# What other options are there?



## aslmere (Feb 16, 2003)

DS is 12 months old and until now almost exclusively breastfed. He won't have anything to do with solid food.
He started losing weight and has us all terribly worried. He now weighs 13 lbs 10 oz.

I haven't givin him cow's milk because I had to do an elimination diet with him for the first 6 months and I ate no dairy protien at all. Now I can eat cheese and yogurt, but not drink milk. He can (but usually refuses) eat yogurt.. no spots or colic.

Dr is seriously concerned and told me that he is at risk for ireparable brain damage.
The Dr gave me some benecalorie product to add to anything he might eat.
I have given him some goat's milk before, he wouldn't drink much, but there was no reaction.
Two days ago he drank about 9 oz of goat's milk. Yesterday he was pretty fussy.
Then yesterday he drank another 7 oz of it mixed with the benecalorie. benecalorie info
He screamed and arched his back for much of last night. He ended up sleeping on the floor because he didn't want to be touched. This morning he had a really unusually nasty smelling poopy (TMI?)
I thought that goat's milk was good for those with cow milk sensitivity!
Could it be the benecalorie?

What else do I do? I need something full fat so no rice or soy milk.
It was a struggle getting him to accept the goat's milk!
I was so happy that I could get those extra calories in him. But he was obviously hurting last night.

What else can I put it in that I could get him to drink?

Thanks!


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## xenabyte (Jul 16, 2004)

Aslmere,

From the painful reaction he had, I would be worried about his digestive system in general and the benecalorie makes me suspicious of it.

I would get him in for testing for allergies and any other digestive issues asap. He could have problems digesting the carbohydrates, the proteins or this could be a serious condition.

I am not a doctor, and am reluctant to make guesses, since it is your son's health at stake. 13 pounds for a 1 year old does sound on the small side, is he short for his age?

If he won't eat solids yet, it might be because he has these pains and ergo, is refusing to eat them.

While many babies are perfectly happy to breastfeed exclusively for 1 year, his weight issues and the painful reaction he had might suggest he needs /some/ kind of other supplimentation and or a good, solid diagnosis for what might be causing the pain.

_Terrible smelling eliminations can be a sign of many different things. Lack of proper digestion of the foods/liquids (ergo, it just kinda rots and passes through), there are some serious diseases that can have this as a symptom._

I don't want to freak you out or worry you unneccessarily, but I truely think this is one of those times you need to 'dig a little deeper' with a /good/ doctor as to why he's having pain after consuming the milk and or benecalorie.

If this doctor isn't willing to look further, then you should find another doctor. Keep breastfeeding as much as you can; I'm assuming he doesn't have the same reactions (stomache pain, etc) when he breastfeeds? I just noticed you are expecting again, congratulations, but also, note that you could have a reduction in your milk supply as an effect of the pregnancy, so he might be getting less than he needs. You definitely need to suppliment him and yourself during this time.

You might need to eat alot more nutrition packed foods to assist your milk and baby making supply and to ensure the quality of your breastmilk (ie, some EFA oils, vitamins, etc).
Try a local LLL group to get more info on tandem nursing if this is your first pregnant and nursing experience.

*OMG!! I also just looked at the benecalorie info, it has Splenda (sucralose) in it. That is an artificial sweetener. Only slightly better than aspartame. I would stop giving that to him ASAP*!

_There are better ways to give your baby healthy fats and proteins, than using a 'diet' product? OMG, I'd ream my doctor for giving me that, especially if your son is that small, weight-wise!_

I'm not a doctor. Maybe one of the other readers is a pediatric doctor and can give you better suggestions. But to suggest a product with artificial sweetener in it!!!

Again, I think this could be a serious situation and for his sake, seek out a good pediatric or nutrition based doctor. You might need some further testing done on his digestive system.

This elimination diet you did, I assume it was because he was throwing up or having some other reactions? There are a few conditions that can lead to severe weight loss, that start out as throwing up alot (pyloric stenosis is one). But usually this is diagnosed earlier.

_Even regular baby formula for a suppiment is better than the benecalorie_, and check the 'Ensure' stuff, if he tries to give it to you!

:HUG I feel for you! My DS1 was always on the small side, weight wise, but very very tall. We were constantly trying to get him to eat more. He loved to BF and I let him do it as much as he wanted. Now he's eating well, and he's put on a bit more weight, but is still very tall.

The Nourshing Traditions book would suggest soft cooked egg yolks from free range eggs (for DHA and such) and adding things like Virgin Coconut Oil for the medium chain fatty acids (similar to human breastmilk). They even have a recipe for 'suping up' a normal brand of infant formula. However, I hate to suggest anything else, until you have made sure he's not allergic to something he's been receiving via milk or some solids.

Please keep us informed. I still can't get over your doctor suggesting that stuff...:HUG


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## xenabyte (Jul 16, 2004)

I just thought of something else, do you vaccinate him?

There have been some links to digestive problems and vaccinations, and potential for increased risks of Autism, due to the heavy metals and toxins (I.e. Mercury) not being able to be eliminated from the body as efficiently.

If he does have some digestive issues, you might want to research the vaccine issue if you do vaccinate.


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## wombat (Nov 3, 2002)

Gee that sounds like a nerve wracking problem. My dd is also on the small side (4th percentile) but healthy. I agree with Xenabyte - this sounds like it could be a serious problem. I'd be looking for medical advice.

I think it may be difficult to find a substitute for such a high calorie supplement as this benecalorie. I looked at your link. It has 330 calories in 1 1/2 oz. Milk/formula etc has about 28-30 calories in 1 1/2 oz. This is a huge difference - I guess it's purpose is to get the calories in in as small a volume as possible. It also has a very high fat content which can cause some smelly poop and digestive upset. This is no ordinary supplement though - sounds like it's only used in very serious cases and as much as I dislike artifical supplements, it may actually be necessary. Other than oils (which is what benecalorie mostly is), I can think of no other high calorie, low volume supplements that are liquid.

Have you spoken to the doctor about your sons apparent digestive upset from the benecalorie? It may simply be a side effect of much needed calories that will go away in little while?? Or it may signify something else.

I also wonder why it has sucrolose/Splenda in it. I wouldn't normally give that to my dd but if it was a choice between malnutrition/starvation and a little bit of artificial crap, I'd give it to her.

Has your sons weight loss coincided with your pregnancy? Because then the weight loss is most probably due to your lowered milk supply cause you're pregnant. However if it isn't, I'd be demanding a more thorough medical investigation into why his weight has dropped. Not eating solids at 12 mo isn't a big deal on its own but combined with weight loss and such a low weight, I'd also be investigating things like swallowing disorders.


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## xenabyte (Jul 16, 2004)

Once you get an allergy/digestive/physiological disorder 'all clear' from the doc, here are some calorie dense foods that maybe he'd try, it's worth a shot. I'm sure the other moms have stuff they can add to this list as well:

Avacado's (mush mush mush, add some water or breastmilk to make it easier to swallow if he's reluctant. Plus the taste of your milk might make him want it more.

Bananas (mushy or in tiny pieces)

Coconut milk/cream straight up or mixed in

Soaked grains, porrage style with yogurt, coconut cream and/or applesauce to flavor.

Baked, mashed sweet potatoes with butter, maple syrup or sugar of choice (I like Rapadura) and a tiny bit of cinnamon if he likes a 'spicer' flavor. DS1 loved this.

I used to mix 1/2 cup baby rice cereal, 1 little container of applesauce, 1 container of vanilla whole milk yogurt and mix it up. I would pretend to eat it and feed it to him. This is what finally got my DS1 to start wanting to eat more solids when he was about your son's age.

'Milkshakes' with lots of cream, coconut cream, ice cream if you have to, some protein powder and a sweetener, some oil added for the fats.

I'll bet Cathe has some more 'hearty' ideas to help him with upping his calorie/nutritional content in small, easy to eat doses.


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## weebitty2 (Jun 16, 2004)

If your DS is allergic to milk, or you suspect a milk allergy, WHY is a doc suggesting benecalorie?!?!?! It has casein in it, which is a HUGE trigger for people with milk allergies.


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## aslmere (Feb 16, 2003)

Thanks for the replies..
I am home for the moment.

DS is in the hospital with a feeding tube.
We are getting to the bottom of this.
He had lost another 5 oz in two days.
First is the tube to make sure he can gain weight.
Then to find out why he isn't and why he refuses to eat.

The nutritionist also reamed the DR for giving us the benecalorie.

I need to shower and then get back. DH is with him right now so I can have a short break.


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## aslmere (Feb 16, 2003)

Quote:


Originally Posted by *wombat*
Has your sons weight loss coincided with your pregnancy? Because then the weight loss is most probably due to your lowered milk supply cause you're pregnant. However if it isn't, I'd be demanding a more thorough medical investigation into why his weight has dropped. Not eating solids at 12 mo isn't a big deal on its own but combined with weight loss and such a low weight, I'd also be investigating things like swallowing disorders.

Not related to pregnancy.. it has been going on longer. But he has acted satisfied with breastmilk only up until about a week and a half ago. That is when I found out he was losing weight. Then I got concerned.
He is having a swallow study done today and then tomorrow an upper GI.

THanks so much for your reply!


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## xenabyte (Jul 16, 2004)

I got tears in my eyes for you and my heart is hurting for you!








: for you all...

Please keep us informed.


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## wombat (Nov 3, 2002)

Oh the poor little guy. I'm sorry to hear you're going through this. But it's good to hear you got a nutritionist involved and the Drs are investigating the problem. I hope they find the cause of his problem quickly.


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## aslmere (Feb 16, 2003)

Quote:


Originally Posted by *wombat*
Oh the poor little guy. I'm sorry to hear you're going through this. But it's good to hear you got a nutritionist involved and the Drs are investigating the problem. I hope they find the cause of his problem quickly.

I am frustrated! The "feeding" therapists are suggesting that the reasons he is losing weight is environmental.
They have said that he won't eat solids because he nurses at night.
They have also said that he won't eat solids because he doesn't have strict schedule.
And of course, if he was eating solids he would be a lot bigger (which is untrue... my DD ate very well and was still 15 lbs at a year)
Why are they automatically blaming me!
I am not about to refuse him when he is hungry, night or day.

He has gained 6 oz with the feeding tube, so we know he can gain weight.
No one has suggested that me breatfeeding him is the culprit, but I am waiting for that. He is getting formula and enteric pediasure through his tube, so I am just waiting for someone to tell me that if he was on formula he would have been bigger. Maybe so, but he has been a really healthy guy. And he is developmentally appropriate... so nursing can't have hurt him that much!

ARRRGGH!

So you have any suggestions for me to tell the "feeding" therpaists" ? I am about to say "stick it" But know that will lead to a call to CPS.

Thanks for letting me vent.

I am sooo tired and worried!


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## ChristaN (Feb 14, 2003)

Quote:


Originally Posted by *aslmere*
They have said that he won't eat solids because he nurses at night.
They have also said that he won't eat solids because he doesn't have strict schedule.
And of course, if he was eating solids he would be a lot bigger

Oh, that would tick me off! My older dd nursed non-stop day & night & she wasn't too small b/c of it - she weighed 24 lbs at 12 months. It would seem to me that a baby who is getting extra calories at night should be heavier as a result, not lighter!

If your older dd was only 15 lbs at one, it sounds like small babies may be the norm for your family. My sister in law's twins had a lot of digestive issues, as well. They told her that her little boy wasn't going to survive at one point. They only finally got an answer after going to a pediatric digestive specialist. I'll check with her & see if there is some better name for the kind of dr he was than just a "digestive specialist." Her son turned out to be severely allergic to milk protein.

He is doing great now at one. He has been on super-expensive formula for most of his life, but I would imagine that you could get the same results by still bf & cutting any foods to which he shows an allergy out of your diet. I would definately insist on RAST tests for food allergies.

The only other thing that I wonder about is whether they have looked at celiac disease as a possibility? A friend of mine has a son with celiac. He lost a bunch of weight before they figured out what the problem was. They did need to run blood tests & then do a small bowel biopsy to diagnose the problem, but he is great now with the total elimination of gluten from his diet. I understand that milk intolerance is not uncommon in children with celiac disease. It just occurred to me as a possibility b/c you said that he had problems with milk.

Good luck. Let us know how he is doing.


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## captain optimism (Jan 2, 2003)

If you look up failure to thrive using Google, you will see that healthcare practitioners always look for nonorganic reasons, that is, reasons they can attribute to something that parents are doing or failing to do. See for example this recent article I found on the web. I think they do this because it's much harder to treat organic failure to thrive. If they figure out that you are doing something wrong, all they have to do is tell you how to fix it. But if there is something organically wrong, like a digestive disorder, that's harder to treat.

In some ways, it would be easier for you if all you had to do was switch your nursing times to after solids meals, or something like that. I hope it turns out to be something relatively simple to solve, even though it sounds so complicated so far.


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## xenabyte (Jul 16, 2004)

Not sure what to say. Don't want CPS coming down on you, but even suggesting that breastfeeding too much is the cause is sooo wrong. It might be the only thing he can tolerate well at this time, and is what has been keeping him healthy.

My first was super slim, but very tall. He would gain a few ounces, then he'd 'lose them' to a height growth and then his percentiles would be wanky *usually about when I took him in for a check up*. He has always been on schedule or ahead for 'milestones'. So I didn't worry. He loved to nurse around the clock too! I let him, since I was always worried about him gaining.

He's now 2 years, 8 months old and just barely weighs 29/30 pounds. But he's like 38 inches tall. They even went so far as to suggest he might have Crohn's, Celiac, or Cystic Fybrosis...though they were quite wrong, he just is a slim, tall boy.

He's never been sick and with an occasional slight fever when he's been around other sick kids, he kicks it in a few hours, and is fine.

My DS#2, was a small baby (very short, but average size for weight.) He nurses alot and is already 20 pounds, at 6 months of age, and last few months, has also shot up in height percentile (from 8% to 75-80%)...so go figure. He's wearing my first son's 1 year old clothing now...

The only thing different now, is I am taking Virgin Coconut Oil and was drinking a 'Living Fuel' Smoothie every morning to help my milk supply, since the first son still likes to 'bf' upon occasion.

Here is some info re: *Crohn's*

http://www.lpch.org/DiseaseHealthInf...st/crohns.html

No special diet has been proven effective for preventing or treating Crohn's disease. Some symptoms are made worse by milk, alcohol, hot spices, or fiber, but this may not be true for everyone.

_Children lose weight because of inadequate calorie intake, which can be due to several factors:_

They may avoid eating to prevent pain associated with digestion.

They may absorb nutrients poorly through the inflamed digestive tract.

They have greater nutritional needs than average because of their disease.

If favorite foods are eliminated from the diet, children may not feel enthusiastic about eating.

Nutritional supplements or special high-calorie liquid formulas may sometimes be suggested, especially for children with delayed growth.

*Cystic Fybrosis:* http://www.lpch.org/DiseaseHealthInf.../cfsympts.html

*Celiac:* http://www.celiac.org/cd-symptoms.html

You son sounds like a healty boy, other than having a problem with milk proteins and perhaps some other unknown. Perhaps it is just allergy related and it's causing him not to want to eat/drink anything but his mommy's milk! I agree, get some allergy testing done, if you can. Ask them to rule out the 'big 3' before they start making assumptions about how often he's bfing...he's probably doing it so often because it's the only thing he can tollerate with no pain.


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## carminex (May 24, 2002)

we finally figured out that my son has eosinaphilic gasterenteritis. often times this is not diagnosed. we went through many drs. i mention it because he had food allergies, stomach pain and arching back as you described, bad poops etc. Babes with this often times have failure to thrive or weight loss.
Maybe look into it? apfed.org or a yahoo group
We finally had to switch my son to a special formula even after my elimination diet attempts for 5 months. He is gaining and happier now then we ever thought he could be. He still can not tolerate any food.
good luck to you- keep us posted


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## carminex (May 24, 2002)

http://health.groups.yahoo.com/group/eosinophilgastro/

here is the yahoo group addy
the people in this group are amazing and know so much about food allergies and eosinaphilic disorders


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## spero (Apr 22, 2003)

Oh, mama...I pray you get answers soon. How frustrating and frightening this must be for you, and esp for your son.

Is there an LC at the hospital who can advocate for you?


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## carminex (May 24, 2002)

what did they put in the feeding tube at the hospital?
many children with eosinaphilic gasterenteritis are on feeding tubes to get enough nourishment from special formula like neocate or elecare.

also wanted to add that celiacs and chrohn's disease as a few mentioned above are in the same "family" as this.

The more I went back and read the more it sounds like this. Please look into it!! This is a very "new" disease and Drs do not know about it!! NONE of the specialists we saw had the first clue and all told us the wrong thing to do which was continue to try to feed our son!!

The more we tried to feed him the more weight he lost.

It doesn;t sound to me that your son's feeding issues are environmental!!!! Please keep trusting your instincts and doing your own research. We finally had to go across the country to get my son diagnosed properly and find a Dr that knew what to do.

Please PM me for more info!!!!


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## wombat (Nov 3, 2002)

aslmere, I'm so sorry you're dealing with such ignorant therapists. I agree with you that nursing at night and lack of strict schedules isn't the problem, otherwise most of the babies at MDC would have this problem! My 19mo still nurses heaps at night.
ITA with what CaptainOptimism said. It is easier to start with blame the environment/parents. I hope they move beyond this quickly.

To get the therapists to dig deeper into the problem and to avoid the CPS issue , I'd just continue nursing and doing as your are and tell them you aren't night nursing and you're offering solids on whatever strict schedule they think is appropriate. I'd want to tell them to 'stick it' too but I think biting your tongue might be safer here.

Gee, I wonder why so many medical professionals have this idea that nursing prevents babies eating solids.

Carminex, I was reading an article recently about how eosinaphilic gasterenteritis, which I'd never heard of before, is becoming increasingly common.

BTW my dd was a poor gainer at times, but she never lost weight. I found she gained better when at 9 mo I started the 3 meals, 1-2 snacks a day. I got freaked when she was about to fall off the bottom of the percentile chart. Mind you they were pretty small 'meals' - like 2 tbs sometimes and snacks were mostly nursing to sleep for naps. The 'schedule' was more for my benefit otherwise I'd be spending the whole day preparing and offering her food to graze on, most of which ended up on the floor. I was also concerned she'd wean early but she didn't. She's always been a small eater. She's on the 4th percentile for weight now. She's always been very active and alert and it was just hard to get her to eat - after 1 or 2 bites, she'd rather be off doing something else. So I had to do a lot of entertaining to get her to eat more than that. We'd let her start off feeding herself then when she got bored, we'd give her a book or toy in her highchair and feed her some more. She'd take it willingly and let me feed her. I gave up on the idea that a hungry baby will eat/nurse with my dd! She also had chronic constipation and combined with her poor weight gain, the Drs wanted to test for cystic fibrosis. I thought that was rather far fetched and didn't do it. She's recently grown out of both problems anyhow.


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## aslmere (Feb 16, 2003)

I am printing this thread and going to show it to the nutritionist. She is the most helpful of the three "feeding" therapists and I know that she won't get offended that I posted about my frustration with them.

I can't talk to the dr until tomorrow.
The fill-in Dr. prescribed Zantac.
So far not much help.

Dh and I realized that the cute lip smacking that Conor does when he is asleep isn't actually cute.. it is him refluxing and trying to get it back down!
No wonder he nurses all night! Momma milk doesn't hurt as much and helps get it down!

I feel so awful for not realizing this before.

The NG tube is on continuous feed. He only gets a little more than an ounce an hour, but it is enough to keep him from feeling really hungry. So that yesterday he really didn't eat anything. He also didn't nurse as often. Only three times all day! I am at home with my toddler again last night. Tonight I will stay there and try and nurse him. He also won't drink any water out of his sippy cup or my water bottle which he usually loves to do. ARGH!

Thanks so much for everything!


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## aslmere (Feb 16, 2003)

Quote:


Originally Posted by *carminex*
what did they put in the feeding tube at the hospital?
many children with eosinaphilic gasterenteritis are on feeding tubes to get enough nourishment from special formula like neocate or elecare.

He is now getting straight enteric pediasure. I don't like it, but it doens't seem there are many options.
They want him to start drinking pediasure too.

I am intrigued, but have a feeling that I might be dismissed if I bring this up to the DR. I am starting to feel kind of marginalized by the whole system. Of course my son isn't as important as those in the hospital with serious medical conditions and I am just wasting time. If I had just fed him more than we wouldn't be there. (noone has actually said this.. but it is an impression I am getting)

Thanks for the Info
Nina


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## wombat (Nov 3, 2002)

A severe case of silent reflux could certainly stop a baby eating solids and cause weight loss. Drs often start with Zantac but often other meds are needed. Can I suggest you post about the silent reflux, reflux meds, the tubefeeding and the breastfeeding in the Getting Started and Overcoming Difficulties forum. There's been a few moms dealing with these kinds of issues. USAmma comes to mind as one. They might have some ideas about how to maintain BF under these conditions.

A request for info/research/links on the Breastfeeding Support and Advocacy Board may also give you better info to give to your nutritionist. I wouldn't print the thread out for the nutritionist for privacy reasons. I'm sure the LLL site and www.kellymom.com will have something.

BTW don't feel bad - silent reflux can be really hard to diagnose - the symptoms can be mistaken for so many other things. My dd wasn't diagnosed with silent reflux until 6 mo - we had all sorts of BF troubles - high palate, bad latch, thrush. It wasn't until we fixed all those problems up and she still feeding issues - arching her back, pulling off and on, continued poor weight gain that we tried her on Zantac. She only had a mild case of silent reflux but it was enough to make BF difficult. The Zantac was no miracle drug but it helped. My friend's baby had a more severe case, was seeing a GI specialist and was on Prevacid.


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## wombat (Nov 3, 2002)

Here's the kellymom link on reflux & BF:
http://www.kellymom.com/babyconcerns/reflux.html#causes

and from LLL
http://www.lalecheleague.org/FAQ/ger.html

Because kellymom and LLL both cites research sources, you could give them to your nutritionist. In some areas, LLL has a reputation for being fanatical (rather unfairly I think) so I'm not sure how your hospital will receive the info but they can't argue much with research based evidence.


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## wombat (Nov 3, 2002)

Quote:


Originally Posted by *aslmere*
If I had just fed him more than we wouldn't be there. (noone has actually said this.. but it is an impression I am getting)


Well if they'd diagnosed him earlier, he wouldn't be there either!

Mild reflux doesn't always need treating but when it's interfering with weight gain, then this is a medical indication for treatment. The doctor monitoring his weight should have realised this.

Seems his problem is environmental - his medical environment that is!


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## carminex (May 24, 2002)

EOSINAPHILIC diseases mimic reflux!!! My son was misdiagnosed with reflux for months!!! If the zantac does not help after a few days then it is more then reflux!!!
Doesn't pediasure have milk in it?
I know it is hard to buck the system but these Drs may be missing something! Has your son been skin tested for allergies? Eosinaphilic often comes up IgE negative to regular allergy testing but they still "react" to things by getting tummy aches and reflux symptoms.

My son does have both reflux and eosinaphilic gasterenteritis and is on prilosec.

Oh, I so hope you can figure this all out.


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## aslmere (Feb 16, 2003)

He is up a pound in a week and one day.
Becuase he can gain weight they refuse to look for anything more. This is frustrating.
Apparantly the reflux is the culprit. He has developed some serious food aversions because to him food=pain.

They still aren't addressing the root of the problem... where the reflux came from and why he still hasn't grown out of it at 12 months. They are just trying to help the pain lessen.

He has such serious aversions that it is going to take months to teach him to eat.

They want to put in a g-tube.

That means surgery.. but it also means we can come home, they won't let him come him otherwise until he is eating on his own.

Thanks
Nina


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## wombat (Nov 3, 2002)

Hey that's good his weight gain has improved. Are they going to continue therapy because of his food aversions? I'm not sure what therapy they do but I've heard of other babies around here with feeding aversions having therapy.

I've heard reflux can be partly genetic and also related to food allergies. If the reflux treatment is working (ie less pain and more weight gain), and he has no other symtoms, they probably just don't want to do further tests because they can be very invasive.

I hope it all works out well. It must be so hard watching your little one in the hospital.


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## ChristaN (Feb 14, 2003)

Maybe once you get him home you can take him to a naturopathic physician & have food allergy tests run. I had a bout with an intestinal problem a few years ago that the GI docs insisted was ulcerative colitis & refused to look any further into the cause despite somewhat shaky blood work that looked very suspicious for an allergy. They just said that it was a chronic, incurable disease & wrote me a prescription for corticosteriods to get rid of the symptoms.

I never filled the Rx & went to a naturopath who sent me to a lab to have RAST tests done. I came up with some significant allergies to foods that I ate a lot of. When I cut out the main culprits, my symptoms disappeared in 4 days & I haven't had a problem since.

You could always follow the docs recommendations while still looking into the allergies yourself on the side & trying some dietary modifications for yourself & your son to see if they help.


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## carminex (May 24, 2002)

Glad to hear he is gaining weight! Lots of kids on the yahoo group I posted before have G tubes. I HIGHLY recommend talking to other Mom's on that list. They are so great and can answer lots of your questions.
http://health.groups.yahoo.com/group/eosinophilgastro/

I also HIGHLY recommend emailing this Dr and telling him your story. He is THE leading Dr for eos and a fabulous GI Dr. We and many other families traveled from all over the country to see him. It was the best thing we ever did for my son. But he is willing to help as much as he can via email. A truly great, caring Dr.

INFO:

Dr Philip E. Putnam
> > Childrens Hospital Cincinnati
> > 3333 Burnet Ave.
> > Cincinnati, OH 45229
> >
> > I have a phone number from the Childrens Hospital of Cincinnati web
>site
> > 513-636-4415

[email protected]

http://www.cincinnatichildrens.org/s...aq/default.htm


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