, and she came to our house. She was the first to identify his oral motor problems. Once she worked on that he was less hesitant, and then she did play-based feeding therapy. He really loved her, and would do stuff for her that I couldn't get him to try. She was coming once a week. Even so, it was slow and he was still hesitant. Our therapist eventually had to stop coming due to issues with her pregnancy. So we've been on our own since then. I think we probably maxed out her services by then anyway. I truly believe that he would not be eating solids without her. Plus, she understood about the BF-ing, and didn't try to convince me to slow down on that or anything. I know that it was the only reason he got any decent nutrition and maintained a decent weight.

The summary is that he had some kind of oral motor issue from birth. He chewed on me all the time while BF-ing - and I saw lactation consultants. It was his problem, not a problem I could solve with "proper BF-ing technique", as I was doing everything right. The oral motor issue made him not able to chew properly, so he was naturally fearful of eating. He knew very well that he didn't know how to eat properly, so it made him afraid. Add to that some extreme tactile defensiveness (both hands and mouth), making him disgusted at most food things in his mouth, and he had a real problem eating. These were the layers of messed-up-ness we had to deal with to address his problem. Once he was eating a few things, we discovered lots of food allergies, making things even harder. We have had our share of backsliding...but I've figured out that whenever he's sick or having some kind of allergic or sensitivity reaction he just doesn't eat very well. But if I look at the big picture, over time, he's actually very slowly gaining things to eat. But it's a lot of work on my part to make it "just right" all the time, every time. We are still working on this. It probably will never end, until he leaves home, and then he's on his own. As far as nutrition - we've probably *just* got enough to get by. And I give him a multivitamin in his yogurt (all the chewables have something he's allergic to).

Bottom line - don't wait to see if it resolves itself. If you're not pleased with your current therapist, find another and give that a try. It's very helpful (mandatory?) that the child like the therapist. This is not the place to save a few bucks. Eating is probably the most important skill a person can have. And it's probably the hardest thing I've had to deal with.

Oh - and don't get hung up on any particular order of things to eat. Your child may not follow that order, and may prefer, in fact, hard crunchy things for example, to the soft-to-hard progression that is usually done.
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#11 of 42 Old 06-24-2011, 02:27 PM - Thread Starter
 
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Thanks so much, everyone. This is both depressing and comforting at the same time, if that makes any sense. As much as I don't want to think about it, I've read elsewhere that these things can take years to sort out, so I guess we're all in the same boat.

It does help to hear from others who have BTDT. And boy, some of you have really been through the wringer! hug.gif DD does seem healthy and happy, but small; and she's on the later side of average in meeting her milestones, but I think that's just her personality. We have made some good progress: 6 months ago she'd scream if she saw a spoon, but now she can sometimes eat 4 oz of puree in a meal. It's not a sensory thing because she'll stick anything in her mouth: paper, sand, mulch, lint, cat fur, leaves, etc. Well, anything OTHER than her therapy stuff! I wonder if play therapy would be more effective? Her modified barium swallow study showed all kinds of issues, so we have our work cut out for us, but it's good to hear that you guys have stuck with it and seen some success!

I especially needed to hear that today: daycare called an hour ago. Her bottle broke, so she's hungry and has nothing else she can eat because she can't eat the cheerios and crackers they have there. I carpool and have no car, so my baby is hungry and I can't get there! bawling.gif

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#12 of 42 Old 06-24-2011, 06:46 PM
 
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Originally Posted by Mosaic View Post

Thanks so much, everyone. This is both depressing and comforting at the same time, if that makes any sense. As much as I don't want to think about it, I've read elsewhere that these things can take years to sort out, so I guess we're all in the same boat.

It does help to hear from others who have BTDT. And boy, some of you have really been through the wringer! hug.gif DD does seem healthy and happy, but small; and she's on the later side of average in meeting her milestones, but I think that's just her personality. We have made some good progress: 6 months ago she'd scream if she saw a spoon, but now she can sometimes eat 4 oz of puree in a meal. It's not a sensory thing because she'll stick anything in her mouth: paper, sand, mulch, lint, cat fur, leaves, etc. Well, anything OTHER than her therapy stuff! I wonder if play therapy would be more effective? Her modified barium swallow study showed all kinds of issues, so we have our work cut out for us, but it's good to hear that you guys have stuck with it and seen some success!

I especially needed to hear that today: daycare called an hour ago. Her bottle broke, so she's hungry and has nothing else she can eat because she can't eat the cheerios and crackers they have there. I carpool and have no car, so my baby is hungry and I can't get there! bawling.gif

Actually, it sounds like she may have sensory issues as well...sounds like sensory seeking behavior. Maybe she's craving the oral stimulation that she's not getting from eating food. I found this true with my DS. He would chew on anything that was NOT food. Seems weird, but he was craving that stimulation. The first food he would even hold in his hand, which turned out to be the first solid he ate was a pretzel stick. Scared me to death, but he enjoyed the crunching and chewing. Once he started eating more solids, I noticed that the non-food chewing behavior was markedly decreased. In the meantime, I got him some safe chewy things...like chewy tubes and chewy P's & Q's and such from therapy places. Places like this: http://www.dysphagiaplus.com/ and http://beyondplay.com/ (there are others).

One question.. you mention her bottle broke...have you or the therapist done any work trying to get her to drink from a cup? They have a few kinds of cups that might help with that (check the therapy places).

OK, another question - Have you tried any of those herbal teas (like Mother's Milk) for increasing lactation?

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#13 of 42 Old 06-25-2011, 09:21 AM
 
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I totally agree that she does seem to have sensory issues.  My son was the exact same way.  He didn't mouth things as a baby, he didn't even babble like a normal baby...but I'd say around a year old he started sensory seeking behavior (eating everything BUT food).  He also stuffs his mouth with too much food (once he submits to eating), which is also a common problem.  It seems counter intuitive to say she has sensory issues, but part of it is they can be on both ends (sensory defensive/seeking) at the same time, which just makes it all the more confusing.  Google oral defensiveness,oral sensory seeking, sensory processing disorder (concentrate on the oral symptoms) and see if it sounds like her. 

 

My son also LOVES bold flavors, like pickles, bbq sauce, olives, buffalo, anything really sweet or salt...its almost like he can't feel as much in his mouth and bland foods just don't do it for him (which would be the same reason he stuffs his mouth, so he can tell where the food is, and the same reason he used to eat non food items, just to FEEL something...but at the same time he was also orally defensive as he refused to eat normal food for the most part...but I think that came more from him having a food=pain association from his medical issues..reflux/delayed emptying). I hope I"m making sense!

 

What did the swallow study say...you said they ruled out reflux, does she aspirate? You mentioned I think thickening her bm?


Hayley, exclusively pumping (eliminating dairy and soy) 2 years now! Proud mommy to:Owyn 2/8/03 and Dominic 10/16/08 (GERD, SPD, pediatric feeding disorder, eczema) # 3 EDD 07/13/11
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#14 of 42 Old 06-25-2011, 03:39 PM
 
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I totally agree that she does seem to have sensory issues.  My son was the exact same way.  He didn't mouth things as a baby, he didn't even babble like a normal baby...but I'd say around a year old he started sensory seeking behavior (eating everything BUT food).  He also stuffs his mouth with too much food (once he submits to eating), which is also a common problem.  It seems counter intuitive to say she has sensory issues, but part of it is they can be on both ends (sensory defensive/seeking) at the same time, which just makes it all the more confusing.  Google oral defensiveness,oral sensory seeking, sensory processing disorder (concentrate on the oral symptoms) and see if it sounds like her. 

 

My son also LOVES bold flavors, like pickles, bbq sauce, olives, buffalo, anything really sweet or salt...its almost like he can't feel as much in his mouth and bland foods just don't do it for him (which would be the same reason he stuffs his mouth, so he can tell where the food is, and the same reason he used to eat non food items, just to FEEL something...but at the same time he was also orally defensive as he refused to eat normal food for the most part...but I think that came more from him having a food=pain association from his medical issues..reflux/delayed emptying). I hope I"m making sense!

OT a bit but I was wondering why DS does these things!!! He stuffs his mouth and likes SUPER spicy food (stuff that's even too hot for me sometimes, and I love spicy!!) or sour or salty or whatever... and he takes huge bites of food (he's getting better about swallowing it but often he'll still just chew it all and spit it out)... and he's very texture-sensitive. Interesting. OK just wanted to say thanks for posting that. smile.gif

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#15 of 42 Old 06-25-2011, 06:52 PM - Thread Starter
 
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You gals rock, seriously! Let me see if I can answer all of your questions:
Quote:
Originally Posted by KimPM View Post

Actually, it sounds like she may have sensory issues as well...sounds like sensory seeking behavior. Maybe she's craving the oral stimulation that she's not getting from eating food. I found this true with my DS. He would chew on anything that was NOT food. Seems weird, but he was craving that stimulation. The first food he would even hold in his hand, which turned out to be the first solid he ate was a pretzel stick. Scared me to death, but he enjoyed the crunching and chewing. Once he started eating more solids, I noticed that the non-food chewing behavior was markedly decreased. In the meantime, I got him some safe chewy things...like chewy tubes and chewy P's & Q's and such from therapy places. Places like this: http://www.dysphagiaplus.com/ and http://beyondplay.com/ (there are others).

One question.. you mention her bottle broke...have you or the therapist done any work trying to get her to drink from a cup? They have a few kinds of cups that might help with that (check the therapy places).

OK, another question - Have you tried any of those herbal teas (like Mother's Milk) for increasing lactation?

1) She has not started drinking from a cup. I asked about it on Wed., and we're going to make that a priority at next week's therapy. (Daycare takes them outside in 90+ degree weather, and all the kids get water after, except for DD. Her thickened milk won't come out of the nipple cold, and the SLP doesn't think she can safely handle regular BM, plus she needs the calories, so straight water is out.)

2) I haven't tried anything big to maintain my supply. I was sorta hoping she'd get the hang of things by now, but I think I'll start the oatmeal/tea/fenugreek regimen ASAP.
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Originally Posted by Dom&O View Post

I totally agree that she does seem to have sensory issues.  My son was the exact same way.  He didn't mouth things as a baby, he didn't even babble like a normal baby...but I'd say around a year old he started sensory seeking behavior (eating everything BUT food).  He also stuffs his mouth with too much food (once he submits to eating), which is also a common problem.  It seems counter intuitive to say she has sensory issues, but part of it is they can be on both ends (sensory defensive/seeking) at the same time, which just makes it all the more confusing.  Google oral defensiveness,oral sensory seeking, sensory processing disorder (concentrate on the oral symptoms) and see if it sounds like her. 

 

My son also LOVES bold flavors, like pickles, bbq sauce, olives, buffalo, anything really sweet or salt...its almost like he can't feel as much in his mouth and bland foods just don't do it for him (which would be the same reason he stuffs his mouth, so he can tell where the food is, and the same reason he used to eat non food items, just to FEEL something...but at the same time he was also orally defensive as he refused to eat normal food for the most part...but I think that came more from him having a food=pain association from his medical issues..reflux/delayed emptying). I hope I"m making sense!

 

What did the swallow study say...you said they ruled out reflux, does she aspirate? You mentioned I think thickening her bm?

1) I never though that her actions could be sensory-seeking, but it makes sense. She has always been a mouthy girl, but nothing goes in past the very front. Chewy sticks get ignored entirely or only touch her front teeth. Other things (paper, etc.) go in and get stuck to the very high roof of her mouth. At least she doesn't swallow this stuff!

2) we did the MBSS when she showed no progress after months of serious therapy. Food and liquids fall straight back to her first and second set of "safety pockets" without her doing anything. Her swallows don't clear her mouth, and they don't clear her "safety pockets." She tries to mash any lumps with her tongue: she never chews or moves food to the sides of her mouth. They did NOT see aspiration on the MBSS, but they couldn't eliminate it, either. They recommended another study to check that (which we haven't done yet.) They consider her at "high" risk of obstruction and aspiration. That's when we started thickening her bottles of BM.

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#16 of 42 Old 06-26-2011, 09:28 AM
 
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Crunchy momma, no problem! I'm glad it helps you put things together...in fact a LOT of children with sensory issues have these same charecteristics when it comes to eating. 

 

About the bottle, I wouldn't worry about getting her off of it just yet...My DS JUST got off of his bottle and he's two and a half! I look at these children as delayed in feeding, which when you think about it IS a developmental delay, even though it has a cause they are still behind other children in the skill of eating.  So I treated my DS as if he was delayed in this area and ingored all of the when they are supposed to be done with bottles type of talk.  All the doctors and therapists areeed, and it was more our priority to get him eating than to worry about bottles...and when you think about it moms nurse past one year, there is no reason not to look at bottles the same. 

 

Does your therapist try to get in her mouth? Like with the nuk or other therapy tools? How long has she been seeing this one? I only ask because we had to see a few people before we got someone who really helped.  You definately do not one someone who forces them, and she needs to build trust with the therpist. If the one your working with now has not made any progress I think its time to find someone else. JMHO.

 

And I'm not sure if this is breaking community guidelines, I hope not, but I also wanted to mention there is a great group on babycenter called bottle and food refusers and there are about three hundred memebers.  There is a lot of support and wonderful advice to be had.  Just google it or search food refusal in the groups section...If your unable to find it I can link it.

 

I know its so stressful, but there is really a lot that can be done and don't give up hope that one day she will eat..I promise it will happen. 


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About the bottle, I wouldn't worry about getting her off of it just yet...My DS JUST got off of his bottle and he's two and a half! I look at these children as delayed in feeding, which when you think about it IS a developmental delay, even though it has a cause they are still behind other children in the skill of eating.  So I treated my DS as if he was delayed in this area and ingored all of the when they are supposed to be done with bottles type of talk.  All the doctors and therapists areeed, and it was more our priority to get him eating than to worry about bottles...and when you think about it moms nurse past one year, there is no reason not to look at bottles the same. 


It isn't so much about "supposed to be done" with bottles etc, I think it's more about being practical because bottles can break, or the thickened milk won't come out cold. So if she could get something from a cup, even if it's slowly, it would be ultimately practical for her at this point.

And I totally agree that she has to build up trust with her therapist. You definitely don't want somebody forcing things on her. But what I found is there's a certain amount of "push" the therapist needs, and it's a fine line to walk, between just enough and too much. A good therapist will know exactly where that line is. In our therapy sessions, the SLP would first do some play with my DS and get him all friendly. Then she would do some stuff with him gently in his mouth...and she would sing to him and ask him what song he wanted to hear, song A or song B. He didn't always love that, but she did it gently and he went along with it willingly, as he was being entertained by her singing. Then she did some play food therapy stuff. She would get him involved in whatever play she was doing with food, but somewhere in the middle of the play she would always push his boundaries a bit, where he needed work. She was very gentle about it, but I could see he was uncomfortable a bit at times. He was never grabbed and forced, and he was never screaming or crying or anything, but I could tell he was uncomfortable. But this process of confronting his uncomfortable spots was just the thing to push him through his unwillingness.

Anyway, Mosaic - it sounds like your DD doesn't quite know what to do with her tongue. I'm sure your SLP is trying to work on that. Sounds a bit like my DS - he was trying to do the "suck-swallow" thing with his tongue and hadn't moved on to the next level. My DS was a bit older, about 22-23 months, and he could understand us pretty well. So he got lots of explanation on how to chew. The SLP and I both gave him demonstrations on the technique. She was also giving him the in-mouth exercises to help him understand how to chew. It took time and lots of work, but he finally got it.

Another Q - has your DD ever had any oral work done using a Z-vibe? My DS LOVED the Z-vibe - I got one for home use, and the SLP was using that with him during her visits. There is also a therapy manual with suggestions on how to use the Z-vibe. We also started using a spinbrush toothbrush to make toothbrushing even possible. He started enjoying the brushing time, rather than it being a fight just to get in there.

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About the bottle, I wouldn't worry about getting her off of it just yet...My DS JUST got off of his bottle and he's two and a half! I look at these children as delayed in feeding, which when you think about it IS a developmental delay, even though it has a cause they are still behind other children in the skill of eating.  So I treated my DS as if he was delayed in this area and ingored all of the when they are supposed to be done with bottles type of talk.  All the doctors and therapists areeed, and it was more our priority to get him eating than to worry about bottles...and when you think about it moms nurse past one year, there is no reason not to look at bottles the same. 




It isn't so much about "supposed to be done" with bottles etc, I think it's more about being practical because bottles can break, or the thickened milk won't come out cold. So if she could get something from a cup, even if it's slowly, it would be ultimately practical for her at this point.

And I totally agree that she has to build up trust with her therapist. You definitely don't want somebody forcing things on her. But what I found is there's a certain amount of "push" the therapist needs, and it's a fine line to walk, between just enough and too much. A good therapist will know exactly where that line is. In our therapy sessions, the SLP would first do some play with my DS and get him all friendly. Then she would do some stuff with him gently in his mouth...and she would sing to him and ask him what song he wanted to hear, song A or song B. He didn't always love that, but she did it gently and he went along with it willingly, as he was being entertained by her singing. Then she did some play food therapy stuff. She would get him involved in whatever play she was doing with food, but somewhere in the middle of the play she would always push his boundaries a bit, where he needed work. She was very gentle about it, but I could see he was uncomfortable a bit at times. He was never grabbed and forced, and he was never screaming or crying or anything, but I could tell he was uncomfortable. But this process of confronting his uncomfortable spots was just the thing to push him through his unwillingness.

Anyway, Mosaic - it sounds like your DD doesn't quite know what to do with her tongue. I'm sure your SLP is trying to work on that. Sounds a bit like my DS - he was trying to do the "suck-swallow" thing with his tongue and hadn't moved on to the next level. My DS was a bit older, about 22-23 months, and he could understand us pretty well. So he got lots of explanation on how to chew. The SLP and I both gave him demonstrations on the technique. She was also giving him the in-mouth exercises to help him understand how to chew. It took time and lots of work, but he finally got it.

Another Q - has your DD ever had any oral work done using a Z-vibe? My DS LOVED the Z-vibe - I got one for home use, and the SLP was using that with him during her visits. There is also a therapy manual with suggestions on how to use the Z-vibe. We also started using a spinbrush toothbrush to make toothbrushing even possible. He started enjoying the brushing time, rather than it being a fight just to get in there.


Kim, good point about the bottle...I've never had to thicken so I'm not familiar with that aspect of all of this. I will say that we transitioned from bottles to born free sippy cups as they seem to be very similar to the feel/flow of a bottle and the tip is wider so those may help.

 

And I totally agree with having an SLP that can gently push boundries. We were specifically assigned to ours due to his strong resistance (on top of the sensory, medical, and emesis issues the older he got it became behavioral as well so we needed someone who could understand each issue seperately and as a whole and manage all of the at once...talk about a challenge!).  Our first few sessions he only sat in the high chair for about ten minutes and she got him out before he vomitted (crying to hard makes him vomit).  But she slowly upped the time in the chair, and I don't even think we attempted feeding for a month or two.  But she was also firm with him when he needed it...it is a very fine line and very good therapists know exactly where that is.  Lots of playing is involved...and sometimes it doesn't even look like they are doing anything, but they are establishing trust and that is key for when they start to push because than the child knows the therapist is on their side and wouldn't do anythign to hurt them.

 

One of the biggests successes for us was using toy pieces for bites.  Or you could also do TV...for example if Dominic took a bite of food he would get a puzzle piece to go in to his wooden puzzle...we also used Mr. Potato head parts.  Or if she loves a book or movie, read a page or let her watch a few minutes, than pause until a bite is taken.  It seems very tedious, but it was a very useful tool for us.  Unfortunately, DS still needs distraction when he eats (mainly TV)...but I'm confident that one day we won't need to.  Right now we are still just doing what works, and to be honest I'll do whatever to get him to keep eating at this point...I'm sure I'm being a little lazy about it though as I'm about to have another baby but I know we are so far from where we were even a year ago and I'm just thankful that we didn't need a tube or a feeding program (we were on the waiting list for KKIs intensive feeding program, but our insurance kept denying, thankfully we didn't need it in the end).

 

We have the zvibe too and still use it occasionally...its the only way he'll eat applesauce (grainy textures he usually refuses, even still).  I dropped a few bucks on lots of therapy stuff and that was one of my best purchases.  Even wistles, or bubbles or anything she can chew on to get that input would help.  Toothbrushing is still a fight for us, although its managable. 

 

 


Hayley, exclusively pumping (eliminating dairy and soy) 2 years now! Proud mommy to:Owyn 2/8/03 and Dominic 10/16/08 (GERD, SPD, pediatric feeding disorder, eczema) # 3 EDD 07/13/11
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#19 of 42 Old 06-27-2011, 11:28 AM - Thread Starter
 
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Does your therapist try to get in her mouth? Like with the nuk or other therapy tools? How long has she been seeing this one? I only ask because we had to see a few people before we got someone who really helped.  You definately do not one someone who forces them, and she needs to build trust with the therpist. If the one your working with now has not made any progress I think its time to find someone else. JMHO

For the last 6 months, we have been focused on getting something, ANYTHING in her mouth that we can use to work with her (i.e., mulch and paper doesn't count)! Nuk brushes, finger brushes, toothbrushes, chewy tubes, fingers, straws, spoons, Tinker Toys, Barbie legs, etc. She'll let things into the front 1/2 inch of her mouth but no further and nothing along the sides. We've been with this therapist since birth, but we took off about 4 months and have had some inconsistencies there, too. Our first therapist had her baby prematurely and is out for the foreseeable future, and they hired a new lady who has only seen DD 3 times. So far that's not going so well.
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Anyway, Mosaic - it sounds like your DD doesn't quite know what to do with her tongue. I'm sure your SLP is trying to work on that. Sounds a bit like my DS - he was trying to do the "suck-swallow" thing with his tongue and hadn't moved on to the next level. My DS was a bit older, about 22-23 months, and he could understand us pretty well. So he got lots of explanation on how to chew. The SLP and I both gave him demonstrations on the technique. She was also giving him the in-mouth exercises to help him understand how to chew. It took time and lots of work, but he finally got it.

Another Q - has your DD ever had any oral work done using a Z-vibe? My DS LOVED the Z-vibe - I got one for home use, and the SLP was using that with him during her visits. There is also a therapy manual with suggestions on how to use the Z-vibe. We also started using a spinbrush toothbrush to make toothbrushing even possible. He started enjoying the brushing time, rather than it being a fight just to get in there.

That sounds like DD, too. We haven't tried a z-vibe, but we do have a little vibrating thing that we can place on the spoon/nuk brush/etc. and she doesn't like it. Maybe she'd go for that or the spinning toothbrush?

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#20 of 42 Old 06-27-2011, 12:42 PM
 
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Unfortunately, DS still needs distraction when he eats (mainly TV)...but I'm confident that one day we won't need to.  Right now we are still just doing what works, and to be honest I'll do whatever to get him to keep eating at this point...I'm sure I'm being a little lazy about it though as I'm about to have another baby but I know we are so far from where we were even a year ago and I'm just thankful that we didn't need a tube or a feeding program (we were on the waiting list for KKIs intensive feeding program, but our insurance kept denying, thankfully we didn't need it in the end).


This was just like DS - he needed distraction to take his mind off the food texture and thinking about it too much. We put the dining table in front of a window (we live on a relatively busy community street) so he could watch the cars and everyone go by. He sat facing directly out the window. We still have the table in front of the window, LOL. I also read books to him while he was eating. That was helpful too. But he doesn't need so much distraction these days. It's still good to give him something else to look at or think about, though. But that part does eventually get better. It doesn't take my full time and attention anymore.

As far as the highchair, he totally hated the regular high-back highchair. I think he felt "cornered" in there. So we got rid of that (probably the only used highchair out there that looked new like the day it came out of the box, since he never ate in it, LOL). We got one of those tripp trapp chairs so there was nothing behind his head and he could sit up to the regular table. That went over much better.



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#21 of 42 Old 07-21-2011, 05:45 AM - Thread Starter
 
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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. hopmad.gif

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. smile.gif

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#22 of 42 Old 07-21-2011, 06:36 AM
 
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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!

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#23 of 42 Old 07-21-2011, 08:45 AM
 
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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. hopmad.gif

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?
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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.
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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. smile.gif

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.

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#24 of 42 Old 08-16-2011, 10:12 AM - Thread Starter
 
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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! smile.gif

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#25 of 42 Old 08-17-2011, 09:22 PM
 
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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.


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#26 of 42 Old 08-18-2011, 05:58 AM
 
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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.

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#27 of 42 Old 12-01-2011, 07:28 AM - Thread Starter
 
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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! joy.gif

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#28 of 42 Old 01-04-2012, 11:22 AM - Thread Starter
 
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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. bawling.gif

Mi vida loca: full-time WOHM, frugalista, foodie wannabe, 10+ years of TCOYF 

 

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#29 of 42 Old 01-04-2012, 04:29 PM
 
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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!

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#30 of 42 Old 01-04-2012, 04:58 PM
 
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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!

 

 

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