He can’t swallow.

My baby can hardly swallow and no one can tell me what is the matter. We are losing ground here with feeding and while I am thankful that we have alternate-means to administer nutrition, we didn’t expect to become completely dependent on it.

Corrigan has had strep throat twice since December. Both times he had no signs of strep upon physical examination but the swabs came back positive. He is limited in his ability to tell us if something hurts, we have to watch him closely for limping or pained expressions, and in this case-furrowed eyebrows and hard gulps with every bite of food. He has had two endoscopies and there were no issues with his throat. We have had his tonsils checked as well, they were enlarged during his three week cough/cold, and two doctors have told me that while they are a little big, they are not worrisome. We are trying to get an appointment with an ENT in Baltimore.

He hasn’t been able to swallow well for months. Probably close to three months now and it seems to be getting worse. Hopkins has scheduled a swallow study but the only Speech professional that works with children is so overbooked that we can’t see her until mid-Spring. In the meantime, we are now down to only 3 grams of protein by mouth (the rest of his needs are now through his feeding tube) and most days I resort to giving him drinkable yogurts to make our quota. Even strawberries and bananas cause him difficulty with swallowing.

It is heartbreaking to watch him try to eat. He usually tries two bites and then is finished. He loves french fries and lately I have found them chewed, and then spit into a bowl on a table in my living room. He wants to eat them, this doesn’t seem to be an oral aversion but something is changing and getting worse. It looks painful for him, just as if you or I had a terrible sore throat, but again-we have had him examined and nothing seems amiss.

He has no problems with drinking as long as it is from a straw.

The video below is Corrigan chewing a 1.5 inch piece of mushy waffle fry from Chic-fil-a. He had chewed severeal times before I could get the camera to start recording. See how he struggles to swallow? This was his second bite, the first looked so hard for him that I nearly cried. This one went down a bit easier than the first.

Any ideas? Suggestions?

If we don’t figure this out soon, we will be relying on the tube 100% and this is not what we wanted when we had it put in nearly two years ago. His school has mentioned extra therapy to focus on helping him more with self-feeding but have asked us to make certain there are no medical issues before they start.

9 thoughts on “He can’t swallow.

  1. http://www.new-vis.com/fym/papers/p-feed12.htm

    This link says that he could develop problems swallowing. A lot of it seems to be directed towards infants though. It does have some contact info at the end of the article, I don’t know if they may be able to help. I was thinking it could be because he doesn’t use this reflex as much he may be losing it. Comparatively, we swallow a ton more than he does and it would keep the muscles toned, where maybe his aren’t as toned as they should be. Just an uneducated guess though. I hope and pray you find the answers you really need and would love to have.

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  2. Thanks Rachelle, I appreciate it. We were told by a doctor, at Children’s, that the act of swallowing is a pretty tricky maneuver guided by the nervous system. If the damage in his brain (and we need to get in there and look I suppose) is in that region, we may never fix this problem. I understand not using it, therefore not being “mature” and strong etc…but the really hard swallowing, the deep gulps, the food getting stuck and he retches and throws up, the painful facial expressions, these are new which makes me think the condition is not only getting worse, but causing him pain now, not just inconvenience? I don’t know. The swallow study will tell us so much more, but at this rate, he won’t be taking anything by mouth by his 4th birthday. Which sucks, since his interest in food is higher than it EVER has been, he talks about it (in his language) he shows me pictures, he looks and smells EVERYTHING on our plates, he seems interested but unable. Ugh.

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  3. Mindy, dear, what a brave little guy you have. I would be less than honest if I acted like I had any advice to give. This is something entirely new to me. My heart aches for the poor little guy, and for you.

    Have you tried using a vaporizer for a while that might loosen up his throat? Maybe the atmosphere has been too dry.

    George

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  4. I have a student in my classroom who also doesn’t swallow, not even her saliva, although her swallow study says there are no issues. It looks to me like there is either a coordination, muscular issue going on there or perhaps those tonsils are more of a problem then the doctors think they are. Is there any reason why they can’t take them out anyways? What may be uncomfortable or painful to him may not register in that same capacity for other people. I don’t see what harm there would be in taking out those tonsils.

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  5. If it were me, I wouldn’t wait. I would find someone outside of the hospital or another hospital to get the therapy he needs. In the Chicago area, Easter Seals provided fantastic therapy for both of my boys when they were little. My youngest was in feeding therapy for about 4 years. His issues were attributable to his syndrome (lack of hunger, cranio-facial abnormalities, low muscle tone, and feeding aversion). But, the less he ate volitionally (by mouth) – the more we relied on the g-tube. I have coached all families with RSS children (my son’s diagnosis) that no matter what they do when they have a g-tube fed kid – to always give them something to “chew”. Cheerios (which are great for chewing and melt so-to-speak so easier for swallowing), crackers, drinking with a straw, apple sauce, pudding, etc. If it were me, and he is having that much difficulty with a chicken nugget – I wouldn’t feed it to him. I would be concerned of his developing an aversion to eating because of the difficulty. It’s the ‘ole – if you keep doing something that you dislike or is uncomfortable – eventually, you will quit doing it. Another thought is demanding your physician (pediatrician or other healthcare specialists – such as gastroenterologist) to get you in sooner. My son used to have 27 mandatory physician appointments per year. That didn’t include hospital stays and regular check-ups or sick calls. I have learned to switch physicians if the relationship isn’t working or my son wasn’t getting the services he needed. I consult with families on how to manage their relationships with their physicians….. :).
    I hope I have been of help to you. Please feel free to chat any time! I “feel your pain”. When your child is unable to do one of the most natural tasks that God has given us – it is very frustrating and for me – was very scary. Lot’s of hugs to you.

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  6. Anyway you can get in for the swallow study sooner? I think an ENT consult is definitely in order. I agree that it does look painful for him. It looks like he really has to focus and seems like a lot of work for him to get that bite down. But you say he drinks the formula okay? It seems like maybe that does not hurt, but that something with texture is bothering him. And it is a catch-22 – it is a blessing that our kids have their g-tubes, but it means that doctors don’t push for the tests as quickly. They don’t fit us in for appointments because they can get the nutrition needed. But if a kid without a g-tube suddenly was showing these signs of discomfort and was refusing food, they would be getting answers much more quickly. Poor Corr! I hope they can figure it out so he can be more comfortable!

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  7. Thanks for all of the comments and advice! I sent the video to his dietitian and doctor. I hope that if they can see how he is struggling, maybe that will help with getting the referrals and things sped up. I was told that the Hopkins childrens has only one child-specialized administrator of the swallow study and that she is scheduled way out due to increase in referrals for this service.

    I think that I can get into an ENT locally sooner than one through Hopkins. The thing is that if there is an issue, his team wants any surgeries done in Baltimore, under their supervision, which would mean needing to see the ENT in Baltimore anyway. Also, they have to way the pros and cons of any kind of anesthesia for Corrigan. We just need a better look into his throat to see which way to go.

    I appreciate all of you!

    mindy~

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  8. Is he on any new meds that might be causing a dry mouth? Is he choking any on liquids or seeming weaker overall or more tired than usual? Is it just with certain foods? Praying that you get in quick and get answers you need. It could be so many different things. ((HUGS))

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