Need help with thickeners for swallowing issues

[Wild Lupine]

DS has his liquids thickened because he aspirates thin liquids. They have always given him diarrhea, both the corn based ones and xanthan gum based ones. For a long time, the diarrhea wasn't bad, just once a day. Over the past two weeks it has escalated, now it's several times a day to the point I'm worried about dehydration. We know it's the thickeners because we took him off and the stools went back to normal. But he aspirates, so he needs thickeners! His ability to eat solids is very limited so he relies a lot on liquids for calories and nutrition.

I'm contacting his doctor and swallowing specialist tomorrow, but given how close we are to the holiday weekend I'm afraid we might not be able to resolve this with them until next week (and they've never had much advice, just expressed surprised that both types of thickeners loosened his stools).

So I'm wondering if any of you have any suggestions for how we can keep him hydrated and nourished safely, if you know of other things we can thicken with besides Thick-It and Simply Thick? I've tried mixing his milk with yogurt and that was OK, but he didn't drink much of it.

[khaoskat]

We also have a DS who has issues with swallow.  Fortunately, we have not had to go the route of thickening, except a trial while hospitalized. We have significant penetration, but not aspiration (he was 4 1/2 months when diagnosed through a swallow study for reflux.

I guess I would want to know how thick he needs - nectar, honey, molasses, etc.

Also, when we had the issues, one suggestions that was given to us, by an OT who works with children in the NICU who deals with these types of things for BF babies, is to use the Dr. Browns bottles.  

I know that when you cook, you can thicken a rue of water/flour, but that is probably not helpful for you.

[changingseasons]

Does it just need to be some type of starch to thicken it? Maybe arrowroot? Or agar (though that would be WAY expensive, and definitely more allergenic than arrowroot.) I definitely wouldn't try any other type of grain/flour if he's reacting to corn.

btw- xanthan gum is usually made from corn.

[Momily]

We only thickened with "real" food.  Babyfood barley cereal when he was little and then either babyfood texture fruits and veggies (yes, veggies, I couldn't believe he'd drink it but he seemed to think that applejuice with green beans was a totally logical beverage) or yogurt.  The one thing I wished was that we had tried unsweetened yogurt because by the time we weaned him off the thickened liquids he had clearly learned that "drinks" are supposed to be sweet.

I should say that he had a feeding tube from 9 months until 2 so he wasn't getting 100% of his hydration from these.  I'd check with a professional before using them to make sure they work in your situation.

[gsmom]

Could you just use something like applesauce or yogurt to thicken liquids?  

My son is on the ketogenic diet and our dietician recommended guar gum when he was still eating orally.  We tried it and it worked after several trials to figure out how much to use.   

[khaoskat]

This seems to be a new product...just introduced/launched in the last couple of months.

http://gelmix.com/

It is claims to be made of carob bean. 

[Wild Lupine]

Originally Posted by khaoskat 

We also have a DS who has issues with swallow.  Fortunately, we have not had to go the route of thickening, except a trial while hospitalized. We have significant penetration, but not aspiration (he was 4 1/2 months when diagnosed through a swallow study for reflux.

I guess I would want to know how thick he needs - nectar, honey, molasses, etc.

Also, when we had the issues, one suggestions that was given to us, by an OT who works with children in the NICU who deals with these types of things for BF babies, is to use the Dr. Browns bottles.  

I know that when you cook, you can thicken a rue of water/flour, but that is probably not helpful for you.

He has been having liquids thickened to honey consistency, but now we're down to nectar most of the time, honey when he's tired.

Originally Posted by changingseasons 

Does it just need to be some type of starch to thicken it? Maybe arrowroot? Or agar (though that would be WAY expensive, and definitely more allergenic than arrowroot.) I definitely wouldn't try any other type of grain/flour if he's reacting to corn.

btw- xanthan gum is usually made from corn.

We can use anything edible to thicken. I didn't know xanthan gum was made from corn. I thought it was its own thing.

Originally Posted by Momily 

We only thickened with "real" food.  Babyfood barley cereal when he was little and then either babyfood texture fruits and veggies (yes, veggies, I couldn't believe he'd drink it but he seemed to think that applejuice with green beans was a totally logical beverage) or yogurt.  The one thing I wished was that we had tried unsweetened yogurt because by the time we weaned him off the thickened liquids he had clearly learned that "drinks" are supposed to be sweet.

I should say that he had a feeding tube from 9 months until 2 so he wasn't getting 100% of his hydration from these.  I'd check with a professional before using them to make sure they work in your situation.

Thanks for the suggestions; I'll try baby food for his milk and veggies for his juice.

What did you use when you were out?

Originally Posted by khaoskat 

This seems to be a new product...just introduced/launched in the last couple of months.

http://gelmix.com/

It is claims to be made of carob bean. 

Looks good, a bit pricey, but it's good to have more options.

[queencarr]

We had this problem for a while using thick-it with the diarrhea and a resulting terrible diaper rash, but it went away after a couple of months.  We used a diaper paste compounded by the pharmacy (Pittsburgh paste) until then--it was the only thing that helped.  Isaac would not drink anything made with the gel thickener, and the other powder one that I can't think of the name was cross contaminated with eggs (LTFA to egg).  But you can use anything pretty much to thicken stuff.  We use a combination of rice and wheat baby cereal to thicken milk  at night at this point, and taught Isaac to take very small safe sips using a straw (called a pinch sip), so he drinks small amounts of regular consistency liquids now, although we still thicken nighttime bottles to make up about 1/2 of his needed liquids.    If you haven't already, you might see a speech language pathologist that works with swallowing and feeding issues and see if they can help you with some techniques to teach a safe swallow (depends on what is abnormal in the swallow wh,,t if anything, you can do).  It took some repetition and practice, but we have been pretty successful in teaching Isaac how to manage his swallow safely, and he hasn't had pneumonia in 2 years! 

ETA:  We know Isaac's reaction was not due to allergy to corn, as he had extensive allergy testing around the same time due to severe reactions to multiple foods.  It did eventually go away, but took several months IIR, and I can remember going to the ped in tears because he had to have the thickener but he was blistered and raw from the diarrhea, and I didn't know what to do either.

[Momily]

Thanks for the suggestions; I'll try baby food for his milk and veggies for his juice.

What did you use when you were out?

I don't know how old your little guy is.  When mine was under 9 months we did Nutramigen thickened with Barley, whether we were home or out.  I just made up the bottles, put them in a cooler and off we went.  He was then off all liquids from 9 months until about 20 months.  When we started it was really controlled, and for a long time he just didn't drink outside the house Remember he had a tube at this time so I could give him water or formula all night long. 

When we did go out, I'd either bring the yogurt (I used the little vanilla Yobaby) and add it to the milk or juice at the last minute, or I'd mix up juice or water with pureed fruit or veggies before we left and just shake really well before I gave it to him.  We used a straw cup whenever outside the house.

[melissa17s]

ener-g makes a potato starch to  thicken soups and stews, which might work. I got it at the health food store.  I also use arrowroot to thicken sauces; if you are heating the liquid, you could also make a roux.   My experience with agar agar is that it is harder than jello.  You could get some agar agar or gelatin and add less then suggested, perhaps, but I also think the liquid needs to be heated to work.  I think the baby cereals might help, too, like the rice porridge.  

[Momily]

Originally Posted by melissa17s 

ener-g makes a potato starch to  thicken soups and stews, which might work. I got it at the health food store.  I also use arrowroot to thicken sauces; if you are heating the liquid, you could also make a roux.   My experience with agar agar is that it is harder than jello.  You could get some agar agar or gelatin and add less then suggested, perhaps, but I also think the liquid needs to be heated to work.  I think the baby cereals might help, too, like the rice porridge.  

I'm almost positive that you shouldn't be thickening with gelatin, if agar agar is similar I'd stay far away.  The texture of jello is way different from thickened beverages, it's slippery, and easy to lose track of in your mouth,  It also melts so you'll have a mixture of thin and thick liquid, which is one of the very hardest textures to manage.

I know I made suggestions myself, but given how risky aspiration is, I'd suggest that you take this list to your child's therapist or other professional before experimenting too much.

[ashleyhaugh]

forum crashing, but this is interesting to read. i work at a daycare, and we have a little guy with aspiration issues, and reflux, among other things, and they started using thick-it (i think, the xantahm gum one) in his formula and baby foods a few months ago, and it gives him terrible diarreah too, as well as making it smell awful

[skybluepink02]

My daughter recently weaned from thickeners, and we always had to use baby cereal to thicken. We has similar issues as you. It was easy to control the thickness and cheaper, since our insurance wouldn't cover thickeners.

[anj_rn]

baby cereals are easiest for us.

We found it was not the thickeners, but the quantity of times we used them.  So one or 2 times a day is fine for us, more than that is a problem.  The more we use them, the bigger the problem.  DD does not have a corn allergy (as she can tolerate corn and other corn products fine).  We have found that Rice cereal stops her up, so we alternate the rice cereal and simply think and end up with normal stools.  You can also bleng high calorie smoothies to the right consistency to get the calories.

[tonttu]

I´ve had the same problem with my oldest son , now 13 . He´s on the developmental level of a 3-4 months old after a brain injury , when he was 51/2 months old .

He cannot chew his food and chokes on anything liquid .

We have also used the thickeners and he had horrible diarrhea from it . Our ped told us , it´s because of the starch , it´s similar to a high-fiber diet , that´s why he likes to use it with kids , who are on a feeding tube and suffer from constipation as a result of (sometimes) poor general diet . So , if your son doesn´t have that problem , they can probably do more damage than good . We ended up using baby cereal , milk shakes and smoothies and in not-sweet foods even instant potato flakes , which work quite well . 

What I like about those , is , that you can really mix them to the thickness , you want , plus they provide extra nutrition , which was an issue for us .

DS´s food just didn´t get prozessed the way it should , and he was and is quite skinny , even though , I really watch , what he eats .

[melissa17s]

Originally Posted by Momily 
I'm almost positive that you shouldn't be thickening with gelatin, if agar agar is similar I'd stay far away.  The texture of jello is way different from thickened beverages, it's slippery, and easy to lose track of in your mouth,  It also melts so you'll have a mixture of thin and thick liquid, which is one of the very hardest textures to manage.

I know I made suggestions myself, but given how risky aspiration is, I'd suggest that you take this list to your child's therapist or other professional before experimenting too much.

That is good to know about gelatin or agar agar; probably should not use either.  We use agar agar as a vegetarian sub for gelatin and because it is something DH grew up enjoying (common in Asian desserts).  One thing that is different, though, than gelatin, is that it keeps its texture at room temp, where gelatin will melt unless refrigerated.  
 

[Acony Bell]

Wow... we thicken liquids for our youngest dd (severe GERD) and in the fall she had unexplained diarrhea for about 2 months... then just got things firmed back up gradually. I didn't even consider the thickeners b/c she had already been on them for awhile. Maybe they just adjust to it after time. We use Simply Thick Honey with all her liquids.

[mrsfru]

ETA:  We know Isaac's reaction was not due to allergy to corn, as he had extensive allergy testing around the same time due to severe reactions to multiple foods.  It did eventually go away, but took several months IIR, and I can remember going to the ped in tears because he had to have the thickener but he was blistered and raw from the diarrhea, and I didn't know what to do either.

I just wanted to point out that kids (anyone, really) can have a reaction to something, but not test positive with standard "allergy" testing.  There are other types of allergy testing...and there's also that corn is loaded w/fructose, which in and of itself can cause diarrhea.  That's why pediatricians call it "toddler diarrhea" from too much juice, esp apple juice (also high in fructose).  Our oldest son had constant diarrhea for a good year, and lots of GI visits, till we figured out the corn connection (more accurately, the fructose connection) for him.  We were lucky that his early reflux and feeding issues didn't include dealing w/aspiration and thickening. 

GL!

[RiverTam]

Re: baby food.

If he doesn't tolerate the barley cereal, baby rice cereal might work. 

[Wild Lupine]

Originally Posted by RiverTam 

Re: baby food.

If he doesn't tolerate the barley cereal, baby rice cereal might work. 

We've been having success with oat and rice cereal. They have the added benefit of boosting his calorie and nutrient intake, too.