FTT Need Advice

[Anonymous]

We took our 2 yr old in for her check up with the GI dr. He said she only gained 1 oz(she weighs 22.11) in the last 2 months! He has labeled her FTT. He said grudgingly that she is not malnourished now, but would be later. He blames it on- in a round about way- my still b/f her and excluding milk products. I have explained to him that we tried milk products on 3 seperate occassions with the same results: She does well for a few weeks and then she gulps all day long as her acid flares, so we stop milk products and she gets better. He refuses to acknowledge that milk aggravates reflux, he insists that only happens to babies under a year. He also insists that breastmilk after the first year has no value. He needs to get acquainted with LLL and WHO.

He had us talk to a dieticion again, and she admitted that milk CAN aggravate reflux (thank you!) but that we need to find out if it is the milk protein or the lactose she can’t tolerate, instead of eliminating everything. She wants us to give her Pediasure since it’s lactose free and see if she develops symptoms. She also forgot to mention what to give her, if she wouldn’t take the Pediasure. My husband thought it was a good idea, but it makes me upset that no one believes me. I just hate to put her through anything. But I agreed to do it, I don’t want them saying I am sabotaging my dd health. Now, she won’t drink the Pediasure, and we have to go back to the GI in a month so they can monitor her weight gain.

The worst part is we were supposed to try weaning her from Prevacid, but we can’t do that now. If we did then we wouldn’t be able to tell what would be causing her acid flare(if it happened) the milk or the wean .

I just don’t know what to do anymore. Please someone help me.

[Anonymous]

I think the dietician makes more sense than the doctor. It is possible that it’s the lactose that’s bothering her. Although I’ve never heard of lactose intolerance causing reflux, I can tell you that I am lactose intolerant and the pain can be unbearable. My stomach gets so upset (that’s putting it mildly) and the symtoms are weird. Sometimes it feels like a stomach with diarrhea. Other times it feels like gas. And sometimes I get very nauseaus. Many times it’s a combination of those things. It’s very miserable. So I can see how lactose intolerance could cause symptoms that would mimic reflux or worsen reflux. If it were me I’d try the Pediasure for two weeks like the dietician said and take it from there. If she does fine on it then it’s probably safe to assume that lactose is the problem. If she has problems then you’ll have further evidence that she can’t handle milk.

The doc seems very insensitive and arrogant. There’s nothing wrong with nursing your two yr old and how can he say that mother’s milk has no value after a year. That’s ludicrous.

What else does she eat?

Good luck. I hope you find the answers you need and she begins to put on some weight.

[Anonymous]

I’m sorry that you’re going through a hard time. Having a child with a feeding aversion, we’ve had to be very conscious of weight gain, so I know what that’s like.

I hate to comment on other people’s doctors, but I’d personally wonder about a doctor (and a GI of all things!!) who isn’t afraid to say that BF after age 1 is of no value…. maybe his name and address need to be “secretly” given to both the WHO and the LLL, so some reading material can mysteriously arrive at his office. I don’t knoww too much about breastfeeding beyond the infant stage, but maybe Laura can hook you up with some links or forums where they can offer you some suggestions about how often and increasing weight gain in BF toddlers.

My personal philosophy about weight gain after what we’ve been through, is that if the child is eating/drinking happily in that they come to the table happily, they eat a normal amount for them (no matter how big or how small), and that they’re not in pain when eating, then you probably don’t have to worry. I think that most babies and children will self-regulate and will eat as much as they have to reach their setpoint, no matter how low that is. The other side of that is that I do believe that children who are in pain or with feeding aversions might not be able to gain enough to reach their set points due to fear of eating or pain. What is your daughter’s eating like? How often does she nurse?

The other thing I’ve learned is that when you have to eliminate certain food groups from a child’s diet, even if they’re a decent eater, it can be hard to get them to gain weight. But MANY MANY kids with allergies and intolerances do it, so I don’t think that you should have to worry about malnutrition. Weight gain really slows around your daughter’s age, and we actually had a bit of a loss rather than a gain somewhere between the first and second year in Hailey’s case. She picked back up, but only gained a couple of pounds through an entire year, and all the doctors we saw (and it was A LOT) told us that it’s not a problem.

Given the severity of your daughter’s reflux by pH probe, I’m assuming that she had an endoscopy. If not, that might be something that you want to consider to make sure that you’re not dealing with EE. Also, given that her reflux still flares at age 2 with dairy, I wonder if an allergist might be of any value.

About dairy trials, maybe if you paste this thread under there to make sure the right people see it, maybe others will be able to help you. We were told by several GIs and feeding specialists that lactose intolerance is very rare in babies, and typically lactose intolerance presents itself with bloating, gas, and diarrhea vs. MSPI. That’s only what we were told (and I know that can often be wrong!).

I don’t really know what to suggest about the pediasure trial. Intuitively it sounds like a fine idea to me, but I don’t know that much about food trials. If you need some high calorie ideas to add into her diet, I’d suggest adding flax seed oil and non-dairy margarine (as long as she tolerates soy) to her food for calories. What does she like to eat? Does she drink anything from a cup? I know that some people use rice milk or almond milk, but it’s not so heavy on the calories. We do soy, and we’ve added fillers for calories, like duocal. Your dietician should be able to help you with that if you’re interested. Also, you can ask your dietician about the neocate splash juice boxes or resource juice boxes- they’re supplements, and the neocate ones are definitely free of most allergens. You can check out their website. You can also make high calorie smoothies with fruit, soy yogurt, flax seed oil, etc. I know a mom who used to also add chocolate syrup for calories (not that healthy, I know). Also, I would ask the dietician about adding a multivitamin to ensure that she gets all that she needs, since she’s over age two.

Good luck.

[Anonymous]

is your daughter eating plenty of solids? with your daughter’s ph% being so high, have they considered doing a fundo?

when sylvia was FTT we were able to keep her from getting a feeding tube by giving her pediasure. she did not want to take it at first. we had to gradually add it to her bottle.

kevieb2007-08-14 20:27:56

[Anonymous]

We also have a dairy/soy intolerant son.. so we give him rice milk mostly.. and a bit of goats milk (you might want to try goats milk as well.. it does have a slightly different protien make up then cows). She does not NEED dairy though.. so don’t feel pressured to give her dairy. She needs plenty of fat/protien/and calcium however. How does she do on with soy? Maybe soy milk/yogurt?

As for added fats…we add flax oil to his diet.. we add olive oil to EVERYTHING..we give him almond butter on toast (high in protien and fat)..and we put avocado (high in fat) on toast as well.

I would not give up breastfeeding.. I would add more fats to her diet..AND give her a multi-vitamin w/added calcium.

[Anonymous]

Kevieb: No the Gi hasn’t suggested that because he said her reflux is mild. He said it didn’t matter how many episodes she had because it wasn’t extremely acidy and it didn’t last long. He said she was able to neutrelize it with her salivia.

We try to give her soy milk very vanilla, and she hardly drinks it. She doesn’t like soy/rice milk, or juice. She just likes water and breastmilk.

Ironically she will eat a lot of her “favorites” such as chips, wheat thins, french fries (store bought, home made, fast food), cookies, some veggies, grapes, watermelon and graham crackers.

There would be no problem if she would eat her meat the same way. Really fustrating. When we gave her some vanilla pediasure she tasted it and said yucky. She later poured the whole bottle on the table.

[Anonymous]

Not to repeat myself.. but just asking about the yogurt again.. maybe she would like the soy yogurt? And I also wanted to let you know a “safe” butter is Earth Balanced that is Soy based.. and their is also Smart Balance LIGHT.. that is OIL based.. including flax oil. We add it to a lot of his foods including waffles… and it really boosts his fats intake.

[Anonymous]

julia—how does he know she is able to neutralize it with her saliva? i guess he must have also done a scope with biopsies and saw that there was no damage? he is right that the number of refluxes isn’t that significant. it is more significant if they have prolonged episodes of reflux, but her overall % is still pretty high. sylvia had way less episodes of reflux, 97 i think, but her overall percentage was really high—-it was almost 25%. she was having prolonged episodes of reflux that were doing alot of damage.

i thought i heard someone say that above a certain percent, more aggressive treatment was considered—such as a fundo. i can’t remember the percent—but i think it was lower than what your daughter’s is. i may be way off on this because it was not something i heard from our own doc. it just seems like your daughter might need some more agressive treatment or maybe some new tests done—-when was her ph probe done?

i may not be understanding something here, but it seems to me that even if her saliva is able to neutralize the acid, that isn’t going to do her esophagus any good because the acid would have to travel all the way up her esophagus to her mouth to get neutralized—–or your daughter would have to be swallowing constantly to get the saliva down to where it is needed. seems like there is room for plenty of discomfort and damge to happen.

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