Eating help for SID child

[megincl]

DS has SID and it has a major impact on his eating. He refuses to try new foods. He is really sensitive to textures. And, on top of that, he's allergic to tons of stuff, most importantly wheat, gluten, cow dairy, soy, and oats. So, he already has a limited diet.

Lately he's refusing to eat lots of what he can eat, leaving him able and willing to eat goat or buffalo yogurt, some fruits, and quinoa pasta (a bit more, but that's most meals). He's frequently saying he wants something and then not eating it. He also doesn't recognize hunger cues.

So, I guess it would be really useful to hear strategies for helping SID kiddos with eating, how to cope with him refusing to eat what we just prepared, etc. Just waiting for him to "eat when hungry" won't work, as he doesn't recognize hunger. Truly. But other strategies are welcomed.

Thanks for all help. Feeling like : over here.

megin

[Megamama]

I'd like to help but we're dealign with a lot of the same stuff ourselves..feeding therapy through your OT may be the best way right now.

[mamarhu]

I know this will be sort of a non-answer, but his diet doesn't sound that bad to me! I swear my boy ate nothing but popcorn for several years. Now he eats yogurt, fruit juice, and clear broth. Somehow, he remains fantastically healthy in spite of this. I am a health educator, with a minor in nutrition, and this goes against everything I was taught. And most of what I teach my clients.

I agree that a OT who had experience with feeding issues would be the way to go if you want to work on this. In my experience, all the usual tactics to get a typical kid to eat or at least try new foods will backfire. And then the dinner table becomes a stressful battleground. I generally ignore my son's eating. I keep unlimited quantities of the foods he eats handy. I occassionallly try to slip in supplemental vitamins or a nutritious food. He always catches me. I do offer a bite of whatever I'm eating, but for us, it goes best when I don't try too hard. I think it is important to not let eating become an emotional issue.

[sbgrace]

It is hard I know. I would certainly work with an OT who is good with feeding issues (they vary on what they are comfortable with). For filling in the gaps I give my son a healthy (with fats, protein, vegetables) smoothie after each meal. He also doesn't have hunger signals and he actually doesn't grow well without the smoothies. I put him in his chair at set times and I put the food out, favorites and new things, and if he doesn't eat it or eat much that is fine (having that smoothie helps me relax). Pressure and frustration and letting him know it bothers you will backfire in my experience. You want meal time to be happy and positive. So if you can figure out a fill in the gaps thing that might help you be able to keep it positive while you work on the sensory issues with OT that would really help I think.

[Finch]

Feeding therapy definitely, and here's a good book:

http://www.amazon.com/Just-Take-Bite...e=UTF8&s=books

AND, one thing that helped our son too was having "visual white noise" at the table for him to help de-stress. We got a little glitter lava lamp thingy (that's the technical term for it, yanno) at Spencer and put it on the table for every meal. He would watch the glitter float in the tube, and it would put him in sort of a relaxed mild trance, I guess you could say. When that broke (oops, clumsy mommy), we got one of those little wave machine thingies...the clear tube with blue water in it that rocks back and fourth and makes a wave. That helped too.

Have y'all started brushing again yet? (do I sound like your nagging mother? )

[megincl]

Originally Posted by Finch

Feeding therapy definitely, and here's a good book:

http://www.amazon.com/Just-Take-Bite...e=UTF8&s=books

AND, one thing that helped our son too was having "visual white noise" at the table for him to help de-stress. We got a little glitter lava lamp thingy (that's the technical term for it, yanno) at Spencer and put it on the table for every meal. He would watch the glitter float in the tube, and it would put him in sort of a relaxed mild trance, I guess you could say. When that broke (oops, clumsy mommy), we got one of those little wave machine thingies...the clear tube with blue water in it that rocks back and fourth and makes a wave. That helped too.

Have y'all started brushing again yet? (do I sound like your nagging mother? )

I love this idea (and all the others -- I have to see how regularly he'd accept a smoothy). AND, it's good to know that his super limited diet doesn't sound all that bad. Frustratingly (although thankfully), when he's at daycare he'll eat a whole lot more. Somehow the group setting helps him get caught up in the wave of eating things like, gasp!, turkey. Wowzers!

I'm definitely going to try a distraction device. We often read to him and just feed him, which usually works pretty well.

And no, haven't started regular brushing. It's been a heckuva week around here, but I know that's no excuse (hangs head in shame). Must start. Must start. Must start.

Thanks all,
megin

[LynnS6]

Hi,

I usually just lurk here, but I wanted to add that for our SID son, brushing has made a HUGE difference!! Not only brushing but the joint compression. Thankfully eating has never been an issue for us. Has your OT given you "mouth brushing" exercises to do? She suggested that for our dd when I commented on her being picky, but I think our dd is just a typical picky eater, not SID.

That and can you do some "organizing" activities before meals? Is he calmed by jumping? deep pressure? heavy motor work? if you can do some of those before mealtime, it might help him tolerate things a bit more.

Would a weighted lap blanket help too, along with the white noise?

[FreeRangeMama]

We did eating therapy as well. Some of the things they suggested was to "wake up" his mouth before eating. We used ice water with different straws and a toothette (also soaked in ice water) that we rolled around his mouth, on his tongue, and in his cheeks. We also had a thing that vibrated to roll around in his mouth. His problems were mostly related to undersensitivity so this helped stimulate the muscles in his mouth. We did different excercises with him as well like blowing bubbles or whistles.

Even though overall he was UNDERsensitve to things, he was OVERsensitive to different textures. He is a complex boy To help him accept new textures and tastes we had to very, very slowly change what he would eat by adding something he wouldn't. For example, we slowly added almond butter to his peanut butter. Just a drop at first, then slowly another and another until eventually it was all almond butter. The key was to up the amount so slowly that he couldn't tell. This was a challenge because he has an amazing ability to perceive even the slightest change. We would slowly make his yogurt thicker as well in the hopes that eventually he wouldn't be quite so fixated on "lumps" in his food.

Ultimately our gains were small, but any progress was good at that point. Eventually we had to take drastic measures to make him eat. But that was because he wasn't eating at all and his health was failing.

HTH.

[TudoBem]

It's interesting you said that he eats better at daycare. I was going to suggest that he eat around some of his young friends. My son will "sometimes" eat lentils and rice when he's at his neighbor friend's house.
My son ebbs and flows with his eating issues. They are either really bad or just bad. I would definitely suggest the feeding therapist, too.
For us, like you, we just try to find what he will eat at the moment and capitalize on it. Right now it's Indian dosa (plain or with cheese), hummous/cracker, gyro meat, French toast, and almond milk (we're in a good phase right now).
We started giving him those gummi vites, too. It took a while for him to accept the texture but he likes them now and I see it as another sensory experience because of the texture and chewing involved. Oh, we also do a little Floradix every day, too. He will actually accept it straight through a straw. I worry about his iron levels with his diet.
Good luck! Keep us updated on your progress!

[megincl]

All the insights here have been so great! DS did OT that was about 95% NON-eating related. We did, however, get a hard brush for use on his cheeks inside and out. We've not been good with doing that, so I think we'll get back on track.

Any suggestions for feeding therapy on the cheap? He had 60 days of OT through insurance and was not reapproved. He's now on an IEP with the public school for OT but only gets 30 minutes a week. At our next meeting with the OT I'll ask about feeding stuff, but I'd love for him to get more concentrated help -- it's just that we really can't swing paying for it (or paying much, at least). It's about $100 a session for a group setting eating group at his old OT place. Can't swing that. And I don't think insurance will help because he is growing, gaining weight, etc...Any ideas?

Thanks wise ones,
megin

[Strong Mama]

Ill tell you what helps my ds. Before a meal or food time, I let him carry around his backpack with heavy cans of food( like 3 cans of peas) and it seems to help him eat better. Sometimes we go to the indoor bouncy center and after he bounces for an hour he is starving and eats a lot more different foods. Try having your son jump on the bed or rough/tumble play before eating something.