Author Topic: Fussy Feeders - Dysphagia - a possibilty other than reflux  (Read 94364 times)

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Offline gemz

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #75 on: March 30, 2006, 10:19:43 am »
Hi Nancy  :D

Thank you for your advice - it is greatly appreciated.
Firstly, I must apologise for stating incorrect information.   :-[I did not see the comment about "not suitable for under 3's " on the simplythick website, but on a nestle website (see http://www.nestle.co.uk). I was searching for a UK company that makes thickener, and came across this statement which made me think that maybe all thickeners are not good for under 3's. 
Having looked at the simplythick website again this morning I did read the article about the twins. I am going to go ahead and order the nectar thick as you suggested and feel much more comfortable now knowing your lo used it from the same age as my lo.I'm just hoping that simplythick will ship to the UK.
I presume it should be ok to use with a lactose free formula? One question : do you know if the  simplyquick thickener is absorbed by babes or not - I have been told by the health visitor that gaviscon  is not absorbed by babes and is also a thickener, but I think she means it thickens once inside tummy, not thickens the feed as such as it is not helping in the slightest.

Thank you again for your support and advice and apologies to all at simplythick. (oops).  ;)

I will let you know how things get on and if we are able to secure an appt with a speech therapist.   

Thanks again

Monique

Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #76 on: March 31, 2006, 02:49:47 am »
Monique,
The simply thick will be fine with lactose free formula, but what I think you'll find is that if it truly is a swallowing disorder, you can probably get rid of the lactose free formula as it's the dysphagia, not lactose-intolerance that's causing the issue (though I could be wrong).

As far as if the thickener is absorbed, I'm not totally certain that I understand the question, (so tell me if I'm way off), but simply thick is safe for your lo.  I'm not sure what your HV means about the gaviscon, but I know it won't thicken your lo's formula and it won't help if the problem truly is dysphagia. 

Hopefully you'll find some relief with the simply thick.  If the nectar-thick doesn't help after a few days, you can use 2 packets to thicken to honey thick consistency.  If simply thick doesn't ship to the UK, maybe contact them and see if they know of any similar products available to you.  Let me know how things go!
Nancy

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Offline maxmum

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #77 on: May 08, 2006, 23:24:45 pm »
Hi, just a quickie, my lo has just been diagnosed with reflux and he too much prefers feeding whilst asleep or very relaxed, however he has started feeding better when awake after giving him the reflux meds.  Is better feeding when relaxed/asleep a symptom of reflux alone?

Thanks.
xx

Offline Debonair

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #78 on: May 09, 2006, 07:15:15 am »
I believe Yes it is, due to the indegestion they get just after feeding it's too painfull for them so they prefer to be relaxed to cope with it.  ;)
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Offline maxmum

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #79 on: May 09, 2006, 11:21:49 am »
Thanks, it's so stressful trying to work out what his symptoms are caused by, luckily i think i can rule dysphagia out though.
Take care.

Offline Debonair

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #80 on: May 09, 2006, 12:45:39 pm »
I was just saying today to my mum how you just really hate to see your baby suffering and how very stressfull it can be!
Hand on heart it really will get better as baby gets older, just spend your time loving, cuddling and cherishing theese days even if they are full of screaching, heart renching cries, it soon goes and funny enough you miss it....you'll understand what I mean in about a years time.
LOL X
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Offline maxmum

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #81 on: May 09, 2006, 13:36:00 pm »
Thanks for kind words, it is hard but it's all washed away when he sees my face and his lights up with a big gummy smile and excited laugh.  :D

xx

Offline eborgman

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #82 on: May 13, 2006, 02:35:51 am »
Your posting was very interesting.  My 11 week old has never seemed to feed well or "right".  He was born at 35 weeks, weighing 6 lbs 10 oz and the doctors say that he shouldn't have feeding probs unless he was born at 30-32 weeks.  Anyway, after reading your post, i called the pediatrician and spoke to a nurse and described what he does when feeding.  We ended up in the office to see the doc who has referred us to a speech therapist to determine if the barium test is necessary.  I could answer all of the questions the same as you except my guy doesn't have an aversion to the bottle. (yet).  He also eats the first half of the bottle pretty well, with minimal gagging.  When i offer the second half he takes about 2 gulps, acts like he can't breathe and juts his head back to take a deep breath.  He is also VERY congested all the time.  was yours?  It is usually not running out of his nose, but i can hear it in his breathing.  It almost sounds like he has fluid or phlegm at the back of his throat.   I have also wondered if i may be feeding him too much and that is why he gags.  I don't know.  he gives me the hungry cues even after half the bottle, and he will usually finish 5-6 ounces every 3-4 hours.  But the last half is a struggle for him. 
Thanks for your help.

Emily

Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #83 on: May 13, 2006, 12:42:42 pm »
Emily,

If you came to me with your story, I would definitely recommend a modified barium swallow.  My lo was congested basically after every feed and no, it didn't come out of his nose, it was like you could just hear the congestion in the back of his nasal passage/throat area.  A lot of times you may not notice the problems until they are well into taking the bottle because as they drink, their swallowing becomes more uncoordinated.  What did the speech therapist recommend?  Definitely pursue it.  Let me know if you have more questions!
Nancy

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Offline Isaacs mum

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #84 on: May 14, 2006, 21:34:30 pm »
Hi, I would like to say thankyou to luke_-n-me and rooby rooby roo.( because of you we wouldn't have known about this) I'm new on here and only found the site because a member's husband off here (his nickname is the royles) on another forum posted this thread to me. My little boy Isaac has been crying and crying for weeks through his feed's and show's all the symptoms of dysphagia. So when we went to see the health visitor on thursday we mentioned it to her and she sent us in to see the doctor. We are now being referred to a paediatrician as the doctor think's this could be what Isaachas got. So hope fully his feeding should be sorted soon. Please could someone answer my questions for me?
What happens if this is what he has got?
How serious is it?
What can I do to help him until we get the appointment through?
What treatment does it involve?
Thanks everyone xxxxxxxxxxxxxx
« Last Edit: May 14, 2006, 21:57:26 pm by Isaacs mum »

Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #85 on: May 15, 2006, 02:07:17 am »

I'm so glad that once you found this info that everyone helped you easily and quickly, that's a great start.  First off, how old is your lo?  As far as your questions:

What Happens if this is what he has?:  What should happen is that during the x-ray they will watch your lo with different levels of thickness in a bottle (regular, nectar and possibly honey or pudding thick) and they will determine what thickness your lo is tolerating.  You will need to buy a liquid thickener and thicken his bottles to that consistency.  The younger he is, the quicker he will come to tolerate the new viscosity and have an easier time taking bottles.

How serious is it?:  Dysphagia can be a small part of more complicated issues.  But when dysphagia is your child's only issue, it's no big deal at all.  He will simply outgrow it with age.  We finally stopped thickening Luke's liquids around the time of his second birthday.  Some outgrow it much earlier, and some a little later, but the good news is that they all outgrow it.

What can I do to help him until the appointment?:  How long do you have to wait?  I didn't used to recommend this, but now I do when people have to wait forever-go to the drugstore and buy a powdered thickener and try to thicken to nectar consistency.  It may take more than one bottle for you lo to tolerate it (or he may immediately take to it and be fine).  If you go a couple of days and notice no change, try the honey consistency.  The directions should be right on the container.

What treatment does it involve?:  Unless he has developed severe oral aversions and oral-sensory issues, the only treatment is the thickener and some follow-up appointments with the speech therapist to determine how he is doing.  Your lo will outgrow it.  If you start to give your lo baby food, for the runnier foods you should thicken them by sprinkling a little powder on them too and when you mix up cereal, make it thicker, more like applesauce versus making it super runny as they suggest. 

Let me know if you have more questions, I hope you get your appointment soon!
Nancy

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Offline Isaacs mum

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #86 on: May 15, 2006, 21:14:26 pm »
Hi, thanks for answering my questions, Isaac is 9 weeks old now and this has been going on for most of the time. We had mentioned it to the health visitor but she kept saying see how it goes. We are moving on Friday so I need to register at the doctors on the Monday and then hopefully the refferal will go straight through. I'm really looking forward to enjoying feed times again, thats what is worse really he is such a happy chappy untilits time for his bottle, bless him. I hope everyone else is getting on ok xxxxxxxxxxxxxxxxx

Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #87 on: May 16, 2006, 01:29:20 am »
Good luck with your move and I hope you find some answers.  If it is dysphagia, at least you've caught it early and hopefully you and your lo will be able to enjoy feeding times again.  Let me know how you are getting along!
Nancy

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Offline harriets mom

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #88 on: May 19, 2006, 09:47:22 am »
This was originally posted by Luke-n-Me, but we seem to have lost the original thread :( . I know if anyone has any questions about this then Nancy (Luke-n-Me) is more than happy to be PM'ed with questions, or just post a reply here and she'll post back.

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

I have read many posts regarding babies who are difficult to feed. Many are contributing this to colic, GER or formula intolerance. I just want to let you know of another possibility that is little-known. A swallowing disorder called DYSPHAGIA-something that can occur even in "typical"children.

My son is now 14 mos., but at about 9 weeks of age, he started to scream when presented with the bottle and refuse to take his bottle. I was lucky to get a couple of oz. in him. I went to the dr. week after week trying to figure out what was wrong. He did have reflux (which nearly all infants have) and at first it was contributed to the reflux. But after a trial of zantac with no improvement, I went back to the dr. Our next step was to try switching formulas(intolerance?), we tried soy-no help; then onto nutramigen-again no help. He was starting to slow down in weight gain, so then we thickened up his formula with cereal, it helped a minimal amount, but because we had to cross cut the nipples and make the hole larger, it was just creating the same problem. We also had a barium swallow to look for reflux-nothing significant was found. Finally, Luke lost a few oz. in weight and I was referred to a gastroenterologist at a Children's Hospital a few hours away. Nearly before I walked in the door, he knew what the problem. Here were the questions that he asked me:

1) Does he eat better when he's sleepy?
2) How long does it take to feed him?
3) Does he scream and when he sees the bottle/before he starts to feed?
4) Does he seem fussy while he eats vs. after he eats.
5) Is he congested or had any other respiratory problems.

My answers were:

1) He definitely eats better when he's sleepy
2) It takes at least 45 minutes to feed him
3) He does fuss/scream when he sees the bottle/breast
4) He is only fussy when he eats. As soon as the bottle is taken away, he's fine.
5) He's been chronically nasally congested for weeks.
**watch for coughing/choking and lots of gagging during feeds as well.



These are all signs/symptoms of dysphagia. 1)They eat better when they're sleepy because they aren't as aware of the liquid entering their airway;2) It takes forever to feed them because they are screaming and fussing trying to protect their airway; 3) They learn that the bottle/breast is something to be afraid of; 4) They fuss when they eat due to the liquid entering their airways (aspiration), if it's reflux, then fuss after feeding (drinking soothes reflux, it's after eating when they are burping up the formula/breast milk that the pain begins); 5) Anytime foreign particles enter the airway it can lead to upper respiratory issues.

He immediately told me that he was going to refer me to a pediatric speech therapist for a modified barium swallow (MBS) (x-ray of swallow function). I was immediately shocked because I AM a pediatric speech therapist and I had never heard of this-a "typical" child having a swallowing disorder. It's something that many medical professionals are unaware of, including pediatricians and obviously even speech therapist's who deal with swallowing disorders every day!

Sure enough, the MBS was completed and he instantly aspirated the liquid. I cried of course when I realized that all along we could have just had this study completed and gotten on with life. At this point he had been struggling to eat for 2 months!

THe therapist used some thickeners to thicken his liquid to a nectar consistency and immediately, he latched onto his bottle and started taking it with no problems. We had to thicken his liquid from then on (and still do). He is getting better, we did another MBS when he was 10 mos. and the liquid still got very near the airway, thus we still thicken. He will have another MBS in a few months and we will continue them until he no longer needs the thickener.

When we first started to thickener, it took him about a week to feel comfortable taking the bottle and knowing that it was safe for him to do so-his airway was no longer being compromised. He now drinks from a cup with thickened liquids and does great-no sippy cups though. He will eventually outgrow this and the way that he will outgrow it is by learning to compensate appropriately-he will learn to gage his drinking so that he can handle the liquid without it going into his airway. There is no therapy, it's purely a timing problem with the sucking/swallowing. Thickening helps.

If this sounds like your infant, talk to your dr. about it and request a prescription for a MBS. Be sure to find a speech pathologist who is used to and does MBS's for pediatrics on a regular basis-they are very different from adult studies.

Do not try thickening without first having a MBS as each child may need a different amount of thickening (honey or pudding thick, etc). If this goes on undetected it can lead to oral aversions, picky eating and sometimes refusal to eat. It can also lead to non-stop respiratory issues including congestion, ear infections, bronchitis and pneumonia.

I know how frustrating it is to feed a fussy eater and how desperate you can get to get them to eat. I decided to post a sticky because I've been replying and seeing so many women who are describing babies with this problem that I can't keep up with writing to them. I could continue, but instead if you have any questions, please post a message or a private message and I will get back with you ASAP.
_________________
Nancy

Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #89 on: May 19, 2006, 20:19:40 pm »
Harriet's Mom,

Did you have a question?  If so, I didn't get it, only a copy of my own post.  Let me know..........
Nancy

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