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Old 01-07-2012, 06:49 PM   #1
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difficulty swallowing? Updated after our apt today

update- we had sebastian evaluated today, and the doctor and speech therapist said he has a sensory issue, which is why he wont swallow anything other bm. he is getting evaluated by a occupational therapist on the 27th to assess the physical developmental delays he is experiencing too. i feel so relieved to know what is going on, but at the same time am wondering what to expect now. i havent made it to the library to pick up the recommended books, but that will happen this week. thanks for all yall's posts!



my youngest is now 10 months old. im not sure if this is related at all, but he was born premature at 36 weeks with a hole in his heart, heart murmur and difficulty breathing. the murmur and hole in his heart have since been resolved, but he still has breathing difficulties breathing and has some physical development delays as well. he is exclusively breastfed, and whenever he is offered solids, even liquidy solids such as stage 1 baby foods, he either pushes it out of his mouth or gags and vomits- anything thicker than his breast milk he just cant swallow. he has an appt. with a physical therapist next week to assess/ diagnose what is going on, and our ped. mentioned going for a swallow test too. i am getting really nervous about his appt next week because im not sure what they are going to do. has anyone had a baby with difficulty swallowing? what kind of therapy did they do to correct it? and i know all situations are different, but what was the cause of the swallowing difficulties?

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Old 01-07-2012, 06:58 PM   #2
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DFS didnt swallow til recently. He has a gj tube. You will want to call EI and have him evaluated. They will probably send an OT and a ST. The earlier you start feeding therapy, the better. DFS sees OT, ST, and feeding therapists weekly. A swallow study is a must, and probably an upper GI study. Good luck!

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ETA: We started therapy at 4 months, and at almost 3, he is finally swallowing cheese puff balls sometimes, and ice cream. Feeding therapy is a LOOOOONNNNNGGGG slow process. You have to find a team you are comfortable with because you will be working with them most likely for years. If you don't love your people when you first meet them, it is worth looking for someone else.

A swallow study is where they put barium in breastmilk/formula and do essentially a video x-ray of your child swallowing (or not swallowing as the case may be) so they can watch where the fluid goes. It checks to see if the child is aspirating, can detect some refluxing, and sees where stuff is moving.

An upper GI is like a swallow study, but it watches all the way to the stomach.

We've done an endoscopy, where they scope the esophagus, and just recently, a throat scope.

DFS won't swallow, and no one knows why. He never ate well, and has horrible reflux (cobble stoning of the throat). He puked CONSTANTLY (at least 10+ times a day). At 4 months, when the suck reflux goes away, he stopped eating entirely. He was put on an NG. We had that til he was about 7 months old, when they put in a G tube because they said the puking was being aggrivated by the NG. NGs are a nightmare anyway. G tubes are SOOO much more humane. So, then he had the G, and continued to puke. We did OT, PT (for pervasive muscle tone issues), ST, and he had an outpatient feeding therapist from the children's hospital weekly. If you put anything with a flavor in his mouth, he gagged. Toys, he was fine with. But the instant there was a flavor, he was a mess. We tried and tried to get him on bolus G feeds (being able to feed 3-4 ounces at a time, and then come off the pump) and despite 10 hospitalizations, he never was able to do it. At 16 months old, we took him to feeding boot camp (a week-long, inpatient feeding program). After 2 days, they determined that until the puking stopped, he would never eat. They put in a J tube, which was a lifesaver for all of us. He would still wretch, but nothing would come up. We put a drain bag on the stomach, so there was little fluid in it. At 2 years old, we were thrilled when he put a lollipop in his mouth himself and licked it.

Now, he will put ANYTHING in his mouth. He just won't swallow it. He spits it all back out. But, we have turned the corner in the past 2 months, and he started swallowing a couple things--ice cream being the very first food he wanted to swallow. He loves diet coke, too.

One thing about feeding therapy--you lose all your perceptions about "healthy" eating. I will give him whatever he will put in his mouth and swallow. The first thing we worked with were organic Cheetos. They taste good, melt in their mouths so it is less of a choking hazard, and the kids can hold them easily and feed themselves. Now, a typical meal (and every meal is a therapy session) consists of goldfish, cheese puffs, pudding, ice cream, chips, and a tiny taste of whatever the rest of us are having for the meal.

I would google Food Aversion. Food averse kids see food differently than normal kids. To DFS, the table was an evil place, and he became agitated. He is slowly getting over it now, but he would never have come up to me and said "Mommy, I want a cookie." It is hard to get his preschool teachers to understand that you can't bribe him with junk food. He doesn't want it. He will tolerate it for praise, but as soon as he can possibly get down from the table, he will throw his plate on the floor and try to bust out of his booster.

Once you get a little further down the line, there is a great philosophy called Food Chaining that really has helped us a lot. I also suggest you read "The Out of Sync Child" because a lot of feeding issues are really symptoms of bigger sensory issues. If you get the sensory issues under control, it can help if you are having sensory triggered feeding issues.

Good luck mama! I hope you get answers soon!
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Old 01-07-2012, 07:10 PM   #3
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Re: difficulty swallowing?

I agree with previous post.
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Old 01-07-2012, 07:56 PM   #4
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A swallow study is basically a moving x ray to see what happens. An OT or SLP would do therapy, and can look very different depending on the specific issue. It needs to be addressed. If it is truly a swallowing issue it will not go away with intervention, the earlier the better. Good luck!
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Old 01-07-2012, 09:53 PM   #5
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Re: difficulty swallowing?

I added a bunch of stuff to my original post now that I am at a computer and off my phone. Feel free to PM me if you have any questions or need support. It is hard going through this and no knowing anyone else with these issues. Luckily, I met two moms at the children's hospital that I have kept in touch with, and that made all the difference for me.
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Old 01-08-2012, 08:13 AM   #6
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Re: difficulty swallowing?

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Originally Posted by luvsviola View Post
DFS didnt swallow til recently. He has a gj tube. You will want to call EI and have him evaluated. They will probably send an OT and a ST. The earlier you start feeding therapy, the better. DFS sees OT, ST, and feeding therapists weekly. A swallow study is a must, and probably an upper GI study. Good luck!

Sent from my iPhone--it's smarter than I am

*******************************************

Now that I am at a computer...


ETA: We started therapy at 4 months, and at almost 3, he is finally swallowing cheese puff balls sometimes, and ice cream. Feeding therapy is a LOOOOONNNNNGGGG slow process. You have to find a team you are comfortable with because you will be working with them most likely for years. If you don't love your people when you first meet them, it is worth looking for someone else.

A swallow study is where they put barium in breastmilk/formula and do essentially a video x-ray of your child swallowing (or not swallowing as the case may be) so they can watch where the fluid goes. It checks to see if the child is aspirating, can detect some refluxing, and sees where stuff is moving.

An upper GI is like a swallow study, but it watches all the way to the stomach.

We've done an endoscopy, where they scope the esophagus, and just recently, a throat scope.

DFS won't swallow, and no one knows why. He never ate well, and has horrible reflux (cobble stoning of the throat). He puked CONSTANTLY (at least 10+ times a day). At 4 months, when the suck reflux goes away, he stopped eating entirely. He was put on an NG. We had that til he was about 7 months old, when they put in a G tube because they said the puking was being aggrivated by the NG. NGs are a nightmare anyway. G tubes are SOOO much more humane. So, then he had the G, and continued to puke. We did OT, PT (for pervasive muscle tone issues), ST, and he had an outpatient feeding therapist from the children's hospital weekly. If you put anything with a flavor in his mouth, he gagged. Toys, he was fine with. But the instant there was a flavor, he was a mess. We tried and tried to get him on bolus G feeds (being able to feed 3-4 ounces at a time, and then come off the pump) and despite 10 hospitalizations, he never was able to do it. At 16 months old, we took him to feeding boot camp (a week-long, inpatient feeding program). After 2 days, they determined that until the puking stopped, he would never eat. They put in a J tube, which was a lifesaver for all of us. He would still wretch, but nothing would come up. We put a drain bag on the stomach, so there was little fluid in it. At 2 years old, we were thrilled when he put a lollipop in his mouth himself and licked it.

Now, he will put ANYTHING in his mouth. He just won't swallow it. He spits it all back out. But, we have turned the corner in the past 2 months, and he started swallowing a couple things--ice cream being the very first food he wanted to swallow. He loves diet coke, too.

One thing about feeding therapy--you lose all your perceptions about "healthy" eating. I will give him whatever he will put in his mouth and swallow. The first thing we worked with were organic Cheetos. They taste good, melt in their mouths so it is less of a choking hazard, and the kids can hold them easily and feed themselves. Now, a typical meal (and every meal is a therapy session) consists of goldfish, cheese puffs, pudding, ice cream, chips, and a tiny taste of whatever the rest of us are having for the meal.

I would google Food Aversion. Food averse kids see food differently than normal kids. To DFS, the table was an evil place, and he became agitated. He is slowly getting over it now, but he would never have come up to me and said "Mommy, I want a cookie." It is hard to get his preschool teachers to understand that you can't bribe him with junk food. He doesn't want it. He will tolerate it for praise, but as soon as he can possibly get down from the table, he will throw his plate on the floor and try to bust out of his booster.

Once you get a little further down the line, there is a great philosophy called Food Chaining that really has helped us a lot. I also suggest you read "The Out of Sync Child" because a lot of feeding issues are really symptoms of bigger sensory issues. If you get the sensory issues under control, it can help if you are having sensory triggered feeding issues.

Good luck mama! I hope you get answers soon!
thank you for your post! it sounds like you have been through quiet a lot with your dfs. i am going to go to the library today and pick up that book. my youngest gets overwhelmed very easily- for example, i have to put him in my boba and wear him at the grocery store or he gets overwhelmed and cries, prefers to be in a quiet, dim room. do those sounds like sensory issues, or just a introverted personality?
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Old 01-08-2012, 11:27 AM   #7
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Re: difficulty swallowing?

It is very possible that it is a sensory issue. The book is great, and you may find some helpful info there.
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Old 01-08-2012, 03:18 PM   #8
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Re: difficulty swallowing?

That is a good book. Also Just One Bite is a good read. My d hasn't had any GI trouble or even swallow tests or anything the same way pp have written---but he has a food aversion and does have issues with swallowing. He gags and sometimes makes himself throw up when he has any food in his mouth. He also won't use his teeth, so if you ask him to eat a grape for instance, he'll gag and just hold the whole grape in his mouth forever, sucking on it and gagging. If you finally get him to bite into it he really starts gagging.

It's really scary actually at times because I begin to worry that he will choke just from being so over careful with food in his mouth rather than just trusting and eating it. And then there's the nutrition fears.

Anyway---all of his issues with food stem from sensory issues due to his pdd and ocd/anxiety. He had these food issues as an infant as well. He nursed great but once solids started getting introduced it was slow going. I always had drs dismiss my concerns (it's a phase---little kids are picky---just keep offering blah blah) until he just kept dropping off things he would eat until he was 3 and I insisted someone take me seriously.

You may ask if you can get a referral to see an OT who is familiar with sensory issues and works with infants as well.
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Old 01-09-2012, 03:07 PM   #9
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Re: difficulty swallowing?

My daughter has swallowing issues as well. The swallow study would also be able to tell you how he is moving purees around in his mouth which could give some information. We have a feeding therapist who is an SLP and she's fabulous. My daughter is only one, but she has made huge gains in feeding since working with someone consistently. We do oral motor work and exercises to help de-sensitize her mouth. We also do some to wake up her mouth (she has low tone). She is an aspirator, so we thicken her fluids, but it's an easy fix to make for us.

There really are so many different things with food and swallowing and eating. It's the most important thing we as parents are responsible for, and it's really stressful when it's not working. Getting intervention and a team to support you is the right thing to do. Try not to be scared of it and think of it as a way to getting where you want to be (with him eating and healthy). Hugs!
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Old 01-10-2012, 01:28 PM   #10
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Re: difficulty swallowing?

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Originally Posted by jennyfa View Post
My daughter has swallowing issues as well. The swallow study would also be able to tell you how he is moving purees around in his mouth which could give some information. We have a feeding therapist who is an SLP and she's fabulous. My daughter is only one, but she has made huge gains in feeding since working with someone consistently. We do oral motor work and exercises to help de-sensitize her mouth. We also do some to wake up her mouth (she has low tone). She is an aspirator, so we thicken her fluids, but it's an easy fix to make for us.

There really are so many different things with food and swallowing and eating. It's the most important thing we as parents are responsible for, and it's really stressful when it's not working. Getting intervention and a team to support you is the right thing to do. Try not to be scared of it and think of it as a way to getting where you want to be (with him eating and healthy). Hugs!
can you give some examples of the motor work you do--is there a website or book that you reference for this? Thanks.
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