Fussy Feeders - Dysphagia - a possibilty other than reflux

[Luke-n-Me]

Sorry I didn't respond before now, it's been a busy weekend!
 
It's hard to say how aspiration can affect a little one, but you would probably notice some wheezing/coughing, a stuffy nose/runny nose.  I doubt that not sleeping without any other symptoms is a sign of liquid in the airway.  Hope it's gotten better since you posted the question and good luck with the doctor tomorrow!

[erikak]

no problem!  He seems fine now other than his usually issues.  The thickeners seem to cause him quite a bit of gas so I have backed off a bit.  I have his MBS scheduled for Monday.  I am so curious to find out what might be going on.  Another thing I ahve been thinking about lately is a shortened freduleum (not sure on the spelling) or 'tongue tie'.  Curiously, my older son (who also had all of these feeding problems) had one.  I was assured early on by my ped that it would not cause a feeding problem.  I don't know how to tell if my younger son has one or if it could even possibly be related to what's going on.  I did have an appt with a speech pathologist already and she didn't mention anything about it.  The biggest thing puzzling me right now is that feeding has always been a problem (since around 8 weeks or so) but at 6 months things took a step change for the worse.  I found an article that said infants use their jaws up through 6 months for sucking/swallowing and then their tongues more so for sucking/swallowing after 6 months.  So one theory I am kicking around in my head is that it is something to do with him freheum? thingy.  Maybe it is not dramatically short but enough to cause discomfort.  He does take a pacifier ok.  My speech pathologist is out of town for the week so can't ask her just yet.  Ever heard anything like this or is my imagination running away from me?  Hopefully Monday we'll learn something from the MBS.
Thanks again for keeping up  with me!!

[kellyjsilva]

Hello,

I'm wondering if my son might have Dysphagia.  Although he weighed in at the 80th percentile at his 8 week appointment, he has always had feeding problems.  They seem to be getting much worse (he is now 11 weeks old).  I plan to contact my Pediatrician tomorrow to schedule a weigh in, because I suspect his good weight gain may have dropped off. 

Here are the details:

We've always had latch issues when nursing, and until recently he has never been able to handle a standard size 1/Newborn nipple (dribbled out of mouth and caused gasping/choking/sputtering), other than Dr. Browns narrow based nipple. 

He typically eats 1 - 2.5 ounces comfortably (or nurses for about 5 minutes), then makes a wheezing/gasping sound or just pops off the bottle/breast.  After a burp, he is nearly impossible to get back on the bottle/breast, without lots of effort/fussing/waiting. 

He continues to act very hungry (bobbing, head butting, flailing, making mouth movements) and eagerly takes the bottle or breast, but spits it out after a second or one swallow.  After a few times he becomes frustrated.  He won't accept a pacifier or spits it out.  This goes on for a while and we either play (daytime) or comfort him back to sleep (nighttime/naptime).  When he finally calms down we are sometimes able to get another ounce or so down.  Usually 3-4 ounces total, with much cajoling, over the course of an hour or two.

On the rare occasion that he eats more than 4 ounces, he sometimes spits/vomits what seems like the entire bottle (my shirt is drenched, his clothes are drenched, milk in his hair and nose and face).

Random note - may be related - his breath always smells like sourish milk/formula.

Now that he can handle all size 1 nipples, we've tried every bottle/nipple on the market.  We've also tried other formula (Gentlease), which was much worse. 

He isn't congested at all.

He often naps for 30-45 minutes and then wakes up squirming and kicking (he sleeps on his tummy as will not stay asleep on back at all and acts like a wild beast when swaddled).  If he eats or is able to be soothed back to sleep he will sleep another 2 or even 3 hours.  He sleeps pretty well at night.

Sorry for all the detail, but I wondered what you thought.  I have a very laid back Pediatrician who feels that as long as his weight is good, his eating issue must not be serious.  Like I'm just a typical first-time mommy who overreacts to every little thing.  Maybe I am!  But I just feel like something is not right when my fairly big baby (13+pounds) can't eat more than 3, maybe 4 ounces at a time, never gets the recommended minimum food per day, and acts so frustrated about it!

What do you think?

Thank you!!

Kelly Silva
kellyjsilva@msn.com

[Luke-n-Me]

Kelly,

It's impossible for me to diagnose without seeing your lo, however, from your story, if you were a mom who called me at work, I would say bring him in immediately, I would start thickening immediately and we would be scheduling a modified ASAP.  Your story sounds nearly exactly like my son when he was that young (except he was congested on and off, but not all the time).  he was also a very big baby so it took a long time until his weight gain finally started trimming back.  Honestly, there are too many pediatricians who take a "wait and see" approach, not only with feeding issues, but with other delays as well (IMHO), I would be very persistent about this and get a referral to see a speech therapist and to have a modified barium swallow (NOT a barium swallow).  You could try thickening now if you wanted to.  I absolutely recommend simply thick, but in the meantime, until you have more info, try the powdered thickeners you can find at any drugstore (thick and easy, thick-it, thicken-up, etc.) and try thickening to nectar consistency and give it a few days and then, if you don't notice a difference, try the honey thick.  Keep in mind, it may take a few days for him to catch on to use of the thickener and DO NOT change nipples or make the opening larger.  Try this, and see if it helps and let me know if you have more questions.

[kellyjsilva]

I just wanted to let you know that we got our son in to see the Pediatrician today, after talking to the nurse on the telephone about our feeding issues.  Our son is still gaining weight at just the right rate.  However, we stressed that it is a big "to do" to get him to eat the 21 ounces a day that he currently consumes.  Our Dr. agrees that is probably a fairly mild Dysphagia problem and has put us on thickener.  If that doesn't help, he suggested we see a speech therapist for a swallow test.  I was so pleasantly surprised that he agreed with what we've been suspecting and the advice you gave me, as I was expecting him to dismiss our concerns due to the healthy weight gain.  I always find that "been there done that" Moms are much more helpful than Pediatricians, so I was delighted that he concurred.

We're thickening with rice cereal until we can get Simply Thick.  My question is regarding nipple.  You said to just stick with the same nipple he's been using?  It's a size 1 Dr. Brown's.  Or should I switch to the x shaped nipples meant for cereal?  Not sure.

Thank you SO much for your help.  If I hadn't happened upon this thread I would still be thinking "I guess he's not hungry?" and crying with frustration because I knew something wasn't quite right and was at a loss to read his signals (hungry, but won't eat).  I don't know if I would have called the Dr. at all, and if I had I wouldn't have known exactly what to point out as being "not quite right" and probably would have gotten a diagnosis of reflux or gas or just normal fussy baby behavior.

Thank you!

Kelly Silva

[Luke-n-Me]

Wow, Kelly, that's good news!!!  Regarding the thickener, for cereal, you probably have to use the x-cut, but when you start the simply thick, just use the nipple you were already using (I think the Dr. Brown's #1 is what you said), you shouldn't have any difficulty with that, if so, try the #2, but definitely, no cross-cuts.  Hope you see results and let me know how it's going!

[erikak]

Hi Nancy!  I am so glad to see you've helped another mom.  I wanted to let you know the results of my lo MBS.  They found that he had a 'weakness' in his anterior to posterior tongue motion (starting from the back of his tongue).  I haven't received the written report yet but she did give a specific name to it (which I will follow up and post again).  She said this weakness was causing his suck to be disorganized, liquids to pool and approach his airway and tongue fatigue.  She did also say that in conjunction with this she thought there was also significant reflux going on.  She said that lots of infants with swallowing problems also have reflux. Not sure the connection there.  But we will be seeing a GI specialist in Sept.   In the meantime, I am going to try him on Prolisec (only med we haven't tried yet).  We are also going to take him to therapy once a week with a ped speech pathologist to help him with the 'weakness' in his tongue. 
Hi Kelly!  Wanted to say hang in there and also to possible consider a trial on reflux med just to see if it helps. May not be the main problem but as my speech path put it...could help minimize any other issues around eating. 
Thanks again so much Nancy!  What a wonderful resource you've been.  I truly would not have come this far without your support!
Last question on using simple thick, is there any technique to mixing it that minimizes air bubbles.  It is making my lo so gassy.  Did you experience that?  I can see how much air is trapped in the solution but can't figure out how to get rid of it before feeding him.

[Luke-n-Me]

Erika,

Sounds like the are talking about oral-motor weakness, either way, it sounds like you are on the right track!!!  As for the bubbles, I always made up formula way ahead of time.  I bought the simply thick in the bulk packets and pre made 32 oz of formula in an Eddie Bauer water container (from Target) and then poured that into the bottles as needed.  You could do the same using small packets, just use one for every four oz. of formula, then it is settled before you give it to your lo and there are no bubbles.  When Luke was between 1 and 2 and no longer took formula, I premade 32 oz. of water/ milk/ juice and just poured it and used it as needed. HTH.   

[erikak]

Thanks again Nancy.  I did get the written report from the speech path today.  She stated that she observed 'mild oropharyngeal dysphagia' with flash laryngeal penetration, no tracheal aspiration.  Also stated he demonstrated ' reduced secondary to reduced anterior-posterior tongue movement and tongue cupping'.  and of course just the general 'discoordinated sucking pattern'.  I will be seeing a speech path on a weekly basis to help with the tongue 'weakness'.  And will continue with the thickners.  I can't believe I know all that I know now.  I struggle for so long with our first son (who by the way is named Luke)   I feel so amazed that I came across this.  I am so angry at our 'ex'-pediatrician.  I'm trying not to be because it seems this is uncommon but I feel like she just blew me off.  I usually consider myself a strong person and can't believe I tolerated being treated the way that I was for so long.  Well, it's in the past and thank goodness our son Sam has the help he needs.  And Luke is fine now and wonderful and perfect and that's all that truly matters in the end.  You really have helped our entire family, Nancy.  Thanks.  Ok, I'll stop now! 

[clarapist]

WOW- what amazing timing. My 8 week old (11 lb)  JUSt started to get fussy while eating about 3 days ago.  He starts to CRY about halfway through the bottle (around 2-2.5 oz) It's obvious he's still hungry, but will wail once I put the bottle in his mouth.  I thought it might be b/c he's tired (we're having trouble taking a full nap- just like Kelly, he wakes up after 45 minutes during the day). I can get him to drink the rest by rocking him.  This doesn't happen all the time, though. This morning, he was awake, not sleepy, and took over 4 oz just fine. 
I have my peds appt on Tuesday. Any thoughts?

Jill
Clarapist@aol.com

[Luke-n-Me]

Even though it isn't happening all of the time, I would definitely still ask your ped. for a referral to have it checked out and that way you can determine what is going on.  He shows some signs it sounds like, so it's worth looking into!  Let me know if you have more questions.................

[clarapist]

Well, went to the pedi yesterday and she was like "I've never had a "normal" baby with dysphagia.  His gag reflex is fine, etc. He miht have some reflux, so she suggested putting him upright to sleep for awhile. I have mixed thoughts.  He doesn't do it every time (maybe 1 feeding out of 7-8).   Did your LO cry with every feeding? 

Jill

[Luke-n-Me]

What a typical response for a pediatrician.  I know that many of them have not had this with normal babies, but it exists and I see it on a regular basis in my practice!!!  It's just frustrating, because to be honest, I'm certain he/she has had a "typical" baby with dysphagia and it just went misdiagnosed.

To answer your question, yes my little one cried for most feeds with the exception of when he was really tired.  However, every baby is different.  Some babies don't cry, them may take lots of breaks or have signs of respiratory issues, but those may be the only signs of dysphagia.  I evaluated a lo last week whose only sign was pneumonia (not to say "only sign", but it's pretty amazing that some of these little ones are letting liquid into their airway and not fighting it), but other than that she's "typical".  So, use your best judgement, but a normal gag reflex doesn't really indicate anything...............................

Let me know if you have more questions!

[clarapist]

Hi, i do have 2 more ?s--  I'm a physical therapist (treat peds and neuro) so I know the lingo.
When you say congestion- do you mean nasal or chest? 
Also, does this essentially mean that your LO was silently aspirating?? 

THANKS
Jill

[Luke-n-Me]

A little one could be congested either way.  I could always hear Luke's congestion nasally, but some also have signs of chest congeston and and some even have enough chest congestion that they are being treated with medications and breathing treatments for asthma.  My doctor never heard anything in Luke's lungs and I never really noticed any other signs, but some mom's claim they don't necessarily even see signs of chest congestion, but that the doctor can hear it.  That seems a bit odd to me, but I have definitely heard that a couple of times. 

In Luke's case, he was actually aspirating, but quite often these symptoms can result from simply penetrating the airway with the liquids (meaning the liquid starts to enter the airway and then comes back out).  However, after enough penetration, some liquid is bound to get in the lungs and cause problems and just the feeling of that is very uncomfortable for many little ones, because although the airway is not being totally compromised, it still feels as if it is to them. No one likes to feel anything foreign going into their airway. 

Does this help you?  I hope I didn't get too wordy.  How are things going with your lo?