Pharyngeal Dysphagia

• By Mdkohl21
• Reply 566530
• October 4, 2009 at 1:37 am
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Carmen,

my name is Chelle and I have a daughter with dysphagia, texture aversion, aspiration, GERD, hypersensitive gag reflex & mild delays in gross motor developemnt. I have been searching the internet looking for blogs of moms facing similar issues. Not much out there for parents of kids with feeding disorders. I'd be happy to share with the parent you support. My email is mdkohl@comcast.net

By the way , I am in Maryland.

• By NateAndTimsMom
• Reply 566592 · In reply to 566530 by Mdkohl21
• October 4, 2009 at 6:19 am
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I have two and a half year old twins with dysphagia, initially diagnosed at 14 months. As far as I know they have never aspirated, but they have silent penetration. My boys have been on honey thickener and finally moved to nectar last month (although not doing as well as I had hoped). My boys have low muscle tone in their mouths and go to feeding therapy to work on chewing. Thankfully we moved past texture aversions and GERD, but they are both still orally defensive AND have low registration (different areas of the face mouth). In other areas my boys (former 31 weekers) have severe language, and social delays, moderate self-help delays, and mild fine motor delays. They have both been diagnosed with PDD-NOS and have severe asthma.

One thing I have learned is that this is pretty darn rare in kids! Neither of my boys' SLPs (one for language and one for feeding) have any other kids with it. There is another boy at my boys' preschool with it, but I believe he has CP. Of course, friends really don't understand it--especially the need for feeding therapy. It can make this all lonely and difficult in finding support!

• By lchang4
• Reply 568049
• October 5, 2009 at 9:22 am
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What are the symptoms of dysphagia? How can you get the doctors to test for it?

• By beclyn
• Reply 568833
• October 5, 2009 at 5:33 pm
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NateandTimsMom - it's not as rare as you think! My FT son had it and we didn't even realize it. As part of his stuff he needed to do to see a pulmonologist for the first time he had the modified barium swallow at 10 months old. He never aspirated, thankfully, but once we thickened things to nectar consistency he did so much better. And as I look back to how my older daughter did with feeding, I realize that she probably had the same thing going on. With Colton, we kept him on his reflux meds and the thickener until 18 months, at which point we slowly weaned him off both meds at the same time.

For my kids, the most obvious sign was the fact that they had a very hard time with thin foods. Neither one could eat stage 1 baby foods, so we just thickened them with cereal early on, and didn't realize why this helped them until our son did the barium swallow. They did both occasionally choke while eating and nursing also.

• By beckhamsmom
• Reply 570457
• October 6, 2009 at 6:59 pm
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Our DS has both diagnoses of Dysphagia & Oropharyngeal. This was first diagnosed in 9/2008, so DS was 9 months actual / 6 months corrected. We too did the barium swallow study that showed one mild incident where DS paused in swallowing, but no aspirations. DS has CLD and has always been a slow feeder, rarely taking more than 4 ounces.

Since being released from the NICU (6-30-08) we have been attending feeding clinic, at first every other month and once he started solids, monthly. We have made slow but steady progress. Our feeding therapist is awesome and she has been critical to our son's continued growth and success.

Is the family near CHOP, i would think they would have an excellent NICU follow up clinic available?

• By Carmencita
• Reply 570494 · In reply to 570457 by beckhamsmom
• October 6, 2009 at 7:23 pm
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CHOP is not their primary clinic. They were going to Hershey Med. but now their doctor is at Washington Children's Hospital. I also gave her the info of the Carolina Pediatric Dysphagia clinic, Do you have any experience with this place? It would be a six or seven-hour drive but may be worth it if it is good. Thanks for replying to my message. Are you in Pennsylvania?

• By beckhamsmom
• Reply 570741
• October 6, 2009 at 11:15 pm
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Sorry I don't have experience with those clinics. We live out West, however I grew up in PA and have family there. Has the mom joined this site. What I have learned is that feeding issues are very prevalent among premature babies and there are so many moms with good advice. I will try and find in a different post some of the details of our feeding clinic experiences.

• By beckhamsmom
• Reply 570756
• October 6, 2009 at 11:23 pm
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I found the posting, here is a description of our feeding clinic experience thus far.

At the feeding clinic they do a variety of things:

1. Observe how I feed him & how he eats. She looks for what type of movement occurs in his mouth (like lateral movement of the tongue). Regarding how we feed him, she encourages us to follow the philosophy of Ellyn Satter. This is that we provide a consistent, predictable pattern of food choices, 5 x per day (the what, when, where of food) and he (DS) determines how much and if he eats. She does not want us getting into a power struggle or force feeding situation. Feedings are very messy and a whole body experience, so he is encouraged to use utensils, his fingers, etc to participate in the process. Fortunately, he does not have sensory issues, he is just a bit "defensive" around his mouth. I think that because feeding is a happy (no pressure from us) environment, he is now less defensive about foods, textures. We have (especially me) have had to make a conscious decision not to be stressed / worried about food or else he picks up on it right away! He eats 3 meals and 2 snacks per day (this started at about 12 months actual), each is followed by a nutrtitional drink (4 oz). He also takes a bottle before we go to bed, usually around midnight. He takes a 50/50 mixture of pediasure and breastmilk mixed to 27 cal. Since we still want him having bm, the nutrititionist likes us to give him 27 cal for the extra calories. He drinks between 16-20 oz, so he is still getting quite a bit of his calories through liquid form. This is giving us time to increase solid food calories while he is still able to maintain his growth. He is on a growth curve, 3rd-5th percentile for W & H - so he is small but has had consistent growth since he came home. In the past 2 months, he has had a bit of catch up growth height wise (he had not previously been on the charts for height). So for him the growth process has been slow but steady. He is currently just over 20 pounds and 29-29.5" long (at almost 19/16 months).

2. They (Feeding Therapist and Nutritionist) provide us with food options. They encourage us to fortify for extra calories so that we get a lot of calories per bite. We use butter, oils (canola has worked best for us), cream, whole milk, cheese in most of his foods. This also gives the food more flavor. Our feeding therapist has really helped us navigate finding successful foods - after purees as we moved to chunkier stuff we had some issues. She encouraged us to add more meltable foods because he loves that (the independence of it, using pincer grasp). So he ate and still eats a lot of these foods - there are baby versions (which we started with - puffs, cheese puffs by Gerber), but he prefers the flavorful adult versions, ie: pirates booty, snapea crisps, cheeto puffs (Trader Joes has a version). Cheerios came later as they tend more to crumble then melt. These are all really good practice for chewing and biting. Then we moved to thicker purees - like natural purees, refried beans, hummus, potatoes, etc. She does not encourage Stage 3 foods at all - she believes they are too complex (they consist of purees, liquid, chunky textures and sometimes solids / semi solids. Then we moved to diced, DS still struggles with "slippery ones" (ie wet diced peaches etc. He loves diced meat - breakfast sausage patty, meatball cut up, grilled cheese, hot dog (Whole Foods has some nitrite free ones), grilled chicken (ie a rottisiere chicken) etc. He also loves some freeze dried fruit, we started buying the Gerber ones, but now order directly from the web specific fruits - strawberries and raspberries especially (www.nutsonline.com - silly name but they have "Simply Strawberries" which DS LOVES!). How we have had more success with "slippery foods" is to make the pieces a bit larger - the therapist thinks that he may have a hard time controlling the smaller pieces, meaning they go back in his throat. So, now we have started giving him soft diced carrots (the ones from soup work well, plus they are flavorful) and have had some success. Fortunately he will still eat some baby food (stage 2) so that is how he gets his veggies consistently - we thicken with rice cereal and add butter. DS also loves coconut sorbet and vanilla ice cream so he gets one of these most days.

For us the progression that seemed to work was:

purees > thicker purees > chunkier purees (but still moist) / meltables > diced foods > learning to "bite" (take a bite off of a cheeto puff).

What we are still working on: adding new textures, slippery foods, not overstuffing food in mouth, weaning from bottle. DS loves to drink water from a sippy or open cup, but resistant to his milk in one. We are working on this, which is ok with his Neurodevelopmental ped. because of growth needs (he still needs the liquid part of his diet). Closer to 2 we will make the transition, right now we just offer his milk in a cup and then finish it in his bottle (after meals / snacks)

Sorry so long, I am sure there is more, but that's a start. BTW, DS has reflux that is pretty well controlled, is on Prilosec (compound).

• By Mdkohl21
• Reply 571451
• October 7, 2009 at 12:03 pm
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HI

My daughter is 17 month old and has dysphagia, dysphagia, texture aversion, aspiration, GERD, hypersensitive gag reflex & mild delays in gross motor development. She was diagnosed with dysphagia after her barium swallow study at 12 months. She is not ableto swallow anything that isn't a liquid of smooth puree. Her diet consists of milk (2-3 oz) with Carnation instant breakfast (to boost calories b/c she is also failure to thrive), yogurt and stage 1 & 2 baby food. (She does not eat all of these in one sitting; typically its about 1-2 oz of yogurt and maybe 1 oz of baby food then 2-3 oz of formula...much less then a typical 17 mo would consume.) The caveat to this is that if the liquids are too thin she will aspirate on them. We thicken her mik to nectar, any thicker and she will refuse it. We has had an endoscopy and bronchoscopy done and everything is normal except for very mild reflux. She ckokes, gags and sometimes vomit throughout meals. We are in feeding therapy at Mt. Washington Pediatric Hospital. We attend once a week. We are currently working on increasing the volume of food she takes in to promote weigh gain. She is under 3rd % (but no longer zero %) and at risk for a feeding tube. My daughter refuses most foods due to texture, she cannot drink from a sippy cup. In therapy we place a toy on her tray an offer a spoonful of food, if she takes it then she can contineu to play with the toy. If she refuses or spits it out we remove the food and toy; count 10 seconds and reoffer. This has worked very well for her, she has taken to the protocol and knows the routine. We have seen a weight gain for the past 3 months, only 3-6 oz but we'll take it. This technique can also be used with a preferred tv show....take a bite & watch tv, refuse and the tv gets turned off. Every meal is difficult, and it breaks my heart to see her go through this. Other people just don't understand.

Maybe some of you can relate, I hope this helps.

• By Youngmotherof5
• Reply 696598
• January 11, 2010 at 10:55 pm
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My youngest son is now 19 months old. He was diagnosed 6 months ago with Pharangeal Dysphagia. He was diagnosed after having a modified barium swallow. He is unable to eat alot of solid foods that toddlers his age can eat. We have him in Occupational therapy, as well as Physical Therapy, and Speech Therapy. He is doing well, and gaining weight appropriately. Though I worry alot due to him not being able to eat many solids. But his food list increases every week. He also has a sensitivity to textures, both in his mouth, and with his hands and skin. His skin is very sensitive and he doesn't like certain things, example : cold play doh, anything gooey, or slimy, anything cold. He is on a brushing program on his skin that helps desensitize his skin, and another brushing program that helps the nerves in his mouth register if his mouth is overfull. He is drinking water out of a sippy cup, but he is still on formula, to meet his caloric needs, and he only will take that in his bottle. I finally got him off of the pacifier, but he still only sleeps maybe 3- 4 hours a night. We just take one day at a time, and ask that the Lord's hand will be in this. That he can outgrow this condition.