Thursday, March 21, 2013

Group therapy: Share your tips for special needs feeding issues

"I have two little girls 3 1/2 and 21 months old, both were just diagnosed with a chromosome 4 abnormality," the email read. "They have speech delays, developmental delays, seizure disorders, intellectual delays and the list keeps going. What I am really am writing you about is feeding issues!!! My girls hate, hate, hate eating unless it is puree and easily swallowed. Boy, could I use some advice. My oldest has seen specialists, and it's still a struggle. At one point she was living on bottles of Carnation Instant Breakfast drink! I know I should really speak more with the specialists but I am sick of people who don't deal with this three times a day, seven days a week telling me 'Keep doing what you're doing.' I just need something that works."

My heart went out to this mom, because I knew how she felt. None of the NICU doctors warned us about feeding issues, and so when Max started solids at six months, I was surprised that so much dribbled out. And sad, too, because Max already had so many challenges to overcome.

Max had difficulties with tongue coordination and swallowing, along with jaw weakness, all of which would make speech difficult, too. Feeding him a jar of baby food could take a half hour: we'd spoon some in, spoon back in what came out, repeat, repeat, repeat. Bottles were a mess because retaining liquid was even harder; Max would sop through the burp cloths I'd tuck under his chin.

Max is still mostly eating mushy stuff, and I just had a conversation with his longtime speech therapist about feeding him strips of melted cheese sandwiches to help get him chewing more on his back molars. To strengthen his jaw, before mealtimes we're putting a Chewy Tube stick on the back of each molar and having him bite 10 times per side for a total of 40. I asked his teacher if the aides in his class could do this at lunchtime, and emailed a photo:

I emailed this mom back to recommend she try to find other feeding specialists (she lives around Harrisburg, PA, so if you happen to know of a good one in the area, please share). I also told her about how we thicken liquids for Max with substances like Hormel Thick & Easy. And I offered to share part of her email here, to get more suggestions. 

Every kid with feeding issues needs personalized help, of course, but if you have great strategies that have benefitted your child, please share (and nobody try these at home without consulting an expert). 


  1. hi ellen, There is a great feeding clinic at the philadelphia children's hosptial . Both of my kids have gone throw the clinic, thy were 2 and 5 at the time. It did help to eat new foods and to eat better.

  2. There's no need to live off Carnation Instant Breakfast if your children will only eat purees - purchase a VitaMix and make a homemade blended formula for them. VitaMix gives discounts to families with feeding issues, and it's totally worth the cost to give your kids a well-balanced diet. Marsha Dunn Klein (who often works with Suzanne Evans-Morris, feeding specialist extraordinaire) wrote a great book called Homemade Blended Formula. We worked with this book and a nutritionist to get us started, and we've been working from the book on our own for several years now. Worth every penny.

  3. The two feeding programs I like best are "Food Chaining" and "SOS Approach to Feeding". These are primarily for sensory issues. And, like you said, these should be monitored by a professional.

  4. Might help to get them eating stuff that looks like normal food but has puree consistency? You can do this with Thick n Easy, it's pretty magic.

  5. I am also going throw some of this that my 6year old will only do yogert and soft foods he now has taken on to eatting cookies and toast that helps but I have been told by are doctors and are therpist that if they eat some things that okay but I have said that I am hand feeding him wishing he would take on feeding him self and he takes along time to eat things so when some one eleise is at are house and offers to feed are boy we let them its a great baby crear too we had friend she want a baby so bad that we had her come for all the evening meals she now said that did it but any how we are always trying but things are not working out for us eather

  6. My heart goes out to you!! My son, Gavin, is 5 1/2 and is still eating purees. That's fine with me at this point - because I know he's getting proper nutrition to nourish his brain. I got a lot of help from a doctor who specializes in treating brain injured children through nutrition. You can find her book on Amazon - it's called "Healthy Brains, Healthy Children" by Coralee Thompson. Also - this may sound like completely bad parenting - but we bought a little DVD player for the kitchen table. Gavin eats in front of his favorite shows (Little Einsteins) every meal. The distraction is so helpful and feeding him goes from an hour - to a half hour. We are working on having him feed himself - and we do give him solids here and there that melt in his mouth, just so he keeps getting practice. But while his brain is young and still changing and developing, nutrition is paramount to me. I'd be happy to share my puree recipes with you if you want to email me at kmg41470 at yahoo. I make his food in bulk and store it in the freezer. I seriously only need to do this once every 2-3 months. It makes life SO much easier because, let's be honest, we have so much to deal with besides just feeding.

    Good luck to you! I hope this helped even a little. I can't wait to read all of the other suggestions!!!

  7. Oh boy... I can absolutely 100 % empathize with her. I've been trough and still go through the same. It's a nightmare to do it "three times a day seven days a week" as she says. Its al lot and overtakes everything. And I can also understand that she doesnt want to see any specialists at the moment. I think to make my son eat was the hardest thing I've ever done/do in my lfe.

    What helped was to give him a high caloric drink once or twice a day to make sure he gets what he needs. Then relax (I know not easy) and have a stable eating scedule. When he didnt eat much for lunch I waited for afternoon or evening and so on. I had to learn to forget if it didnt go well and look forward to the next time.

    After introducing those drinks it slowely took out some tension of the eating situations and my son could relax more and he started to enjoy eating (a bit). I think before we were in some sort of dead end. Both of us just hated if foodtime arrived and it was a stress situation.

    My son is a very skinny and small guy and also extremely active and buns everything right away. I also had to learn that he knows exactely when he has to stop eating. He never ever overeats. Still not. Not even with chocolate. I sometimes think he must have been some sort of ascetic monk in his former life and thats why he has a bit a different approach to eating.

    But after all I think this advice to give him this high calorie drink was the best advise I got so far. I dont know if something similar exists in USA (I'm from Switzerland). Here a link to the one I give. Unfortunately not so cheap. One bottle has almost one meal of calories in it.

    My son still has one drink in the mornings and one every day in school because he doesnt eat there at all. Like this I know he gets what he needs and I dont have to worry.

    It wasnt easy for me to accept that he gets so manc articifal stuff. I love healthy food and would love to feed him more natural things. But one day he will ;). He is now 5 and starts to eat better... But I still have to feed him. He only eats "hard stuff" alone. Like bread or so.

    Of course it has to be monitored by a professional but at the end the mother has to sit down three times a day and go through it. So she needs to find out what works for her (!) and the kids.

  8. My son is almost 4 and has had a Mickey button since 2 months old. Feeding has been a huge struggle for us. We just recently got him down to 1 tube feeding a day.

    Tips that worked for us:
    Giving pediasure in between meals to keep up his fluids and supplement calorie's. Using the chewy tube/veggie sticks to practice chewing before every meal. My DS still drools them out but enjoys the crunching activity. Continually increase the thickness of the puree (we use the dipping method). We dip a thicker puree into a thinner one to mask the increased texture. Add cookie or cracker crumbs to foods to thicken them (yogurt, fruits). We just recently started making muffins and pureeing them and adding mashed fruit for breakfast. We also watched TV for the first 3 years to get my son to actually try to eat. We just recently weaned him off of TV and use it as a reward now. He received feeding therapy at school and also through our insurance at home and we see a nutritionist that helps with our food creations. My son also has a dairy allergy so we can't eat the usual creams/cheeses to add calories. We use margarine,and oils to add calories. My best advice is to be very consistent. I did 3 meals a day for 2 years and my DS never ate anything. Then one day he ate a stage 1 jar of food, now he can eat 10-12 oz of puree at a meal. He also didn't drink anything until 2 and now uses a straw cup to drink pediasure (about 20 oz per day). Just the other day he told me he wanted cookies because someone at school had a cookie.

    1. I am so encouraged by how your son is doing with eating. This blessed me tremendously to hear how long he went with not eating and then just started doing it. This motivated me to keep at it. Thank you so much.

  9. I'm so glad for this post. We're in feeding therapy for my son right now. He's been g tube fed since 4 mos and is 3 and 1/2 now. He's just getting to the point where he's not resistant to food in his mouth. We are doing vital stim, (a system that puts input into his muscles to strengthen his swallow.) We, too, use videos. I found some youtube child videos all about eating that he likes. We used to use the videos as a distraction but his therapist recently had us use the video as a reward when he takes a bite. This has helped tremendously. He uses his ipad speech app to make a choice, (he chooses between an empty spoon, or a couple different spoons with food on them). Giving him a choice has greatly increased his tasting of foods. He responds really well to choices. I also tell him how long the spoon will be in his mouth, such as I'm going to count to three. This calms him as well knowing how long he will have to endure the spoon with food on it. I am so hopeful for the day my son will be a mouth feeder! Such a process though, and its really hard to explain to others who aren't on this same journey. Wishing the best for everyone as they continue on their feeding journeys!

  10. I had the same issues with Malachi for so long and it's only in reading this that I realize how far we've come. (Malachi is 2.5 can now eat small amounts of soft mushy foods like beans, rice and chicken in addition to purees, yogurts and bottles of Pediasure/alternatives.)

    An easy blender-free way for making a real-food alterntaive to Carnation Instant Breakfast is to take 4-6 oz of almond/rice/soy/hemp/goat milk, add 1-2 tbsp coconut oil and a jar of their favorite (probably fruit) puree.

    I also wrote out a bunch of suggestions for a post I wrote a while back on things kids with this level of feeding can do:

    I think the biggest piece of advice I have is DON'T rush it. There are lots of foods that M won't even try now because (despite my own advice) I pushed him too hard and he gagged on them and now associates the gag with the food. BELIEVE your children when they say they don't like something and just move on and offer it again later.

  11. As a speech-language pathologist who has worked with many children with feeding issues, I know how parents struggle with the choices involved in giving their child the foods they like,the foods that promote muscle strength and sequencing and those foods that are nutritious. The parent has to find that comfortable balance. I often tell parents that if the child has no experience with chewing, they will not learn how to chew. It is also important to remember that food texture as well as taste, plays a huge role in the acceptance of a food. A child can not be expected to go from purees to sandwiches, though. There are many teeny steps that should be followed.. Also, the feeder must be aware of the choking or aspiration issues that are often concomitant with feeding sensitivities. I use Lori Overland's approach to feeding (, as well as the SOS approach, food chaining and sometimes behavioral approaches. I would suggest that this parent attend some conferences and work closely with a therapist she trusts.

  12. I just wanted to pop in--I haven't read others comments so this might be a repeat.
    My little brother (now 15) struggled with eating as a youngster too, to the point where his doctor felt it would be best for him to get a g-tube. He still has the g-tube. We syringe in a mixture of ensure (adult pedisure), baby cereal, and olive oil about 6 times a day now. He has spastic cp, is in a wheelchair, but he is 5'7 and 135 lbs. He is bigger than EVERYONE else with similar needs I've ever met. I've run into many parents who struggle with the idea of getting a gtube, because they think that once they get the tube it won't ever leave. Josh will most likely always have a gtube, he aspirates and vital stem hasn't worked for us, but the gtube has served to be such a stress relief. We can focus on so many other things because he does not have to spend hours a day eating. Finally, he was able to get all of that needed nutrition as he was developing and I think it's helped keep him healthy. I don't have any advice about getting your kids to eat, but I just wanted to share our story about the gtube, incase that is something your doctor recommends.

    In addition, if you're dealing with pureed foods you might look into pedisure (high nutrition milk) and a vita mix. We've had the same vita mix since I was in 2nd grade (I'm 22) and it's still going strong and works amazing!


Thanks for sharing!

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