Kids with oral aversions & feeding problems Support - Page 3 - Mothering Forums

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#61 of 139 Old 12-28-2006, 12:57 AM
 
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Yes he did have the fundo, it's also called a nissen wrap, but thanks for letting me know that it is a long recovery. It has been already, but sometimes you need someone who's not in the middle to let you know, especially though someone who is not a doctor.
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#62 of 139 Old 12-28-2006, 12:58 AM
 
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I wasn't sure if we belong here, but we probably do. My middle child has been off of the weight chart since he was 9 mo old. He is now 5.5 and still is off the chart.

He eats lots of different textures, so I'm not sure it's an oral aversion. In fact he eats more of a variety of things than either of my other two kids. He just doesn't eat a lot and gets distracted easily. We recently saw a feeding therapist, and she said there wasn't anything she could do to help us. He doesn't gag or have trouble swallowing. She said it's behavioral.

He wouldn't drink milk or anything like pediasure for the longest time. Today he drank a full 8oz. glass of whole milk with carnation instant breakfast. This is a major accomplishment. He has also been eating more lately. I'm hoping this continues so we can avoid the NG tube that has been suggested to us as the next step.
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#63 of 139 Old 12-28-2006, 01:30 AM
 
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Quote:
Originally Posted by zaviersmomma View Post
Yes he did have the fundo, it's also called a nissen wrap, but thanks for letting me know that it is a long recovery. It has been already, but sometimes you need someone who's not in the middle to let you know, especially though someone who is not a doctor.
Go to www.parent-2-parent.com board and find the fundo forums. Lots of parents who can help you with their own experiences.

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#64 of 139 Old 12-28-2006, 10:12 PM
 
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It's so nice to read here, and know you guys understand. I'm going through a hard time right now ... my DS has been sick and has not eaten a single solid food in days. Yesterday he bit into a tortilla chip and I nearly cried. People all around me are giving me a hard time, putting even more worry on me. I can't do anything until I find an OT and get him back into therapy, right now my hands are tied, and he's living off PediaSure at 4 years old. It makes me feel like such a crapy Mom.

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Originally Posted by PumpkinSeeds View Post
You just can't wrap your head around it unless you have a child like that, isn't it? The best validation that I got was when my son was being evaluated and the OT said that whoever told me that "he would eat when he was hungry" was wrong.



I said before that I was spoon feeding my son until a couple of months ago. I used to feed him this pureed soup I would make and hide a lot of things in it, but now he won't eat it because he won't self feed it and he doesn't want me to feed him anymore. So now I'm trying to find things that he can eat without gagging.

I know I'm rambling, but there has been many a day when I thought I was the only one going through this. And to think I used to consider myself a foodie. Now I think of food and I just. get. sad.

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#65 of 139 Old 12-28-2006, 10:29 PM
 
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I've struggled with not wanting to make food an "issue" and tricking myself into thinking he would start eating on his own. Heh, not true! I can't hide anything in the PediaSure, unless it's totally colorless and tasteless (like his Singulair we put in there at night) he knows the difference.

I am so thankful that he drinks PediaSure, because it's what is keeping him so big and healthy! My friends joke that he should be the model for male Muscle and Fitness because he's in such great shape.

But I worry because he seems to want to try food less and less. He goes days without touching a bite. I've been so reluctant to make food an issue and "ask" him to eat. Maybe I should consider that?

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Originally Posted by Thystle View Post
mistymama ... there is alot you can hide in Pediasure, and alot of mama's that wish their kids would drink it!

Have you ever "witheld" it until he eats a few bites of something else first? And then give him the drink? And then slowly upped how many bites they had to eat first?

Some kids do not respond well to this and others think of it as a game or "duty" to eat their # of bites first.

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#66 of 139 Old 12-28-2006, 10:42 PM
 
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Originally Posted by mistymama View Post
It's so nice to read here, and know you guys understand. I'm going through a hard time right now ... and he's living off PediaSure at 4 years old. It makes me feel like such a crapy Mom.
((HUGS)) I know the feeling and it's very frustrating. He's alive and growing because you are a good mom and you are doing what he needs right now. I think that's awesome that he's doing so well drinking his Pediasure.

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#67 of 139 Old 12-28-2006, 11:11 PM
 
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Quote:
Originally Posted by mistymama View Post
It's so nice to read here, and know you guys understand. I'm going through a hard time right now ... my DS has been sick and has not eaten a single solid food in days. Yesterday he bit into a tortilla chip and I nearly cried. People all around me are giving me a hard time, putting even more worry on me. I can't do anything until I find an OT and get him back into therapy, right now my hands are tied, and he's living off PediaSure at 4 years old. It makes me feel like such a crapy Mom.
I'm so with you. My DS lives off Reliv (which is like pediasure), and it makes me feel so awful too.
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#68 of 139 Old 12-29-2006, 01:36 AM
 
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Did the OT make the referral to feeding therapists, or your child's pediatrician? I am wondering about going with a feeding therapist instead of an OT. I want to focus my limited funds where they will really make a difference.
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#69 of 139 Old 12-29-2006, 01:46 AM
 
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The GI made Nitara's first referral to a feeding therapist to make sure her oral skills were okay, and that she was physically able to suck/chew/swallow. That therapist noticed that Nitara had sensory issues, so then she had an OT eval. After that we had to switch insurance and they dropped her therapy. We contacted the early intervention folks and they had a free eval in our home. She qualified and recieved free(!) OT and feeding therapy once a week for awhile.

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#70 of 139 Old 12-29-2006, 08:13 PM
 
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I am starting to think my ds fits here also. As a baby he weaned very early, and very suddenly. One day he nursed the next he refused and never nursed again. Currently he will only eat berries, cocoa puffies cereal (don't shoot me), and bacon. If I give him cookies he will lick them but not eat them. Right now he's stuck on pomagranates, but my grocery store stopped carrying them, plus they give him a horrible diaper rash, like all berries. But for some reason all he wants to eat are berries. Today he had 1/4 c of cocoa puffies for breakfast, and half a banana for lunch. Yesterday he had bacon for breakfast, and nothing else all day. He is still in the process of being evaluated for ASD and has a referral for sensory issues. He doesn't gag when eating, he just decides he doesn't like the look of his food and he won't eat it. I can tell he's losing weight, and I'm not sure what to do. He's always been picky, but the last few weeks it has reached a critical point. He's just not eating hardly anything. I have to limit his fruit because it makes his bottom bleed, but it's the only food he will eat any real amount of, besides bacon. He has another evaluation with the developmentalist at the end of next month. Should I try to make an appointment with his Ped sooner? I'm sure they'll just tell me that all kids are picky, and he'll eat if he's hungry. Sigh.
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#71 of 139 Old 12-29-2006, 08:45 PM
 
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I'm assuming most everyone here knows of this, but just in case there's someone who doesn't -

Just Take a Bite is a great book for food aversions.
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#72 of 139 Old 12-29-2006, 08:53 PM
 
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Hi everyone. We don't deal with Feeding aversions. But more like allergies to everything. Raeden can't have soy, dairy, eggs, or wheat. She is currently living off of Neocate Infant which she will be on till she's two. Any solids in her stomach leads to hours of painful wretching or screaming.

We're currently off all meds because on January 4th she is having an Endoscopy and PH Probe done. Hopefully that will shed some light on the situation or help us step forward with her
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#73 of 139 Old 12-30-2006, 02:53 AM
 
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Candace hugs to you. Please don't beat yourself up with the pediasure thing. You do what is best for him. Growing is the priority right now and you are making that possible. When I have tried to cut the high calorie drinks on my son he fell off the growth curve. Serenity now--will he drink anything at all that you could hide some calories and protein in?

Rachelle, mommy to 8 year old boys! 

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#74 of 139 Old 12-30-2006, 05:30 AM
 
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Today was a GREAT food day for my ng-tube fed 2.5 year old. here's what he ate:

2 tablespoons strawberry yogurt
1 tablespoon cream cheese (he calls it cream cheese and carrots, but he just uses the carrot as a scoop)
1.5 oreos
2 cashews
half an ounce of water

Before we got the tube, so many people told me that kids will eat when they get hungry enough. That's only true for healthy eaters. It's so nice to chat with other mamas who understand that.

It's also nice to be around other moms who want SO much to be feeding their kids vitamin-filled foods, and healthy fats, and yet end up rejoicing when their kid will eat an oreo. Sigh.
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#75 of 139 Old 12-30-2006, 06:46 AM - Thread Starter
 
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Kerry, thanks for the book recommendation. I have not heard of that book.

Melissa, my son also had multiple food allergies that made it even worse trying to find something to feed him. He's 5.5 now and he can tolerate a bit of milk if it is "processed or cooked" like yogurt or milk cooked into the oatmeal. He still can't drink plain milk straight.

Fiddlefern, I know exactly what you mean, when I discovered that my son would eat fishsticks, I was so happy that he ate something with protein in it. Also, I wish my son would eat cookies, because I have looked at cookie recipes and have rationalized the nutritional benefits of milk, butter and eggs in the cookie recipes.

Everyone else,
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#76 of 139 Old 12-30-2006, 11:38 AM
 
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My son eats high fat EVERYTHING. He wants cookies for breakfast, he gets them. Milkshakes from mcdonalds on a whim? Yep. I do everything I can to get him what he wants to eat, and when he does eat something that he normally does not, even if it is a snickers bar, I am so so happy!

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#77 of 139 Old 12-30-2006, 02:16 PM
 
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Nitara's back on 100% tube feeds due to flu, ear infection, and bad cough. Thank goodness for the little portable pump we have for her. She can only tolerate 30ml/hr and that with a little spit up. She went about 4 days getting around 300 calories. She has lost a pound. At least that's one thing I don't have to worry about-- thanks to a life with the tube she's a very healthy weight and can afford to lose a bit. AND she has kept herlself hydrated through this. Which is huge!!

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#78 of 139 Old 12-30-2006, 02:21 PM - Thread Starter
 
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Oh Nitara, I hope you feel better soon.
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#79 of 139 Old 01-01-2007, 04:31 PM
 
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I haven't heard of that book either, thanks for the post! Z ate one oz. of a bottle the other day without any gagging and little coaching. Also just discovered his like/tolerance for guacamole! So hurray a food that he won't cough out or spit!
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#80 of 139 Old 01-02-2007, 01:23 AM
 
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Hope Nitara feels better soon!

I too am thankful for the tube when L gets really sick! (We used to have to get hospitalized for dehydration, now we can keep him hydrated).

Transitions- if only I knew people IRL that understood how exciting it was when L first ate a Snickers! Sigh. So hard eat all organics while I'm pregnant with #2 but have to compromise for L.

Zaviersmom- how EXCITING that he likes guac! Talk about a healthy high-cal food! That's wonderful.

Pumpkinseeds- I keep hoping that someday L will like oatmeal raisin cookies as much as I do.
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#81 of 139 Old 01-04-2007, 02:21 PM
 
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just wanted to chime in here. i feel for all of you with these feeding issues. it is such a basic essential part of life and its hard to be the mom to such a child. i have struggled with feeling like a failure to my 15 mo ds because i haven't gotten him to eat anything except hummus. he is falling off the growth charts and now the dr is mentioning failure to thrive. DS is a big nurser. I have taken him to a feeding team evaluation and they said his problem is behavioral that he just prefers nursing. But it seems like it should be human instinct to gradually eat food and learn and he just doesn't seem to want to.

we just started with an OT through early intervention last week. its just nice to have someone that comes every week with a plan since i feel like i've been struggling with this for so long and really trying to avoid a feeding tube for the little guy which our ped has mentioned a few times.

i'm not convinced he's getting enough from nursing (although he seems happy) because he wants to nurse nearly every hour during the day, it makes me think that he's hungry and i just wish he would eat food which would stick with him longer.

mostly he plays with food and throws it.
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#82 of 139 Old 01-04-2007, 04:04 PM
 
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I haven't posted on this here in a while because I just go back and forth with so many mixed feelings. Our DS1 (5 1/2 years old) is 100% tube fed and has been all his life with the exception of brief, small bottle feeds as an infant in addition to his tube feedings in an effort to get him to eat orally at that point. We had him evaluated at a behavioral feeding clinic last fall and were told that most of his food refusal is just that - refusing versus an inability to eat/swallow, etc. He is autistic and has a severe oral aversion due to multiple medical issues along with the sensory/autism stuff. He will sometimes take up to 1-2 jars of stage 1 or 2 baby foods throughout the day and other times hit/swat/kick etc. to avoid even taking one bite. He does get seen by a private OT who has worked with tube feeders, and he sees her twice a month. The frustrating part for me is how back and forth he is - when he eats willingly it's almost like he enjoys it, but he gets so violently upset the days he doesn't want to eat I wonder why I even try at all since he never actually progresses past the 1-2 jars of baby food so far. (That is a lot farther than when he didn't eat at all, though, so I try to remember that.) I just wish that I could see that eventually eating orally might be a pleasurable experience for him. I hate the thought of him going through life being forced to eat when it is such a source of stress and anxiety for him. Right now I feed him a pureed diet through his tube, which he does very well on and we have not had to supplement formula since starting the pureed foods last fall. He has had two Nissen fundoplications in the past but still has tons of reflux symptoms, so getting all his food in with the pureed diet during the day and being able to cut out his overnight formula feedings has made a big difference for him in his sleep comfort. I have to be very careful to keep up his calories or he will lose weight very quickly, and some days it is difficult if I get off on my timing of his meals a little bit since he can only tolerate a certain amount of food at a time and they have to be spaced properly to accommodate his nap time, medications, etc., but I am much happier feeding him this food over the commercial formula and he seems much healthier in general to me. (We had so many formula switches due to him not tolerating them or not gaining weight it really got very frustrating.)

Anyway, I guess the point of my rambling is that some days I just really wonder how long, how hard, how much to keep pushing him and is it really worth it when he just does not want to eat orally. I know it is more "normal" and I don't intend to give up on him yet. His lower jaw is very underdeveloped from disuse so I'm hoping if we can get him to eat that it will help with that, which may in turn help with any possible speech development, as well as helping his adult teeth fit properly when they come in. However, since he won't even chew anything other than his thumbnails (which he will chew until they bleed) it is a long way off yet it seems. It gets so discouraging. When we get so excited to see him eat the small amounts that he does, but then later that same day or the next day he is kicking and flailing to avoid taking even one little bite, it just seems so futile. A lot of his refusals seem to go along with his health status, which when his respiratory stuff is giving him trouble it aggravates his reflux further, so we go in circles. Winter is a tough time for him with his lung disease, so again we backslide in the winter and any gains he might have made in the summer seem to be lost. It seems like we are always starting over but never really getting ahead.

Anyway, thanks for listening!

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#83 of 139 Old 01-04-2007, 04:38 PM
 
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Chiming in too...I have a 4 year old with Autism and Sensory issues..and he is on a GF/CF diet..he won't eat meat or vegetables. So his list is basically GF/CF Breads, soy cheese, GF/CF cookies, potato chips, fruit snacks, oranges, he seems to have given up apples and grapes lately (wah), and that's about it. Occasionally we can get him to eat a taquito with chicken in it and I make GF/CF pizza which he likes. He used to eat GF spaghetti with no problems, but now suddenly won't eat it with sauce, so no more sneaking in stuff. He will not take liquid medications and I have to force the softchews in his mouth so they melt there when he's sick.
Weird part for me is..he LIKES a lot of things he won't eat, and he can't tell me what the issue is so I am not sure what to do. It's frustrating on a daily basis. I'm terrified he'll eventually give up all food.

Anyway..just joining in. Was researching oral defensiveness today some to see what I can do for him. I wonder if that vibrating thing would work.
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#84 of 139 Old 01-04-2007, 05:31 PM - Thread Starter
 
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Oh Cathy, . That sounds so hard.
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#85 of 139 Old 01-04-2007, 05:33 PM
 
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Hello, I just found this topic today while looking for help for my 21 month old ds. He still is not interested in solid foods. He has always been exclusively breastfed. He has been growing and healthy and our naturopath has not been concerned so far, but he has stopped growing the past few months. He did let us feed him a few times when he was 8-10 months old, but other than that he vehemently refuses to be fed (keeping his mouth shut, pushing us away, etc.). He is very strong willed; he will refuse for hours if we keep trying. We have tried letting him feed himself, but he only plays with the food, and if he gets a piece in his mouth he pulls it out right away and gives it to me. We gave up trying to make him eat a couple months ago and were hoping that he would start eating on his own, but that hasn't worked. Dh and I are getting concerned that he needs to start eating soon because he nurses almost every hour during the day and I can hardly eat enough myself to keep up with him. My parents are very worried about it, and now they are nagging me to wean him because they think he isn't eating because he is still breastfed. They think he will eat when he gets hungry enough, but he has always been amazingly stubborn and I think he could go weeks without eating if he chose to. It's helpful to read that other people agree that not all kids eat when they get hungry enough. Anyway, I definitely do not want to wean him, he's not ready for it (he's very high needs), and breastmilk is his only source of nourishment, so I don't want to give it up. He hasn't had any health problems, it seems to be that he just doesn't want to eat. Does anyone else have a toddler that just chooses not to eat without any issues like tube feeding or GERD? It sounds like we should be looking for a therapist, is there a good way to go about this without health insurance? Thanks for any ideas!
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#86 of 139 Old 01-04-2007, 05:55 PM
 
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Cathy, our children's feeding issues sound similar in some ways. I am so sorry this is hard for you. Your son's autism makes it even harder than just the reflux alone. With Nitara we know it's about split down the middle behavior/health. Until we get her feeling better long-term she will not eat better long-term or make much progress.

I went through a huge grieving process with Nitara's eating. I first had to grieve not holding her in my arms to feed her the way most mothers are blessed to experience. I then had to deal with the vomiting and medical issues (some of which are just now coming to light). Finally I had to let go of her eating. There is so much emotion around eating for a mother. It is the most basic way to nurture a child. We miss out on the feeding in arms, the toddler snacks, fixing your child's favorite meals, birthday cakes and Christmas cookies. Food is so, so emtionally tied with being a mother. And then to have to push food, to practically force feed. There's nothing natural about it.

I won't say I am totally okay with Nitara's being back on her tube again after a month off. I had such high hopes that this was it. But I should know better by now. I have been down this road so many times. She got sick, then developed and ear infection. It will probably take her 6 weeks to get back to her normal.

What I am thankful for is that she's big and strong and well nourished. I have to settle for that. And accept the tube as part of our lives for awhile to come.


(((HUGS))) to Cathy and everyone who found a reason to be on this list.

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#87 of 139 Old 01-04-2007, 05:57 PM
 
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khrys, you can call your local school (assuming you are in the US) and ask them for the birth to three, or early intervention number. They will send someone out to your house for free to evaluate your son and determine what might be going on. If he qualifies, he will get free therapy. If he doesn't, you at least have a better idea what might be going on and what direction to take to help him. Good luck!

ETA: do not wean him either. Don't let anyone tell you to do that.

7yo: "Mom,I know which man is on a quarter and which on is on a nickel. They both have ponytails, but one man has a collar and the other man is naked. The naked man was our first president."
 
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#88 of 139 Old 01-04-2007, 06:06 PM - Thread Starter
 
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Khrys, my son has never had a feeding tube and doesn't have GERD. He just simply doesn't want to eat.

One time when he was two ish, I was at a restaurant with a friend and her baby. We were just sitting there eating lunch when my friend commented on whether I was going to feed my son or not. I told her that he doesn't eat and she didn't believe me. She put a piece of food in his mouth and he promptly spit it back out. Her son (same age as mine) was eating just fine and she had even ordered his own little sandwich.

When I told the ped that he doesn't want to eat anything but saltines, the doctor insinuated that it was my fault for buying the saltines. But without the saltines, my son could literally go days without eating.

Like USAmma said, there are strong maternal urges to feed your child. You can't help but feel some sense of failure when your child won't eat.
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#89 of 139 Old 01-04-2007, 06:08 PM
 
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Sigh.

Avraham Chaim got his first cold. I know babies get colds, but he is nearly impossible to feed already and even worse now. He got sick last week Tuesday, (fever, runny nose, inflamed throat) and stopped eating. By Thursday he was back up to 7oz of mommy milk for the day. It has been a week and he is only taking 7-8oz per day now.

How long do your orally sensitive kids take to get back on track with eating again? I am starting to be afraid he never will. 10-12oz a day was bad enough.

I am afraid to go to his weight check Sunday.
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#90 of 139 Old 01-08-2007, 11:05 PM
 
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My son is the very same way. He never had a feeding tube. He was premature, but only 34 weeks and didn't stay in the NICU. Trying to breastfeed was a nightmare.

When it came time for solids, he would not allow a spoon in his mouth. He only started eating a few finger foods once he could self feed.

He's now 4, and rarely eats. I guess I should be thankful that he loves Strawberry PediaSure, as it's made him big and healthy. But it breaks the bank and it's all he wants to eat.

Tonight he ate 4 fish sticks and I nearly cried from joy. Heh, happy about fish sticks, imagine that!! It's the only solid thing he's had in 3 days.

I wish I had words of wisdom, but know that you are not alone. I know just how it feels to watch other kids in a restaurant eating, and wonder why on earth your DC would not touch a single thing on that menu. Ever.

(( hugs ))

Candacepeace.gif, Married to dh   guitar.gif, Mom to ds (8) biggrinbounce.gif , Gavin candle.gif (9/30/10 - 12/19/10) and cautiously expecting our rainbow1284.gif 4-29-12

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