View Full Version : Dysphagia?


Minnie
11-13-2006, 10:00 PM
My son has dysphagia. As an infant he had a really hard time with liquids. I thickened his feeds and it helped tremendously. As he grew he started to "out grow" it and was able to handle water by 18 months (after starting a PPI for the first time). As liquids became less of a problem solids became more difficult for him. Right now he is having great trouble with both :(
He is obviously in some pain or discomfort when he swallows. He grimaces with every swallow and chokes (stops breathing and the whole bit) often. He uses liquids to wash it down once he has fought the bolus down (usually it goes down. there's only been a few times I had to help. a handful of times he worked it back out, and he seemed more comfortable when that happened) and can breath again. Then he coughs and sneezes after drinking, and starts the process over again. Needless to say his intake lately has been minimal. Eventually he gives up and just holds the food/liquid in his mouth or chews for a minute and then spits it out. It doesn't matter what the texture is. Even purees are difficult for him. To me as a viewer it looks as though everything is getting stuck. What's really strange is he eventually stops chewing too, and makes his swallow even worse. It's almost as though he teaches himself how to swallow certain things whole during these spells, and the foods he already knows how to swallow whole I have to avoid. He wants to eat, he even asks for foods, but then it goes badly, and he gives up.

Now the crazy part.
His dysphagia comes and goes. His last good eating spell lasted over 3 months (this is or longest good spell EVER:)). He ate perfectly, although there are still some foods he has yet to master possibly out of fear (lot's of choking) he won't even try them. Peanut butter and other thick sticky puree type textures are untouched or spit out immediately. and things like stage 3 and soups, casseroles, he's not very good at either, but he tries.

During his dyphagia spells he smells like rotten food (sour like a garbage disposal that needs to be cleaned), has tummy troubles, gets dehydrated, and constipated. This time he was also able to tell me (because he's older) his mouth hurt, and his chest felt hard.

Every time this happens I take him to see a doc to make sure he doesn't have strep or something viral going on, and he never does. Eventually he will stop eating like he is right now, and then slowly start back up again like nothing ever happened. I'm telling you in a week or so he'll be eating like a champ again. It's the weirdest thing.

My question is can dysphagia come and go? Would Eric benefit from feeding therapy or is this strictly a medical thing that needs to be uncovered? I mean he has the skills. It's almost as though he chooses not to do it right, can't stop himself, and then suffers the consequences. After a few days on feeding strike he's back to eating "normally" again.

pedi-ot
11-19-2006, 09:11 PM
Hi Minnie:

I must have "sighed" 4 or 5 times reading through your post. I am seeing several red flags with Eric's history that tell me he is in need of immediate attention. He has laryngomalacia, or softening of the larynx, ongoing reflux that was not treated until 18 months of age with a PPI (this will make him more hypersensitive when swallowing various food textures), dysphagia, or weakness of the pharyngeal muscles, and he is FTT. If you do not get him medical attention quickly, he could possibly need a g-tube and Nissen fundoplication to help with weight gain and reflux if he stops eating and gaining weight. This is NOT a good treatment option and should be avoided if at all possible.

I would HIGHLY recommend a modified barium swallow study ASAP. Yes,dysphagia can worsen for various reasons. Sometimes it is because of a viral illness such as RSV or sometimes the tonsils can become enlarged and get in the way of the swallow. If the MBS study is normal, I would ask your pediatrician to look at Eric's tonsils and see if an ENT referral would be a good idea. If the MBS study is abnormal you have 2 options. You can continue to thicken liquids and start therapy with an experienced feeding therapist. The other option is to look into VitalStim Therapy. It is electrical stimulation for the swallowing muscles and a quick fix for dyspahgia. You must find a therapist who is certified in it. I have had several patients who have had success with VitalStim. It is a 6 week course of e-stim 3-5 times a week for 30- 60 minutes. Go to www.Vitalstim.com (http://www.Vitalstim.com) for more information. Please write back with any questions.

Robynne

Minnie
11-20-2006, 07:18 AM
"sometimes the tonsils can become enlarged and get in the way of the swallow. If the MBS study is normal, I would ask your pediatrician to look at Eric's tonsils and see if an ENT referral would be a good idea."

We took Eric to and ENT last week and he said Eric's tonsils are huge! He said that his adenoids are also most likely enlarged as well, but didn't look because Eric is so obviously orally sensitive. He said that he thought that this was Eric's problem all along...sigh... I don't completely buy it, (enlarged tonsils since birth, and no one said anything?!) but I have lot's of fun thinking that it could be true. LOL

Here's a thread about our appointment that I'd like you to read (I posted several times within the thread, with more info). It's long but I said everything that I would like to say to you right now.
If you can get through it all
http://www.infantrefluxdisease.com/forums/showthread.php?t=21864&highlight=surprize

We have another appointment with the ENT on the 29th of November and I have a list of questions and things I want to discuss with him. If there is anything that you feel needs to be on my list, I sure would appreciate your input.

Thank you so much

pedi-ot
11-20-2006, 10:18 AM
Hi Minnie:

I just read the post you asked me to. ALWAYS go with your "Mama Instincts" because they are usually right. As I mentioned in the last post, I think it is crucial that you get Eric in for a MBS study ASAP. A MBS study is much less invasive than a tonsillectomy! Besides, you might find out that he is aspirating and it is the reflux that is causing the tonsils to become enlarged. It used to be routine to take out the tonsils, but now it is not a standard surgery. Tonsils usually come out if a child has 4-5 episodes of strep a year or if they are affecting the patient's swallow. In Eric's case, you do have to consider that he hasn't had a strep episode and you have to protect his immune system (Iga). The ENT sounds somewhat hesitant to perform a T/A.

I would love to know the results of the MBS study. The other concern I have would be properly addressing Eric's reflux. If his tonsils are enlarged because of the reflux and you are smelling a foul odor as I believe you had mentioned, I would ask Eric's GI about a motility agent. The other option may be as simple as thickening liquids, as a thickener will help keep the liquids down.

Has anyone taught you how to increase Eric's daily calories to assist with the FTT? Are you working with a dietitian? Please write back.

Robynne

Minnie
11-20-2006, 11:03 AM
"Has anyone taught you how to increase Eric's daily calories to assist with the FTT? Are you working with a dietitian?"

The GI put him on a high fat diet the last time he saw him. "We have to fatten him up!" Gosh! I never even thought of that. (Eye roll) LOL

He told me to add 1/2 to 1 tsp of butter to his foods, and switch to whole milk (lactose free, because Eric is now lactose intol) cook things in oil, lot's of ice cream and things with high fat content, bacon, sausage, etc. I told him
that high fat milk and other high fat foods made him reflux more and effected his breathing a lot, but he said "The PPI is keeping him comfortable. Go ahead and let him reflux, his weight is more important right now."
This was the ONLY time we got offered any help with feeding besides "I think he just needs to eat more." and lame advise that would work if the child didn't have problems.

Well at first all was well. Eric LOVED his new diet and being able to have his favorite lactose free ice cream any time he wanted was an Eric dream come true. He WAS refluxing more almost immediately, but when he would vomit into his mouth he would just say "Ummm it's good." and didn't seem bothered by it at all. After 2 weeks on the diet he lost 1 pound and then his painful swallow came back. :(
and here we are.
I took him off the stupid GERD inducing diet last week, and he's starting to drink more without difficulty, but solids are still a problem.

"If his tonsils are enlarged because of the reflux and you are smelling a foul odor as I believe you had mentioned, I would ask Eric's GI about a motility agent"

I brought up the smell to the ENT and he said that his food could be getting lodged into his tonsils and causing the smell. Of course Eric didn't smell the day of the appointment, so he couldn't see for himself.

I mentioned motility, and he asked if an emptying study had been done. nope.
I swear all these docs just pass the buck to someone else, and just comment on what should have been done, without taking any action themselves. It's so frustrating.

Thank you so much for your help. I'm pushing for that swallow study for sure.

pedi-ot
11-22-2006, 11:51 PM
Sorry, I give my opinion on the little information I get in a thread and never know what my parents have tried or who they have worked with unless I ask.

You are correct about passing the buck, however, I believe we have several issues going on with Eric. Your ENT is correct in that you have to refer back to the GI regarding delayed gastric emptying. Have you ever tried Peri Actin to assist with stimulating Eric's appetite? I have seen it work well with many patients.

Start with the MBS sudy and please tell me about the results. I would also ask the GI about DGE and an appetite stimulant. It sounds like Eric has a terrific advocate. Keep demanding answers. Keep me posted and have a Happy Thanksgiving!

Robynne