Feeding therapy for teens?

[Innisfree]

I'm not sure if feeding therapy would be appropriate here or not.

Dd13 (ASD, etc.) has always been unable to drink water, and since preschool years, she can't handle milk either, even with chocolate added. She finds them revolting, to the extent of having a gag reflex. I've brought this up with her peds several times, but they seem completely unworried. They do know we try to stay away from sugary beverages, and that seemed to be their main concern.

I'm having increasing trouble keeping her adequately hydrated. While we try to avoid sugar, I'm not crazy about constantly using aspartame, either. Since we also need to avoid artificial food coloring, her choices are limited, and they all seem to have drawbacks. Stevia would be my preference as a sweetener, but isn't in most of the things she can drink. Buying all this stuff is expensive, too. I really want her to drink milk and water.

Does feeding therapy handle this sort of issue? Is she too old for it? Wwyd?

Edited August 13, 2018 by Innisfree
Edited for clarity

[PeterPan]

Yes on the feeding therapy. Finding someone who's good at it might be hard, but yes you're looking for feeding therapy. Around here it's usually SLPs, sometimes paired with an OT. 

Is there any chance there are retained reflexes? Sometimes the body is weird and things are connected. It might be something to try. (I have no clue, just saying.) You can look at Pyramid of Potential for the list and then youtube for the tests and just see if anything turns up.

What will she drink? Tea? Juices? If she'll drink juice, will she drink it partially diluted? Like I drink cranberry juice (unsweetened) and I dilute it. Trader Joes has a really good pomegranate juice, like amazingly good, and it still tastes good even diluted. So if she drank it slightly diluted at first and then you slowly increased the dilution factor, maybe that would get her closer to your other goals? Lots of people like their water with stuff, so kind of that approach but working backward from full product she tolerates to diluted. I have no clue if that would work.

Yes, definitely pursue feeding therapy and ask around and be picky. Like not to say anything about anyone's chosen profession, but these people abound and will take you even if they're not the best choice or the most experienced. You probably only have one try if she'll even go in the office. If she won't go in the office, you're talking a consult with things for you to try. I'd definitely look into the OT angle too. You just never know. And is she on anxiety meds?

[Innisfree]

Yes, on anxiety meds.

I've read about retained reflexes in the past and did the tests which are supposed to indicate their presence. No indication of problems. She did OT for a year or so, but we didn't really see any benefit. The therapist did not being up retained reflexes, as far as I can remember.

She loves juice, so I'll try the dilution idea. We've tried British cordial-type drinks which come in concentrated form, intended to be diluted-- lemon barley water, Ribena, that sort of thing. She loves some of those, but won't drink them at the intended dilution. She puts in too much cordial. She loves soda, which we try to limit to diet forms. We use a lot of powdered Pure Lemon-type mixes to go in water, but she's gotten to the point she really only tolerates them. She won't drink enough to keep her hydrated. In summer, she practically lives on watermelons. No tea, though we've tried. She'll drink coffee, but only with lots of (ironically) milk and sweetener. That's actually the only way to get milk in her. I mix milk and coffee about half and half.

If that's the sort of thing a feeding therapist will do, I can try it here. And yes, her cooperation will be limited. She is starting to feel embarrassed about not being able to drink what the rest of us do, so she may be willing to try, but not all that willing. If this is in feeding therapy territory, I'll see if I can find someone good. Thanks!

[geodob]

Has she tried different types of water, than tap water?

[Heathermomster]

Does using a straw help?

[Innisfree]

51 minutes ago, geodob said:

Has she tried different types of water, than tap water?

Like bottled water, or carbonated water? Yes, she's tried them. No go.

13 minutes ago, Heathermomster said:

Does using a straw help?

No, it's the taste, apparently.

[Gobblygook]

Have you tried water enhancers? Stur uses stevia and is available at Target. There are a few flavors - they’re pretty good!

[Innisfree]

20 minutes ago, Gobblygook said:

Have you tried water enhancers? Stur uses stevia and is available at Target. There are a few flavors - they’re pretty good!

We've used various things of that sort, but I hadn't seen that one. It does look worth a try, thanks!

I'd still just like to get her past the insistence that she can't drink plain water. For the rest of us, adequate hydration is simple: drink a glass of water. Repeat often. But dd13 is so focused on the flavors, which she prefers, which she doesn't like any more, which she literally cannot swallow, that she will go thirsty rather than consume what she does not like. She often gets to dinner time without having had any liquid, if I don't stay on top of her and insist. 

[kbutton]

I have no suggestions other than to say that I think you are trying good things and that feeding therapy sounds like it could really help. I don't know if you do ABA, but at some point, if the therapy goes well, maybe there would be an ABA plan you could use to reinforce the new skill until it's maintained. 

I did want to chime in about hydration requirements--they do vary from person to person, shockingly so. I need a lot of water, but my DH is basically a cactus unless he's doing a lot of physical work or exercise. I think he's gone whole days on a couple of cups of coffee (which dehydrate me because they are diuretic) and fruit. I've known him to literally say he's going to eat an apple because he's thirsty, lol! (An apple would MAKE me thirsty because all sweet things are sticky.) His whole family is this way. 

Anyway, you might consult with someone on what really is adequate intake if she's not having headaches, dizziness, lack of urination, etc. that would indicated dehydration if you happen to be on the high needs side with your own intake.  

I do think pursuing a solution is good though--she might have to be able to drink water in a pinch or end up with an IV. 

[Pen]

Would she drink water with some Natural Calm plus Calcium in it? Pretty good flavor and would give some magnesium and calcium too.  I don’t know what the sweetener is.  ETA  on my bottle the sweetener is stevia  

Or a tiny bit of stevia and a bit of lemon juice?

Edited August 14, 2018 by Pen

[Innisfree]

Thanks, guys.

9 hours ago, kbutton said:

 

I did want to chime in about hydration requirements--they do vary from person to person, shockingly so. 

Anyway, you might consult with someone on what really is adequate intake if she's not having headaches, dizziness, lack of urination, etc. that would indicated dehydration if you happen to be on the high needs side with your own intake.  

 

I'm sure this is true. I've been letting this go for years, literally, because it wasn't my hill to die on as long as she seemed healthy. This summer she's been showing signs we need to address it, though. Using ABA to back up any progress is a great idea; we aren't doing it formally atm, but I can definitely apply the principles.

1 hour ago, Pen said:

Would she drink water with some Natural Calm plus Calcium in it? Pretty good flavor and would give some magnesium and calcium too.  I don’t know what the sweetener is. Or a tiny bit of stevia and a bit of lemon juice?

We'll give that a try, thanks!

I got a referral from the ped today. Tomorrow I'm going to try to call and sound them out. The ped recommended a group of dieticians, so I want to find out what their experience range actually is. Maybe they do feeding therapy, maybe the message got garbled between me and the pediatrician.

[Kanin]

I make a pretty good lemonade/limeade with water, lime or lemon juice, and stevia powder. I get the kind that comes in packets like sugar packets. 2 packets is enough for me for a quart of water, but your DD might need more sweetness. I hope you get good help from a feeding therapist! ((hugs))