UPDATE and REQUEST for Help--14 Month Old Having Difficulty With Solids

[Guest guest]

Thank you all for responding to my previous post.

We took our son, now almost 16 months old, to the allergist last week. He

had skin testing done. It appears that he is highly allergic to dairy,

eggs, cashews, and sesame seeds and perhaps more. We are waiting for the

results of the blood tests, which included some other foods that they

weren't able to test him for (due to the limited area of his small back and

him being so upset and crying after the 30 + pricks).

A month ago, I thought things were getting better. He hadn't gained any

weight but he also hadn't lost any weight. He seemed happier and was

getting about 3-5 ounces of pureed food a day. He wasn't combative and

tolerated the feedings. He wouldn't swat at the spoon or scream, and he

would sometimes even open his mouth wide ready for the next bite of a

familiar food without being prompted. I am not sure if it is at all

related, he seemed a little traumatized after his appointments with the

pediatrician and the allergist, and since then, he hasn't had a good

(solid) feeding at all, not even sweet potato, the one food that we have

been able to get him to eat fairly well after months of trying. The last

few days, immediately after being put in the high chair, he says and signs

" done " to let us know that he doesn't want to be there. If he isn't taken

out right away, he starts to cry. He hasn't done very well with

breastfeeding the last two days either. He didn't ever empty my breasts and

needed significant prompting and encouragement to nurse. He would rather

have played uninterrupted.

The vomiting which was terrible the first 10 months hadn't been a problem

the past few months, but the past week he has started vomiting again,

sometimes for no apparent reason. Thankfully, not the amounts that he was

vomiting before, but now he is very upset and cries when it happens. He

wasn't usually bothered by it much before. More than once we were sitting

on the floor playing and then he just coughs and then chokes/vomits, over an

hour after breastfeeding. Once was immediately after breastfeeding. He

looked at me as I was carrying him out of the room, brought his hands to his

mouth with a very unhappy look on his face and started babbling like he

wanted to tell me something and then vomited on me, and over my shoulder.

Once was after getting a few very tiny crumbs of toast from his grandma's

plate in his mouth. (He kept reaching for her food as she was trying to eat

so I gave him a Gerber Graduate wagon wheel to eat. He licked it a few

times and then tapped it against grandma's plate. He then licked it again

and then gagged and vomited all over grandma. We believe that it picked up

a few very tiny crumbs. The last two weeks, he has been able to eat small

pieces that either he bites off or that have been broken up for him.) He

has choked on the breast, on water (he is still trying to learn to drink

form a cup), on the meltable wagon wheels, on his own saliva this week on a

tiny piece of tofu that I didn't realize he never swallowed until too late.

He was practicing walking from Dad to Mom (me) and his mouth was open with

excitement. I noticed the tofu sitting on his tongue but before I could get

to out, he was off and " running " to Dad. Next thing you know, he is choking

and then vomits. I felt so bad. He really wanted to try the tofu that I

was eating so I let him. He seemed to like it and wanted more, so I gave

him a few more tiny pieces. Waiting between bites to allow him enough time

to chew and swallow, but I didn't visually inspect his mouth to make sure

that he had swallowed it all before he started walking about.

He hasn't had an endoscopy or biopsy yet--the GI nurse practitioner just

wanted to medicate him for reflux for two months. We weren't able to get

our son to take the Prevacid and don't want to fight him to take it since it

may be unnecessary and possibly hurtful. (He had terrible nights --pain,

crying, moaning, night wakings--the times we got him to take it).

Getting him evaluated for eligibility for the early intervention program

here in San Diego, CA has taken almost 3 months (it feels like forever).

We have another appointment tomorrow with the area coordinator, but so far

we aren't confident that we will get adequate help. She has canceled

appointments last minute, doesn't seem to be as resourceful as we had hoped,

and doesn't appear to think we need intervention/help as much or as promptly

as we do. We definitely need someone skilled in feeding issues to guide us

through this. Any recommendations how to find a professional in our area

(San Diego, CA)?

We recently took our son to the nutrition clinic at Children's Hospital

since pediatrics is not my specialty. It was extremely disappointing. The

woman that we saw had no experience with children with sensory based feeding

problems and gave us no helpful information. She started our appointment 25

minutes late (it was her second appointment for the morning! how do you get

that far behind schedule so early?), didn't review our son's medical records

before we met--everything that she asked was in his records, wasn't prepared

or organized at all, and was more interested in calculating the calories

that he gets from breastmilk and plotting him on the growth charts (both

which she had problems with and needed my help! and we were paying for the

visit!!!).

Our pediatrician is terrible. I was shocked when he told me during our

son's 15 month check up that I needed to start feeding our son solids that

he needed more than breastmilk. " Were you not listening to my husband and I

at all during our last visit? " I wanted to ask. I told him that we needed

help and asked for recommendations during our son's 12 month check up, but

he didn't take our concerns very seriously and said that he " looked good " .

He said that it was too early to tell if he had a sensory processing

disorder and that he was almost certain that he didn't. We definitely plan

to change pediatricians--seeing him treat our son the way he did and asking

us to pin him down on the table so that he could examine him made me sick

(our son doesn't like being on his back, especially if held down). He could

very easily have been more patient and taken a gentle approach, perhaps

completing part of the exam with our son on my lap and our son would have

warmed up to him. (His 15 month check up 3 weeks ago was only his second

visit to this pediatrician).

I just got the first 2 (2008) issues of Nutrition Focus. There is some

great information about children with feeding issues. Do any of you have

any more information to share or advice to offer? I heard that Kay Toomey

has a SOS training that is good, but I don't know the details. We need help

NOW. I can't wait to go to a workshop. I am (still) breastfeeding our son

9-10 times a day, so even if there was a training in our area sometime soon,

it would be too difficult since he doesn't take a bottle or sippy cup.

Other than not eating well (and not sleeping well since he isn't getting

enough calories during the day), our son is doing great. Although sometimes

it is easy to forget, I know that we are so lucky. He is so smart. At

almost 16 months, he knows the entire alphabet and communicates with us

using simple words and American sign language. We could really use some

help. ANY information/advice is greatly appreciated.

Jacquelyn

(Please see below for original post)

-------------------------

Jacquelyn , MPH, BSN, RN, RD, ACSM-HFI

To those family members, friends, and strangers who have suggested that I

stop breastfeeding and let him get " hungry enough " to eat solids, I have

shared the following:

Many people believe that if a child is hungry enough, they will eat; they

will not starve themselves. Though this theory may be true for most

children, it does not apply to children with feeding problems who are, in

fact, capable of inadvertently starving themselves. For these children, food

smells, textures and feeding literally hurts, and no amount of hunger will

overcome that fact. Through their efforts to protect themselves from pain,

eventually the appetite becomes suppressed and in time, they no longer

respond correctly to appetite as a cue to eat.

> ------------------------------

>

> ** *On Behalf Of *Jacquelyn

> *Sent:* Thursday, May 08, 2008 4:16 AM

> *Subject:* [PEDI-RD] 14 Month Old Having Difficulty With Solids

>

>

>

> I am hoping that those of you who specialize in pediatrics with feeding

> issues can offer some help. Any advice is greatly appreciated. This is a

> very long email because I wanted to make sure that you had as much

> information as possible.

>

> Thankfully, he our son isn't vomiting or spitting up much any more--it took

> over 10 months to see any improvement. He was vomiting 1-2 times a day and

> spit up constantly--we couldn't leave the house very much because it was so

> bad. Our main problem now, I believe, is food aversion/oral sensory

> processing. We tried introducing pureed solids at 8 months of age. We have

> see very little progress in his acceptance of solids. He can swallow

> fine--it isn't a motor problem. He doesn't gag/vomit every time we try to

> feed him anymore, but he doesn't seem to enjoy solid feedings like he should

> be at 14 months of age. He often gets defensive, swats at the spoon or

> grabs the spoon and won't let go, turns his head away, keeps his lips

> sealed, puts his fists in front of his face to block access to his mouth,

> protests/screams/vocalizes his dislike...We *always *try to end the

> feeding attempt before it escalates to crying. There have been a few

> occasions (unfortunately, only a few) when he ate over 3 ounces of pureed

> sweet potato and 1-2 ounces of another food. Each time we thought that we

> finally were taking a turn and would continue to see more progress, but we

> were wrong. It is only a few spoonfuls of solids a day, the rest of his

> intake is breastmilk. He hasn't gained any weight in over 6 months.

> -----------------------------------------------------------

>

>

> We are waiting to have our son evaluated by the Feeding Team at Children's

> Hospital, but there is over a two month wait. If they think that he will

> benefit from their program, there is another two month wait for him to

> start. That is a long time to wait. Our experience with Children's hasn't

> been very positive thus far. The staff has not been very helpful and it is

> a long drive for us especially with a baby who would rather be crawling

> around and playing.

>

> We have already seen two Occupational Therapist, the first was a terrible

> experience. The facility was filthy, and it was a complete waste of time.

> We got absolutely nothing out of it. The woman had no suggestions except to

> contact our insurance to see if they would cover more visits. When I called

> her to ask for the results to the infant/toddler sensory questionnaire that

> we filled out two weeks prior she said that she hadn't scored it yet and

> that it would be another two weeks. The second OT, we are still waiting to

> hear back from--it has been a month since our son's evaluation, so I called

> and left another message over a week ago, but still no word.

>

> We know for sure that our son's feeding problem is at least in part

> sensory-based. He had terrible reflux the first 10 -12 months of his life

> and may still have reflux but certainly not as bad as before. I have done

> some research on the internet and read parts of a few books like Ellyn

> Satter's book Child of Mine, Feeding with Love and Good Sense but didn't

> find enough information to help us. I wish that I had more time to do

> research, but I literally spend most of my day nursing him or trying to feed

> him solids.

>

> We never expected to have such a difficult time feeding solids to our

> baby. He has been doing great with the breastfeeding (except for the fact

> that he will only nurse lying down in bed which makes it extremely

> inconvenient to go anywhere). He is now 14 months old and 99% of his intake

> is breast milk. He isn't on any vitamin/mineral supplements. There is no

> way we could get him to take the Polyvisol with iron that his pediatrician

> recommended when he turned 6 months. Every time we try to give him infant

> Tylenol or Advil he vomits. I was concerned about his iron status, but

> fortunately his hemoglobin when he was 11 1/2 months old was normal (12.1).

>

>

> I am nursing him 6-7 times during the day and still nursing him at least

> 3-4 times a night since he isn't able to consume enough calories during the

> day. Fortunately, my milk supply is still good, but I started menstruating

> again two and a half months ago so my supply has gone down some. I

> currently have mastitis for the third time so my milk supply is even lower

> than usual. He used to only take one breast each feeding, but the last

> couple months I offer both breasts. Sometimes, he takes both, sometimes he

> only takes one--depends on how full my breasts are, when he last nursed and

> how much he took in, whether there are distractions....

>

> The first year of his life was so much tougher than we could have imagined

> possible. He was constantly spitting up and had severe vomiting (at least

> 1-2 times/day to the point of dry heaving, forceful, often such large

> amounts it was shocking). Even though he seemed happy much of the time, he

> was quite irritable at times. Dad and I did a tremendous amount to keep him

> as happy as we could--we would rock him, hold him, walk him, wear him, sing

> to him, swaddle him, bathe him, bounce him, etc. I told his pediatrician

> about all the vomiting, but he didn't seem all that concerned since our son

> was generally " happy " and we could console him. I informed his pediatrician

> that he had several signs of GERD (hiccups, cough, etc) and was wondering if

> he should be treated for reflux. The pediatrician prescribed Zantac. Our

> son was on it for 2 months (his second and third months of life) with no

> significant improvement. It was terrible giving it to him--it tasted awful

> and he didn't like it at all.

>

> Finally after 10 months, the spitting up and vomiting decreased. We tried

> introducing solids at 8 months, but our son would gag and vomit with

> everything we gave him. It was terrible. We tried different foods,

> different textures, different temperatures, different techniques (making it

> a fun game, playing with puppets, placing toys on his tray, letting him feed

> us, using distraction, giving him a spoon to hold.... I would wait at least

> 2-3 hours after breastfeeding him before offering solids so that he was

> hungry (and just in case he vomited, which he always did, I would have less

> to clean up). We were unsure if it was an overactive gag reflex (he didn't

> mouth toys or his hands much until just couple months) or if it was a taste

> thing and he didn't like what we were offering. On his birthday, I gave him

> pureed carrots for the first time and he couldn't stop vomiting. After he

> had completely emptied his stomach, he started dry heaving. I felt awful.

>

> We were so concerned that he wouldn't gain an adequate amount of weight

> because of all the vomiting that we bought a baby scale. Surprisingly, he

> was gaining much more than we expected and was in the 95th percentile up

> until he was about 7 months old. Well, now our son is in the 30th

> percentile. His length has gone from 90th to 10-15th. He hasn't gained any

> weight (or length) in over 6 months. His new pediatrician (we just had our

> first visit at 12 months) told us that our son looks great and not to worry

> about him and reminded my husband and I that we are short, medium build.

>

> Our son is now 14 months old, and it has been 6 months since we tried

> introducing solids. We have made some progress, but not much and it is

> extremely slow. It feels like I spend almost my entire day (and night)

> feeding him, or trying to, and I am getting tired and more concerned as the

> days go by.

>

> We recently discovered that if he " warms up " his mouth with his own spoon

> first (sometimes with a little food on the tip, sometimes without anything),

> he is more likely to let us put a small spoonful of food in his mouth. He

> won't open wide for us to feed him, but occasionally, he will dip his own

> spoon into the food, open his mouth wide, and put it in his own mouth. I

> know that this is progress, but he really doesn't end up getting any

> significant amount. Unfortunately, the food falls off his spoon onto the

> floor or the tray or his lap (or sprays across the cabinets or the

> refrigerator) and never makes it to his stomach. On a very good day, he

> will eat 2 ounces of sweet potato, but it is a lot of work to get him to do

> it. Sweet potato is one of the only foods that we have seemed to make any

> progress with--perhaps it is because the taste is familiar (I was eating

> sweet potato almost daily for months so maybe my breast milk tasted like

> it).

>

> Several weeks ago, he finished and entire 4 ounce jar of sweet potato and

> then had a few bites of applesauce--that was a great day. My husband and I

> were hopeful that our son finally got it. He did that one other time but

> since then hasn't done it again. On occasion, he will take a bite or two of

> pureed lentils, avocado, peaches or pears, but never more than a few

> bites--he rarely opens his mouth wide. If he does, he usually shuts it

> quickly as we bring the spoon close to his lips and sometimes turns his head

> away, like he changed his mind at the last second.

>

> Sometimes when Dad and I will sit on the floor in the family room and eat a

> snack, he will crawl up to us interested in what we are eating, but often it

> is just the plate, fork, bag, box, etc, not the food itself that he wants.

> Sometimes, it *is *the food we are eating that he wants, unfortunately,

> many of those times it happens to be something that we can't give him or

> don't want to give him yet--nuts/seeds, mixed foods. If we offer our food

> to him, occasionally, he will open his mouth for a bite or will take a lick,

> but then he seems disinterested and goes back to playing.

>

> When we offer solids, he sometimes gets very defensive or upset, sometimes

> has his hand in front of his mouth ready to grab the spoon, sometimes

> screams or is visibly upset and wants out of the high chair. He is getting

> better tolerating our efforts to feed him but still won't always eat. He

> often enjoys playing with the food, bowl, and spoon and likes making quite a

> mess smearing the food all over the tray, but he doesn't eat it. Since he

> has a somewhat strong personality, we decided to try a few finger foods

> (peas, finely shredded cooked carrots or apple, diced ripe banana) so that

> he could feed himself, but when he tried them, he ended up gagging and

> vomiting. We offered him food in the Munchkin mesh feeders, but he wasn't

> interested. We will continue to try it. He has 7 teeth, but he can't chew

> foods yet, so we decided to just stay with the pureed foods for now since we

> don't want him to choke and dislike solid feedings even more.

>

> Three weeks ago, we went to a nurse practitioner who specializes in

> pediatric GI. She is part of the Children's Hospital Feeding Team. She

> recommended that we start him on Prevacid thinking that perhaps his reflux

> is causing irritation in the esophagus and pain when swallowing. We have

> tried both forms of the Prevacid, giving him the Solutab, dissolving it in

> water and giving it in a syringe as recommended, but he gags and spits it

> up. Opening the capsules and mixing it with food might work, that is IF we

> could get him to eat whatever we mixed it in. The times we tried adding it

> to sweet potato, the one food we can get him to take, he won't eat it. He

> notices the granules of medication and didn't seem to care for them The

> next few times we offered him sweet potato (without the medication), he

> refused even a bite so we stopped trying to give it to him for a while. We

> don't know for sure that the Prevacid will help and don't want to torture

> him every day just to get him to take it.

>

> My husband doesn't have any food allergies that he knows of but complains

> about pecans, walnuts, melons, sometimes avocado and occasionally banana

> (and perhaps a few other foods) causing his throat to itch. He has seasonal

> allergies. I was tested for allergies two months ago and had no food

> allergies, just dust mites, cat, molds/grasses. It was a blood test for

> food allergies and a prick test on my forearm for the other environmental

> allergies.

>

> Even though the lactation consultants who I met with (and his pediatrician)

> stated that changing my diet wouldn't likely change how he tolerated my

> milk, that many babies are fussy for the first few months no matter what Mom

> eats, I made a few dietary changes the first few months of his life to see

> if I noticed a difference in his behavior and the vomiting/spitting up. I

> am a vegetarian, so I do not eat meat, fish or poultry. I am gluten

> intolerant (and lactose intolerant, and I have IBS-C) so I don't eat any

> gluten (wheat, rye, barley, etc). I eliminated eggs, nuts, corn, onions,

> garlic, broccoli, cauliflower, cabbage, beans, citrus. I didn't notice any

> improvement in his vomiting/spitting up. I did happen to notice a drastic

> *increase *in vomit/spitting up one week when we were traveling and I

> consumed an entire jar of peanut butter myself in less than a week (he was

> about 3 1/2 months old then--now he is 14 months). So now I don't eat any

> peanuts or peanut butter but started eating the other foods that I

> eliminated. Dairy was such a big part of my diet, so I tried

> eliminating/limiting other foods (as well as gluten and meat) first--I

> rarely consume cow's milk (as in cream soup), but I was eating at least 24

> oz of yogurt a day and would eat cheese and use protein powder several times

> a week and ice cream once a week or less until about just a month and a half

> ago. I am currently dairy free (and sometimes miss it, I especially did the

> few days after eliminating dairy). Interestingly, my husband and I have

> noticed that our son seems happier. It might just be a coincidence.

>

> We thought that he might have an allergy to dairy. After having yogurt two

> months ago, he ended up with a rash. The first time it was on his torso and

> lasted a day or so. We were told by his pediatrician that it was probably a

> delayed reaction to the MMR and chicken pox vaccines that he got 11 days

> prior. The second and third time that he had yogurt we didn't see

> anything. He did have some gas. The last two times that he had yogurt, he

> ended up with a rash/hives on his neck and chin. It cleared up quickly,

> less than few hours. We haven't given him any dairy since. He had a

> similar reaction within minutes of having a bite of oatmeal and a few bites

> of avocado the other day. There were hives on his upper lip and chin and he

> couldn't stop scratching his neck. He had never eaten oatmeal before but

> had eaten avocado several times without a problem.

>

> At his GI appointment, I asked about testing for food

> allergies/intolerances, but she said that it was too early to test, at 14

> months he was too young. I was formula fed as a baby. My mother remembers

> changing me from cow's milk formula to, I assume, soy and me tolerating it

> better. She said that she was the one who thought that I was allergic, not

> my pediatrician. I couldn't get more details than that from her--that was

> quite some time ago.

>

> In regard to solid feedings, Dad and I have tried keeping a positive

> attitude and praising our son for taking bites (or putting his own spoon in

> his mouth and " feeding " himself), we have tried making it fun/ like a game,

> tried placing toys on the tray/ using distraction, tried letting him sit on

> our lap instead of in high chair, tried sharing " our " food and letting him

> eat from " our " plate, tried different

> foods/brands/textures/temperatures/preparation methods, tried modeling

> desired behaviors, tried letting him feed us and us feeding each other,

> tried ignoring him and letting him play with the food, tried using

> puppets...

>

> Any advice?

>

> Thank you for any help that you can offer,

>

> Jacquelyn , MPH, BSN, RN, RD,

ACSM-HFI------------------------------------------------------------------------\

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