Author Topic: Fussy Feeders - Dysphagia - a possibilty other than reflux  (Read 93502 times)

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Offline clarapist

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #135 on: September 01, 2006, 15:12:30 pm »
Not too wordy. That makes perfect sense. Connor tends to have nasal congestion during feeds. I'm trying to determine if it correlates with his fussiness (only happened one time yesterday). 
I actually emailed Debra Beckman (are you familiar with her, she's "famous" in the oral motor world,apparently). She lives here in Orlando, where I do.  I hope she responds!

The fussiness during eating is better- now am dealing with 45 minute naps and HORRIBLE moaning overnight (Gas? Reflux?)
Last night he was MOANING and very restless b/n 3-5am.  Everytime he would break his swaddle, I'd reswaddle, but for the most part, his eyes were closed.  I fed him at 5:30 (after his first night feeding at 2:30 am), and after that, his moaning stopped and he went right back to sleep.
I elevated his mattress last night just in case he does have some reflux. Not sure if it made any difference.
In any case, after that 5:30 feeding, he slept till 8:30! (Our usual start time is 7:30 but heck if I was going to wake him!)

I know I'm adding more variables to this post. :)
Jill
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Offline erikak

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #136 on: September 07, 2006, 17:51:49 pm »
Hi Jill!  I am a mom who has had the exact experience.  My son's difficulty in eating started at 8 weeks also.  The issues you described couldn't be more familiar.  You can read that I've posted several times with the same frustrations.  I wanted to let you know that my son had both reflux (confirmed with an upper GI at 10 weeks) and dsyphagia (confirmed with an MBS at 7 months).  We are still battling it though things have gotten much much better since the dsyphagia was diagnosed and we responded accordingly.  I can say I've had lots of friends that had luck with low doses of PPI medications for reflux.  I am no doctor or therapist of any kind but both my children have had these symptoms and here are my thoughts of what we experience.  I believe that my son had difficulty eating because of the dsyphagia that started around 8 weeks and got worse again at 6 months as his sucking pattern changed and the increase in calorie demand.  In fact, he was much like your lo in that up until 6 months, he would only fuss about half of the time.  After 6 months, he fussed every feeding.  I believe the difficulty during eating is due  to his dsyphagia. However, I believe the short naps, nightwakings, gas pains and general discomfort a while AFTER our son's eating is his reflux.  I'm not sure if his chronic nasal congestion was due to reflux or dsyphagia but I can say that it is dissappeared in the last month.  Could be totally different for your case, I just wanted to chime in with my experience as I know how difficult this can be.  I have one friend who caught her daughter's problems early and with a combination of a low dose of prolisec and thickners solved her eating problems almost entirely.  I haven't been that lucky to find such a clear solution but I wanted to let you know of it. 

Good luck with everything.....

Offline kellyjsilva

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #137 on: October 04, 2006, 19:57:02 pm »
Hello,

I haven't posted in a while.  I strongly suspect my lo Nicholas (now 4 months) has dysphagia.  We have been thickening his formula since he was about 11 weeks old. 

I just feel the need to vent.  Hope that's okay.  We had a four month check up yesterday and he weighs 16 pounds 3 ounces - 75th percentile for both height and weight.  So he's gaining weight, yay.  But the bad news is that feeding him is still an almost constant struggle.  We thicken his formula - sometimes he is able to eat well, other times he eats a few ounces.  Then fusses and acts hungry and seems to have a lot of difficulty continuing to eat.  He grabs the nipple eagerly with his mouth, but then a second later his hands push the bottle away and he fusses.  It's so frustrating to see our little guy struggle.  The doctor is mildly helpful, basically just assuring us the "whatever we are doing seems to be working" since his weight gain is good and he is healthy and good natured.  Of course, he isn't there for feedings, which are almost always a problem.  He still doesn't eat the recommended minimum a day and I believe that the lack of fullness affects his sleep and mood.

My question for anyone who is reading is about solids.  I'm eager to start spoon feeding, hoping that he'll do well with more solid food and be able to fill up for ONCE.  What have been others' experiences with starting solids?  Should I do anything special due to his dysphagia?

Is there anything else I can do to help him other than thicken his formula?

I'm just praying he'll outgrow this as it is such a constant worry and so distressing at times.  Then other times he'll finish a whole bottle and I'll think I'm overreacting. 

Thanks for reading...

Kelly

Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #138 on: October 05, 2006, 02:09:42 am »
Kelly,
I hadn't heard from you in so long that I had to go back and read your initial post, which also tells me that, if you're still having a problem, maybe you need to try to change some things.  First of all, your lo may need even thicker  liquids.  If you're doing nectar, try honey and if you can, try to have a modified barium swallow test completed.  If you are still having trouble this test is absolutely warranted at this point.  I absolutely understand how you feel, Luke was always a big baby too and so to the Dr's it wasn't too worrisome, but to anyone who fed him, well, we were about to lose our minds.

If your lo is 4 mos., go ahead and introduce some solids, for 2 reasons.  One, because he isn't get as much calories from food, this will help (though you still need help to get him to take the bottle) and two, if he's a formula baby, they often do start solids at 4 mos.  What you need to do though, is just skip stage 1 foods and go to stage 2 foods.  Stage 2 is already thicker which helps, however, some are still runny (e.g. peaches) and you will still want to thicken them either with rice cereal or with a powdered liquid thickener from the drug store.  They are able to better control solids coming from the spoon, however, once they mix with saliva, they become thinner and they can have some difficulty.  It should be a really smooth process though as long as you thicken them up a little bit.

Please feel free to vent!  I totally understand the frustration and anxiety this can cause!  Ufortunately, I'll be out of town from Thurs-Sun, but if you have more questions, I"ll try to get back to you ASAP!  Good luck and hang in there!
Nancy

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Offline erikak

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #139 on: October 05, 2006, 15:16:45 pm »
Kelly, we had the exact same experience.  The thickners helped but didn't solve our problem entirely.  Once we completed the MBS we found out that our son had an oral-motor weakness that was causing his dsyphagia.  So he would tire out and get frustrated often even with the thickners.  Nectar level helped with the dsyphagia but we have also been doing tongue exercises and weekly speech therapy to help strengthen his tongue.  Our son does also have a tongue tie which in retrospect we should have clipped as a newborn.  We didn't know he had one or that it was contributing to his problems until 6 months age.  Just ignorant parents!  Anyhow, we had three fold issues going on 1) Dsyphagia 2) motor oral weakness (causing dsyphagia) and 3) reflux. So the thickners were only part of our answer (a big help though!) If you can have him evaluated by a speech path or even do the MBS you might get more answers.  Within 30 days of getting the MBS and starting the speech therapy our eating frustration were minimal compared to what it was. 
As far as solids, we did start at 4 months too.  It did help him get more calories that he needed.  He took to the solids really well (and still prefers them to this day :) )

Offline Shereejoy

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #140 on: October 08, 2006, 05:58:09 am »
Gosh there is a god, I am so thankful to have found this thread, any help would be greatly appreciated.

I fight with my child so badly to feed.  He was born tiny at 6lb 5.5oz (2.88kgs) and now weighs 5.29kgs at 18 weeks.  He has continued to gain weight but is dropping on the percentile charts rapidly and now sits well under 5 when he started on the 25th.  Tomorrow he is 20 weeks old and the paedatrician is putting us into hospital to monitor his feeding and do some testing.  I just can't wait to get to the bottom of this.  Summer coming on I am worried he will get dehydrated and because he is still so small for his age if he gets sick he has nothing too loose.

I wanted to continue breastfeeding but he forced me to stop.  At around 8/9 weeks he started to refuse the breast.  At 4 weeks he was diagnosed with Reflux and is on medication.  I continued to express for 4 weeks till he reached roughly 13 weeks, but with 2 hourly feeding this was becoming very time consuming.

He didn't appear to refuse the breastmilk in the bottle, although when on the boob always pulled off but assumed this was due to fast flow or his reflux.

Anyway they thought he had Cows Milk Protein Intolerance due to his explosive poos, they were froffy and green chunky at times.  The only reason why I agreed that this was a possibility was that when I put him on formula he had a upset tummy all the next day (and it was on Cows Milk).  So then we went onto a prescription formula (Neocate), he was ok on this for a couple of weeks then he just start drinking like he wanted it and then pushing it away continuously.  He is so strong, it is like he has a temper with it.  I was always lucky to get 60mls down his throat on a 3 hourly routine and that was pretty well forced, it was like 20-30 ml was always enough (just a top up to quench his thirst). But in saying that some feeds are better.

He does feed alot better when he is sleepy hence I would do alot of roll around feeds.  Like when he was on my boob the night feeds were always quite easy.  So now he is on formula his last feed of the night I am able to get alot down and I believe this is the only reason he has continued to gain weight.

He does seem to come off and gag/cough or splutter at times on the bottle.  And he just seems to throw up sooo much and it all comes up with little burps.

Hopefully tomorrow we will find some answers as it is so upsetting not to be able to feed your baby.

Any advice in the meantime would be greatly appreciated.  Do you think it is this condition you are all talking about?

Sheree :'(

Offline clarapist

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #141 on: October 08, 2006, 14:14:57 pm »
Hi Sheree,
Good LUCK in the hospital. SO sorry you're having to go through this. I'm not an expert, but here's my 2 cents: Make sure that you ask them to do a Modified Barium Swallow test. That is the test that can show dysphagia. (They might try to do an upper GI but try to get an MBS too.)  Also, see if there are any Speech Therapists in the hospital that specialize in feeding to evaluate his oral motor coordination while eating. (Or, could be Occupational Therapist in Australia- just depends on the hospital.)
Another idea is to see how he does when the formula is thickened.  (Though, that's also a remedy for reflux, but HEY if he has both, then it might help 2-fold!)

Many hugs to you. Let us know how it goes.

Jill
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Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #142 on: October 09, 2006, 02:46:28 am »
Sheree,

Jill gave you great advice.  Since your physician is sending you to the hospital for this, if they don't already plan to do a modified barium swallow, I would absolutely ask for one.  An upper GI, in addiition, will look for reflux and certainly these 2 things (i.e. dysphagia/reflux) do coincide, but I would definitely be firm about wanting a modified barium swallow.  Let us know how things go tomorrow, I'll say a little prayer that things get better for you!  Let us know if you have more questions!
Nancy

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Offline erikak

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #143 on: October 12, 2006, 20:50:09 pm »
Sheree,  I can't add any more great input than what's already been posted....but I will pray!  I know the difficulties you are facing.  My son was born 6 lb 10 oz, 25th percentile...dropped below 10 percentile by 6 months....but happy to report ..much thanks to Nancy...that the MBS we had done at 7 months gave us the info we needed to address his problems....we are now (just had 9 mo check up today) back up to 25th percentile!  Our feeding struggles are minimal now and he has settled into a better sleeping pattern.  Getting the MBS done was key for us.  Sounds like you are doing exactly the right thing by getting some tests done at the hospital and having his eating evaluated.

Everyone on this thread has been so wonderful and supportive and so thank again to Y'all!

Good luck, Sheree! God Bless!

Erika

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #144 on: October 12, 2006, 23:14:55 pm »
I just wanted to say that my daughter is finally getting into a pediactric specialist tomorrow morning (they said they were booked until december? anyway...) Im hoping that helps some of my daughters eating issues.  Wish me luck!

Offline sfamily

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #145 on: March 28, 2007, 14:21:58 pm »
Wondering if our little man could be suffering something similar to this. Ever since he was feeding he would latch and eat for a little while and then get fussy and start to pull his head to the side and let out a little cry.  He is on formula now and does the same thing with the bottle, latches on and eats for about 2 oz and then pulls his head to the side and get fussy.  We can usually shshsh him or try to burp him but he sometimes wont even eat a 3-4 oz bottle at 4 months.  Looking at a lot of othe posts it seems that similar age kids are eating more and less often.  He has been on acid reflux meds but we usually end up taking him off them as he doesn’t seem better or worse with or without them.  Also he seems to want to be held upright especially when eating and after eating.  He does most of he heavy eating during the middle of the night and only lightly eats during the day. 

Here is a sample of his eating schedule.
Also we tried the DB stage 2 nipples and he ate very well with them but would spit up almost half the bottle after every feeding so we moved back to stage 1 nipples.

any advise would be appreciated.

4 1/2 months old (14pounds)

6 PM            Bathtime rutine
6:30 PM        Bed time
                   Feeding 5 oz
9:30 - 10 PM Bottle Feeding 3-4 oz
12:30 AM      Bottle Feeding 3-4 oz
2:30 - 3 AM   Bottle Feeding 3-4 oz
5 AM            Wide Awake, Play time and tummy time with Daddy (20-30mins)
5:30 AM        Sleep sometimes in swing
8 - 8:30 AM   Awake
9-10 AM        Bottle Feeding 3-4 oz
10 - 10:30 AM Short Nap 20-30 mins
10:30 - 12     Play time
Noon             Bottle Feeding 4 oz
12 - 3 PM       Play time
3pm -3:30 pm Nap time 20-30 mins
4 PM             Bottle 3-4 oz
« Last Edit: March 28, 2007, 14:24:27 pm by sfamily »

Offline Luke-n-Me

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #146 on: March 28, 2007, 20:02:52 pm »
It definitely sounds like he could be having swallowing issues. He is loading up on calories at night when it's easier for him to eat (most of these lo's will eat better when sleepy).  If you can, talk to your doc and/or a local peds speech therapist and see if you can set something up.  In the meantime, stick with the smallest nipple size.  If you can't get anywhere with a physician or speech therapist we can discuss other options then.  The sooner this is remedied (if it is dysphagia) the better so it doesn't evolve into other issues.  Have you tried solids yet?  If so, how's it going?  It's entirely normal and quite common to have reflux and dysphagia.  Both of my lo's had significant reflux, but the meds did nothing for either of them.  Let me know if you have more questions or if I didn't answer one you wanted me too!
Nancy

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Offline clarapist

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #147 on: March 29, 2007, 12:30:57 pm »
SFamily--  that sounds EXACTLY like my LO from 8 weeks on. We did go to a speech therapist (I am friends with her, as I'm a Physical THerapist in the same hospital) and she actually thought it was reflux.  I was still convinced that it might be a combo of reflux/dysphagia, but b/c he wasn't having ANY problems with weight gain (16 lbs at 6mo) I didn't push it.  In any case, definitely try to get an eval from a Speech Therapist and you can try to get a swallow study to at least rule it out. (Swallow Studies are NON-invasive: baby just eats/drinks different liquids that have barium mixed in and then you can see the swallow on a moving Xray. It will show if it's going the right or wrong way.  Are you in the UK or the USA?
Anyhow, what was the AMAZING remedy for us was putting Simply Thick in his bottles. You can order a trial pack at http://www.Simplythick.com ($10 for a trial).  I didn't thicken as thick as the instructions, but did 1/2 thick (ie with a nectar thick packet, instead of 4 oz for one packet, I mixed with 8oz.) If you are in the UK, I am not sure if the will ship it to you.  If not, you could do rice cereal in the bottle to thicken, though it can make baby consitpated. We used a level 2 nipple with the thickened formula. We also had Connor on Prevacid, which I thought wasn't helping, but when I took him off of it, he got worse.
PM or email me if you have any other questions. At 6mo, we weaned Connor off of the Prevacid and also off the thickened feeds and he's GREAT now at 9mo (today!)

HTH
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Offline sfamily

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #148 on: March 30, 2007, 15:45:04 pm »
Great and thank you for the advice we are taking our little man to his Ped today and hopefully will get some help.  We had stopped the Axid without the doctors notification as we noticied he was starting to eat fairly well a month ago and i am wondering if it has a cumilitive effect or does it just work for the daily dose. either way we restarted the Axid a few days ago and he might be getting a littl better but its hard to tell...

He is on my lap right now and finished a 5 oz bottle without much spitting up at least for now.

Offline clarapist

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Re: Fussy Feeders - Dysphagia - a possibilty other than reflux
« Reply #149 on: March 31, 2007, 02:28:51 am »
Let me know how it went a the ped-- I mistyped above-- Connor was 16 pounds at 4 months, and 19 at 6. He's now 22.5 at 9mo.  (Oh my aching biceps!!)

Jill
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