Downs Syndrome food trauma?

September 10, 2014 4:25 AM

A friend of mine is looking for advice on how to get her Downs Syndrome son to eat after an incident of near choking a few months ago.

A friend's son (who is Downs) recently choked on a meatball he was eating. Someone was able to perform the Heimlich and get it dislodged, but it has scarred him. He has now lost 25 lbs. He's down from a size 42" pant to a 30-32". He won't eat anything he thinks has 'lumps' in it. To him, applesauce has lumps. They've tried everything. She's a PT and has plenty of experience with him (as does her daughter). They have an upcoming meeting with a psychologist and are in the process of getting him into a group home (he was living by himself).

This has really torn her up and caused her many sleepless nights and has affected her work. He can be stubborn and pig headed sometimes and this is one of them.

Any ideas?

posted by littleredwagon to Human Relations (18 answers total)

I don't have a suggestion for helping him not worry about "lumps" anymore so that he can get back to eating solid food, but what about something like protein shakes to get him the food he needs? There are lots of protein powders/meal replacement powders out there that can mix up perfectly smooth and that taste good. Use something like a magic bullet and you're golden. Maybe they could pour the protein shake through a strainer in front of him to prove it has no lumps. In time that could potentially be a gateway to work up to fruit smoothies and then sort of build from there.

Speaking as someone who had a choking incident (had a large gumball lodged in my throat, my friends thought I was pretending to choke to be funny and didn't help, had to sort of Heimlich myself to get it out...) I can say first hand it is seriously scary. Mine happened when I was in my early teens and I have never forgotten it. I really feel for the guy. :(
posted by PuppetMcSockerson at 4:41 AM on September 10, 2014

I feel for him- I avoided cantaloupe for 10 years because I choked on a piece. It took me eating small bites slowly to get over my aversion.

Have you tried offering him cocktail forks to eat with? If you explain that he choked by eating a bite that was a bit too big, perhaps he could focus his attention on eating bites that are very small. If that doesn't work, maybe try getting an wild, super cool, spoon, fork and plate set and telling him that it is an anti-choking, medical device.
posted by myselfasme at 4:48 AM on September 10, 2014

Argh, what a horrible experience for him.

What about cutting the food into very, very small bites and/or washing every very small bite down with water?
posted by roomthreeseventeen at 4:59 AM on September 10, 2014

In the UK at least, the people who normally deal with swallowing problems like this are speech therapists.
posted by emilyw at 5:00 AM on September 10, 2014

I also feel for him - I am still afraid of Chinese beef and broccoli after a choking incident from my childhood. I eat it verrrryyy slowly and in tiny bites.

I think the suggestions of small bites, with little utensils, is great. He may be comforted if he is reminded that his family knows the Heimlich maneuver and is ready to perform it if necessary, too. And short term, protein shakes or other high-calorie liquid "foods" all the way. Would he like smoothies?

I'll also add that compassion is going to go much farther with him than frustration. Accusing him of being "pig headed" because he is afraid of choking is not helpful. I encourage everyone involved to take his concerns seriously and to help him in a kind, respectful manner.
posted by schroedingersgirl at 5:21 AM on September 10, 2014

I was in a tad of a rush this am, so let me add:

- She has been able to get him to do protein shakes for the most part.'vanilla icecream, plain yogurt, drinks (protein, smoothies, vitamin supplements.' was her response.

- This has also affected his ability to take his medicine in pill form too. She recently got a pill crusher that is helping, but it's still an ongoing issue...
posted by littleredwagon at 5:35 AM on September 10, 2014

Her daughter is a non-practicing speech therapist and has been a great help with this. Unfortunately, I think he's now feeling ganged up on by the two, so that's an underlying issue too. THANK YOU FOR ALL YOUR SUGGESTIONS!!!! Keep 'em coming! :-)
posted by littleredwagon at 5:38 AM on September 10, 2014

Speech pathologist grad student here.

He may want a re-evaluation of his swallowing mechanisms to see if he needs an adjustment to his diet texture. In addition speech therapists work with those with feeding difficulties and they can give him strategies to help. OTs also do this but they are more on the delivery to mouth part while speech therapists are more trained on what happens inside the mouth, roughly speaking.

You may also want to consider tube feeding if you can't get him to gain weight eventually. It doesn't have to be a pernament solution but something to think about if he keeps losing weight at that pace.
posted by Aranquis at 5:39 AM on September 10, 2014

If he is feeling ganged up on try to find ways to make him feel empowered.

Would you be able to get him some sort of guide he can use to compare a bit of food against how big his throat is? I'm thinking like at the post office how they have those slots, and if the thing you are mailing can fit in THIS one then you can mail it THIS way. It doesn't have to be perfect or terribly accurate, but having some sort of check in place may do a lot to make him feel better. If the bite of food it smaller than his guide then he can't choke on it. Consider having some other sort of device that tests how mushable/squishy a food is. If the food can be swished easily by the device/technique then his esophagus can squish it too, no choking risk.

Also, does he know about the esophagus, how it works (in a broad sense)? Can you give him a high level explanation of how the esophagus works, how it is stretchy, how it can kind of push food along to make it down in to his stomach, etc. Maybe explain how it is pretty strong and can mush up softer foods. Maybe some sort of science experiment to show how swallowing works? Actual scientific terms don't need to be used. "Throat" or "Swallow tube" may be easier to grasp than "Esophagus". Explain to him how he choked, and what his body did to try to get it out. Explain that the scary panic feeling happened so that he knew he had to get help and would make other people see he needed help. Tell him about the choking hand signal (both hands to the throat) that people use to let everyone know they need help. In some cases some knowledge can be empowering and make things feel less scary. Take the mystery away.

Also, what about offering to take first aid? Get someone trained in first aid and in the use of the Heimlich. Let him know that this specific person (or people) went to school to learn exactly what to do if it ever happened. Make him feel like there are people there to help him/save him. Maybe he can learn too?


Finally, good call on the pill crusher. Just double check with the pharmacist that the pills can be crushed. I personally am on some medications that are slow-release type deals and can not be split or crushed.
posted by PuppetMcSockerson at 5:52 AM on September 10, 2014

re. my device suggestion for the size and mushiness of a food, also show him how the meatball he choked on would NOT pass either of those tests. Show him how if he had cut up the meatball in to smaller chunks it would have passed the size test. And make sure he understands that if a food doesn't need to always pass both tests.
posted by PuppetMcSockerson at 5:59 AM on September 10, 2014

In the interest of empowering him, supply him with a large mesh strainer and let him strain the food himself, thus confirming that there are no lumps and nobody is trying to sneak lumps in.

Then give him things like pureed soups (chicken soup with veggies pureed in. tomato soup. split pea soup. bean soup. lentil soup.) All of these can have cream or sour cream added to bulk up the calories. Try green smoothies with greek yogurt added in (Fage has the highest protein). This will at least get some variety, vegetables, and protein into his diet. Try adding peanut butter to some of his smoothies as well.

Let him strain all of these things. Maybe let him drink them from a straw. If it goes well, you can sloooowly increase the thickness, add a little bit of texture (very finely minced meats and veggies), et cetera.
posted by telepanda at 6:17 AM on September 10, 2014

Out of the box thinking - if he needs to feel empowered, maybe he can smash his food.

Maybe make him a meatball and let him smash it? So he can feel bigger than the meatball.
He doesn't have to eat it. Just smash it.

Hugs to this little guy, what a scary experience.
posted by St. Peepsburg at 6:48 AM on September 10, 2014

St. Peepsburg, I think this is a grown man who was previously living on his own.

Baby food? There are all kinds of melt-in-your-mouth, non-chokable savory options for babies these days; maybe that would help him get back in the swing of eating "dinner"-type foods.
posted by Cygnet at 7:54 AM on September 10, 2014

Would the family be able to take an adult CPR/First Aid class? The Red Cross teaches a unit on how to care for someone who's choking (including yourself) as part of theirs. Even if you ultimately can't complete the skills well enough to become certified, you're still encouraged to complete the class.

If he feels that he and his family will know what to do if he *does* start choking, maybe he'll feel more able to eat solid food with them, and take his pills in front of them, and eventually by himself?
posted by rue72 at 8:37 AM on September 10, 2014

It's great they're working with a psychologist who can perhaps address the anxiety side of this. As others have said, a speech/langauge evauation focused on swallowing would also be helpful. Ideally, he'd be seen in a feeding clinic which is a multidisciplinary clinic (SLP, psychology, nutrition, MDs, etc.) who would all work together to develop a plan to address any underlying medical issues, ensure he is getting enough nutrition in his diet and who can then work on a plan to gradually reintroduce foods that are causing him anxiety. These clinics are often affiliated with pediatric hospitals and staff there may be able to point you toward resources for young adults.
posted by goggie at 1:16 PM on September 10, 2014

I'm a speech and language therapist specialising in swallowing. Anyone can have a choking incident, and it's a common start to a food phobia. If this was a one-off he's probably best with a psychologist so it's great that that's on the way.

In the meantime, there is lots of guidance out there about preparing a pureed diet (which is completely smooth) because it's used by lots of people with dysphagia. A bit of googling should get your lots of tips for preparing a more balanced diet than has currently been suggested.

Good luck!
posted by kadia_a at 1:57 PM on September 10, 2014

This would be pricey and I have no idea where you would look for it, but kids with autism and sometimes even kids with cystic fibrosis become so averse to eating that they get put in therapy programs (possibly in-patient programs) to help them get over it where they are walked through holding their spoon, desensitization, etc. With cystic fibrosis, sometimes the kid has been on a feeding tube their entire life and refuses anything by mouth and has to be trained out of it. So, also, if he keeps losing weight, a feeding tube is an option -- not one I would want but it is an option.

I don't know how bright he is but I would be inclined to sit him down and explain that if he cannot get enough calories into him to regain the weight, a feeding tube is highly likely to happen and that is not something he likely desires. My youngest son was put on an IV once when he was 7 or 8 and when he had Winter Vomiting a few years later, I was able to get him to drink enough water and eat enough crackers to stay out of the ER by reminding him that if he ended up sufficiently dehydrated, I would have to take him to the ER and get him an IV.

However, my mother put a bunch of weight on my dad when he had cancer by using shakes and smoothies that were homemade. On good days, she made them with ice cream and milk and frozen fruit. On bad days, ice and fruit juice and frozen fruit. (IIRC.) So maybe really good tasting, healthy, wholesome shakes (and not just Ensure or whatever) would help put the weight back on while this other stuff gets sorted out.

FWIW, my oldest son has both autism and cystic fibrosis and did not wind up with a neurotic relationship to food because I took a strong position in terms of respecting his boundaries and making it possible for him to CHOOSE to eat. I made foods available that were healthy enough in my eyes and appealing enough in his and then let him have a lot of control over when and how much he ate. When I moved back home with my sons during my divorce, a similar approach helped break the battle for control that was going on with my father who had Alzheimer's and a lot of special dietary needs and restrictions.

My father would go open up hot pots of food even though he was terrible in the kitchen and neurologically impaired and you could see him contemplating whether or not to put his fingers into the boiling water to fish something out. I was very concerned that he would get himself hurt. Looking back on it, my sons and I think he was low-grade starving, in part because of the battle for control over his diet and in part for other reasons (and this is not accusing anyone of anything -- he was old and difficult as hell to deal with and we think no one realized this, but my sons and I have dealt with serious challenges in the eating department and were prepared to deal with it differently).

One day, my father asked my son for some of the food he was cooking. And my son promised him part of it. And my father kept nagging him, because his memory was shot and he didn't trust anyone. So my son gave him a bowl and promised to give him some food when it was done cooking. After getting the bowl, it was like tangible evidence of the promise and my dad sat down and stopped nagging my son. When the food was done cooking, my son made sure to serve my father first to prove to him that he would keep his word. After that, he trusted us more. Over time, we just got in the habit of leaving food at his "place" at the table and letting him discover it and decide for himself if he wanted it or not. It returned some control to him while increasing his access to good quality meals. He became less difficult to deal with.

My mother began implementing some of our practices (plus some suggestions I made to her), which reduced how much she fought with him and that helped make him easier to deal with for her. He couldn't consciously remember specific events but he did know that he had a lot of negative feelings towards people around him because of constantly fighting with them. We helped my mom find ways to take care of him without constantly fighting with him and that made him feel less negative towards her and made him easier to work with. Emotion is a kind of memory and it gets relied upon more as other faculties degrade.

So if there is a way to make acceptable foods more available without other people trying to control what he does, in a way that returns some of the control to him, that may help him stop digging in his heels defensively.
posted by Michele in California at 2:36 PM on September 10, 2014

Thanks for all the info!!! My friend appreciates it!
posted by littleredwagon at 4:01 PM on September 10, 2014