Author Topic: Fussy Feeders - Dysphagia - a possibilty other than reflux  (Read 94362 times)

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Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #180 on: July 06, 2007, 02:50:31 am »
Today has been the worst day probably yet. Days like these make me long for when he's majoring in solid food... there's no issue there! Is it normal at this age then that they don't want their bottle when awake? Should I mention this dysphagia to the doc and see what he says? He gags a lot and that's normally the end of the bottle session. Maybe we're using nipple that's too fast? But he was fussy a lot on the last, which is why we went up one. Also.. is very gassy lately. Do solids sometimes make their stomaches hurt? Just don't know what to do with the little guy!! Thanks a lot!

Sfamily-just keep doing what you're doing.  I'm really glad you've had success with the thickener and that things are going well for you.  Jakesma-I can tell you that if he's having trouble then go back to the slower flowing nipple or the slowest flowing nipple as your first step.  He may be more gassy lately too because:  1)  If it is dysphagia and he is showing incoordination in suck-swallow-breathe, then he may be gulping and/or taking in more air than he should and/or, 2)  it's pretty common for babies to have other GI issues as well (and yes, solids may make him gassy, my own lo's never had too much trouble except with sweet potatoes, but all babies are different!).

The older lo's with dysphagia get, the more aversive the bottle becomes to them.  They are more likely to take it when sleepy just because overall their sensitivity to everything is shutting down and they are less aware of any compromise to their airway (or anything else).  My sons best feeds were always his night feeds and his last feed in the evening.  He often made up for calories at that last feed sometimes (even at 2-3 months) he would take 9-11 oz. at that last feed whereas the rest of the day it was only 2-3 oz. per feed and then the fussiness would begin and we would struggle to get him to eat for the next hour.  Definitely mention it to your doctor.  If you're lucky, he'll take what you're saying seriously and try to help you, but I must warn you that many people don't have much luck with the doctor (as you can probably read in past posts).  I hope you get some relief quickly, I know and feel your frustration and pray that you get answers soon so that you and your lo can resume pleasant feeds.  Hang in there, there is an answer and it will get better.  If you don't have luck with the physician, as you have also probably read, some try to thicken without a modified barium swallow test.  I don't necessarily recommend it, but when you're desperate and not finding any help, it may become a necessity for you to resume some normalcy with feedings.  Let me know if I can be of more help.................
Nancy

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Offline JAKESMA

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #181 on: July 06, 2007, 12:32:13 pm »
What do I use to thicken? Rice seems to make it flakey not necessarily more thick. What else could I use?? Thanks!!!

Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #182 on: July 06, 2007, 19:49:49 pm »
I'm not certain where you are from.  I live in the US and my #1 choice is Simply THick.  If you read back in the posts, you can see why.  It's pricey, but it thickens perfectly, easily and stays the same consistency over time without getting too thick.  Another option is powdered thickener which is inexpensive and can be found in most drugstores.  In the US a few we have are Thick-It and Thicken-Up.  IF you just ask the pharmacist for a liquid thickener, they will know what you're talking about.  Try it if you can't wait to see if the dr. will refer you for a swallow study, but at least attempt to talk to your physician about it or contact a facility which may do pediatric modified barium swallows in your area and tell them what you're experiencing!  HTH!
Nancy

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Offline SarahRB

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #183 on: July 08, 2007, 04:15:03 am »
My DS is only 5 weeks old and I have noticed the symptoms that you had with your son, Nancy.  Ever since he was 1 week old I have been talking to my Doctors about his sceaming and thrashing when I am trying to feed him his bottle.  When I stop feeding him he will stop crying. It is gut-wrenching becuase I know that he is in pain but he is also hungry.  I have been giving him gripe water but it hasn't helped.  I thought that it may be reflux but he doesn't throw up alot.  I noticed that he also has a stuffy nose when I feed him.  I am going to talk to my Dr about having the test done because I know that something is wrong.  My daughter was a fussy eater but not like this!
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Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #184 on: July 08, 2007, 18:59:11 pm »
Sarah,

your lo's showing classic signs of dysphagia and I hope you have luck with your doctor.  It isn't uncommon for this to run in families, so even if your daughter wasn't as bad (and babies vary in their reaction to dysphagia) it may have been the same thing.  Good luck and let me know if you have more questions!
Nancy

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Offline SarahRB

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #185 on: July 09, 2007, 21:07:21 pm »
Nancy,
  Some other questions that my husband and I have are these: 1. Does it have to happen EVERY time he drinks a bottle?  I know that you said that they drink better when sleepy, so my son is upset about 3 out of 7 feeds.  During those 3 feeds he seems frantic.  His hands are swatting at the bottle, his brow starts to wrinkle, he starts turning his head from side to side and starts to sputter milk out of his mouth.  This is when I start to hear his nasal congestion.  If I take the bottle out of his mouth then meal time is OVER.  He will not take anymore.  I can usually get him to drink about 1.5 to 2 oz. before he starts showing signs that he is getting upset.  Sometime I try to talk him through it and can get him to take 3 to 3.5 oz.  but that's it!  I think that he should be drinking more because he was born 10 lbs. 1/2 oz!  He is not losing wieght, he is growing.  I don't think that it is a problem with formula because we changed to soy (as per my Dr's request) and he seemed even worse to the point that he wasn't drinking any formula so we swithched back.  *2.  Can this be due to gas?  He is having a bm about every 3 days and can be quite gassy with toots.  Burping him is a bit of a challenge and he only burps about 1/2 the time.  My husband says that he thinks that it is gas but my instincts are telling me it is also something else...   3.  Does your son wake often in the night because he isn't getting enough food in the day?  I find it hard to follow the 3 hour EASY because he doesn't eat very much during the day and wakes after 2 hours with his hungry cry.  But then because he is upset, feeing him is a challenge and that's when I can usually only get him to take about 2 oz.  Anyways, I know that you are not a Dr and I have made an appointment to see my DR this week but you obviously know alot about this topic and any more info would be greatly appreciated...
Sarah
SRB

Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #186 on: July 10, 2007, 02:00:56 am »
1. Does it have to happen EVERY time he drinks a bottle?  It most likely happens with all bottle for which your son is more alert-the signs he is giving are really very much that of a lo with dysphagia.  It honestly sounds a LOT like my son did when he was little. 

My son continued to gain weight for quite some time (months) and then it slowly decreased.  He never actually stopped gaining, but at one point he just didn't make any changes in weight.  Oddly enough, these lo's don't always lose weight, but many do and failure to thrive becomes an issue.  Dr's are reluctantly to refer until lo's start to lose weight.  Something I maybe haven't made clear to mom's in the past is, there is really no reason to weight until they lose weight.  I'm saying that because, speech pathologists are the ones who diagnose dysphagia, not GI Dr's you often can't get a referral to unless lo's start losing weight.

  *2.  Can this be due to gas?  He is having a bm about every 3 days and can be quite gassy with toots.  Burping him is a bit of a challenge and he only burps about 1/2 the time.  My husband says that he thinks that it is gas but my instincts are telling me it is also something else...   

Many babies have gas and my son was no different (nor my daughter), my son also had fairly significant gas and reflux and constipation was a problem too.  This is not a stand alone issue by any means, but the signs your lo is showing are more related to feeding, not gas.

3.  Does your son wake often in the night because he isn't getting enough food in the day? 
My sons sleeping was nightmarish until we got the feeding figured out.  I'm not kidding you (nor trying to give you too much hope) but as soon as we got the feeding sorted out, he completely fell into a schedule (around 4 mos).  It could be coincidental, but he also just became a more content little guy.

Anyways, I know that you are not a Dr and I have made an appointment to see my DR this week but you obviously know alot about this topic and any more info would be greatly appreciated.

I'm definitely not a Dr., however speech pathologists are the ones who identify and diagnose dysphagia, not doctors.  Hopefully you can find a pediatric speech therapist in your area who deals with dysphagia.  Call around-your Dr. can just refer you to a speech pathologist rather than a GI physician and get the whole thing rolling a lot quicker.  I hope this has been helpful.  If you need more answers, let me know!
Nancy

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Offline Aspen_chloe

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #187 on: July 16, 2007, 04:10:19 am »
Just wanted to update-I bought Simply Thick to try and dd seemed to be frustrated with it. While working on that feeding I tried (successfully)) to feed her with her on my legs and my feet propped on a table so she is laying on her back on my thighs. I tilted the bottle to the right so she had to turn her head to the right and thus couldn't choke so much. It was a miracle worker! I figured she might get use to Simply Thick but she was so mad that night I just gave up and we discovered our own little solution. Now I don't have any problems if I feed her like that - she refuses a bottle in the "cradle" hold. I also have to be patient and pull the bottle away and let her "restart" occassionally.

Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #188 on: July 16, 2007, 19:13:40 pm »
Good for you!  There are definitely some positioning techniques that can be helpful and as much elevation as possible (and especially with a head turn) is one good way.  At least you have the thickener available if you need it in the future.  She may not like this position for much longer, however, she may also switch to another position, but learn to turn her head as that's what she will be used to and that will be helpful.  So glad that things are going better!
Nancy

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Offline clarapist

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #189 on: July 17, 2007, 01:33:52 am »
Hi Aspen--
A possibility with the Simply Thick is to also play with the amount that you thicken. I started using it with my DS at about 3-4 months. I thickened the formula to 1/2 strength (ie instead of 1 small packet to 4 oz, I used it with 6-8 oz). I also used the next flow rate up with the nipple (size 2). HTH

Jill
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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #190 on: July 17, 2007, 02:17:28 am »
Thanks! I figured I did it too thick for the first time. So if she starts to have issues again, I'll try it with less in it. I noticed it increases the amout of liquid in the bottle by quite a lot. Does this decrease their actual intake of formula since they have more "filler" in it or do they just drink more liquid?

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #191 on: July 17, 2007, 20:24:01 pm »
Hmmmm- I don't recall there being much of a difference. I think b/c I made formula in a pitcher and then made bottles to put in the fridge. 
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Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #192 on: July 17, 2007, 23:46:36 pm »
The amount will seem a lot greater at first, but as the formula/thickener settles there's little to no difference in the amount.  I too always made mine up the night before so I never really noticed it when I went to feed; however, just make up as much formula as your lo would normally feed and then thicken as directed (1pkg/4oz) or as you see fit!
Nancy

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #193 on: July 20, 2007, 14:30:45 pm »
Hi, I've just come across this thread and it sounds like my dd may be in the early stages of this?  She is almost 10 weeks old.  Last week, I noticed she was taking a long time to finish a bottle, drinking an ounce or so then coming off, being winded, then drinking an ounce at a time until finished. Looking hungry but just not drinking very fast.  I changed to the next size teat about 10 days ago.  On monday (evening - very awake) she drank an ounce or so of her bottle, then started screaming and went rigid (head back, back arched, legs extended).  It passed after a few minutes and she was able to finish her bottle.  Monday night she slept through for the first time, well near enough - she woke up at 6 and I held her off till 6.30 so she was pretty awake to feed and we had the same performance.  She was fine all day and then the same thing at her evening feed.  Wednesday went to the doctors and he said, colic, peristaltic pain, whatever, and gave her colief (lactase) drops which so far have made no difference.  Every evening and probably 1 or 2 other feeds a day she will drink an ounce maybe and then scream.  When I put the teat in her mouth she will scream.  It's like she settles down then and will take more, but when I try to put the teat in her mouth she pushes it out with her tongue several times but if I persist she will take it.  She is taking 40 minutes to finish her bottle.  She is fine at night (dream feed and night feeds) and about 1/2 the day feeds.  The other thing I have noticed is she sticks her tongue out a lot, pushes it out of her mouth.  (This sounds horrible but to me it looks like a baby with down's syndrome - this is what it reminds me of).  This stops her from taking a pacifier.  She coughs and sneezes quite a bit but is a good sleeper.  I have an appointment with my GP this afternoon and will ask about this.  Oh the other thing, I have started giving her infacol drops with a dropper thinking this was trapped wind and she is VERY distressed to take drops.  Any thoughts?  Thanks





Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #194 on: July 20, 2007, 15:19:18 pm »
I would definitely put the bug in your dr.'s ear about this.  If you're one of the fortunate ones he/she will listen to you, but I must tell you not to be too optimistic about that.  Her signs/symptoms sound like this is what it could be, but it's hard for me to say for certain.  Does your lo reflux?  Since having trouble with the increased nipple size, did you go back tot he smaller size-if you haven't go ahead and do that now.  The length of time it's taking her to feed and being more fussy when awake for feeds are a few telltale signs. She has enough signs that it would make me want to rule out dysphagia. 
Nancy

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