Fussy Feeders - Dysphagia - a possibilty other than reflux

[debalynn]

My DD is 18 weeks, and she has some of these symptoms but not all the time.  She normally eats better when sleepy but sometimes not.  When wide awake, she often gets distracted or just wants to smile and look at me--doesn't seem interested.  It often takes up to an hour to feed her 3 or 4 oz, but sometimes she will eat faster, particularly if she hasn't eaten in hours.  Some days she screams if I move the bottle anywhere near her mouth--sometimes even if she sees it in my hand.  This is the same with breastfeeding.  I breastfed exclusively for about 2 1/2 months, but she wasn't gaining weight well, so I started supplementing with formula.  Even with breastfeeding, she has often started screaming if I even put her in the feeding position.  She is fussy while eating and acts fine--even acts relieved--when I stop trying to feed her.  She has not been congested for awhile, but she was congested constantly for at least her first month.  She's just been in the hospital for a scalding on her face--her burn healed, but they were concerned about her weight.  She refused to eat most of the time in the hospital, so they put a feeding tube in her and also put her on a schedule--eating 100 mL (a little over 3 oz) every 3 hours.  I had to attempt to force-feed her before the nurses would finally put the remainder in her tube.  This has been very stressful for us both.  Now that we're home, I don't know what to do with her.  I read this bulletin and wondered if this might be her problem.  I have an appointment in 2 days to discuss her weight issue--I might mention this to the doctor.  Question is...can she still have this condition if she has the symptoms only some of the time???  And also if she hasn't ALWAYS reacted this way?  Some days she'll eat fine--breastfeeding and formula.  Other days she would only take a bottle and refuse to breastfeed.  Here lately, she's refusing both on most days.  What do you think?

[grahamsmama]

I would definitely mention it to the doctor.  Even if it isn't dysphagia, it might be some form of reflux or some other medical issue. Reflux can definitely get worse around this age. Poor baby (and mama). Let us know how the doctor's appointment goes!

[debalynn]

The doctor thinks she's okay.  She didn't think it was dysphagia but more likely reflux and possibly burning her esophogus, which would also cause her to not want to eat.  She's also been teething.  She seems to eat better if I put gel on her gums first, and also she's on gaviscon for the reflux.  So, hopefully those things will help, and hopefully she'll start eating more.

[grahamsmama]

I hope the gaviscon works for you guys.  Keep us posted. 

[jasandbensmum]

OMG. Just read this and this was my DD at Christmas, well up until Christmas. She kept having chest infections, was snuffly all the time. I have videos of me trying to feed her actually because feeding was that bad, feed when sleepy.

She was put on carobel at Christmas and more meds but would the carobel (thickener) help this condition do you think? I think she had this aswell as acid reflux.

[kiki2609]

Hi,
My LO is almost 7 months old now and I can not believe I am just discovering this post and this problem. I was breastfeeding (or trying) for months with her screaming in my arms choking etc (bottle was out of the question for her). I had to make her fall asleep before giving her the breast as she would only scream. At one point I could only give her to eat by walking around with her sleeping in my arms. She does not have reflux (my son had it so I pretty much now the signs) and as I was very persistant she did manage to gain some weight altough not much but enough for the heath  visitors to say that she was fine. And lets not even start about her sleeping.
When she was 4 months old I started introducing the bottle which was a battle she would only take 3-4oz and this was great for me.
Now she has her days, she manages her solids and sometimes even 6oz of milk but some days nothing does it.
Tomorrow morning I am going to see my GP and I am not leaving before being referred to a Paediatrician.
When I read all these stories I even start thinking I was lucky as I managed to Breast feed until 4 months. Nothing worse for a mother then trying to feed her child with no success, talk about the breast as a pacifier  more like a torture machine.
I know the worse is behind us but I just wanted to say GOOD LUCK to all of you and hang in there

[grahamsmama]

I'm so glad you found this information and I hope that she is on the path to recovering very quickly!

[mich75]

Hi there,

My husband makes fun of me for reading these but I am so glad I did. Our son is almost 3 months old and we have been having very similar problems for the last month or so.  He takes his first 1-2 oz in our arms no problem, we burp him and put him back into the feeding position and he crys.  We put him in his bouncy chairs and he sits and smiles happy as a clam.  He will then take more but not usually until the bottle is almost old...45 min to 1 hr.  For a while we were even putting his soother in his mouth to start the sucking action and then quickly pulling it out and putting the bottle in (work half the time).  We are at a loss and getting very frustrated.  I have tried other brands of bottles, next step nipples and nothing seems to help.  We don't typically dream feed but when we did try it he down the whole bottle one gulp with no fussing.

Do you think it could be Dysphagia?  My GP will probably just think I am crazy, so I am not sure what to do.  He does spit up but not often..he has some days that are worse than others.

Any suggestions?

[Belani08]

Hi

I have an 8.5 month old daughter, she was born very little (due to a condition with my placenta) 2.35kg's, she was in special care for 2 weeks and being tube fed for the majority of that time.  Since the very beginning I have found feeding to be stressful, I tried breastfeeding and it wasn't happening so after 11 weeks switched to the bottle (which took a little effort on her part).  Even though this was better, she has never fed well, seems to be significantly less than what other babies her age seem to take in.  Her weight gain I have monitored thoroughly as she was so little and I was worried about her feeding I wanted to make sure she was gaining weight, she has gained but always on the low side, at a couple of weeks she had no weight gain and one week had even lost.  Overall the clinic kept telling me that not all babies are text book, she "looks ok" doesn't look like a sick baby and maybe she is just a small eater in other words i was being a paranoid first time mother.  I have always thought there was more to it.  When she started solids it was the same story, it is such an effort to get her drink 100ml per bottle anywhere between 30 min - 1 hr, some bottles she will only take 60ml and I feel like i spend all day trying to get her to "finish" bottles which hardly ever happens, I find that she tends to do better with her bottles if she has little bits every 15 mins or so, with her solids some feeds she just won't eat at all.  She does have some days better than others...but generally has never been a good eater.  She has always coughed during her bottle feeds, she gags during her solid feeds, and has always had some sort of congestion after both bottle and solid feeds, sounds like she has a cold but does not (last for a little while after her feeds) she does not/has not ever fed herself or put anything into her mouth not food, rusks or toys.  The only thing she puts in her mouth herself is her fingers in which case she starts to make herself gag.  It was only recently i.e. last night that I started googling for something/anything that might be causing this and eventually came across dysphagia, which to me sounded like it fit...so the google's on dysphagia eventually led me to this site...What I am wondering is if this sounds like it could be dyshpagia or me being dramatic that is causing her feeding troubles, also whilist reading on dysphagia I noticed that a lot of info seems to state that more often than not that dyshpagia occurs in babies with other conditions one of them being muscular dystophy, when I read this I freaked out as my partner had an 8 mth old baby boy (from previous marriage) that passed away from SMA...so I am starting to worry a lot, I intend to get her into her paediatrician as soon as possible (although he has always spoken to me like I was an idiot so I am expecting him to tell me I am being dramatic), and also am getting the name of another paediatrician that a friend of mine's child used and she just loves her (as I am expecting a non-helpful response from the current paediatrician).  The whole "aspirating" thing sounds frightening and I am wondering if it is something I should worry about in the meantime, i.e. until I get her to the dr's or not??
sorry about the length....

[ccrtschimp]

Hi,

I've been reading through this post (didn't make it through all 16 pages, but getting there) off/on for days now.  I am not an expert, but I am a full time mom of a DS who is 9 months old, has GERD and dysphagia.  First and foremost advice I can give you:  you know your child best, and if you think something isn't right, don't give up asking questions until you find someone who is knowledgeable and cares to help you!!!  You have been dealing with these issues for 8.5 mos. now and that is a LOOOOOOONG TIME to deal with it.  You must be exhausted, or maybe you're at the point where you think, life is just like this and go through the motions...

My heart goes out to you and all other parents dealing with these issues.  What is the deal with these "experts" who won't listen???  I am SO depressed and demoralized when I think back to how long my DS has been dealing with pain from GERD and some variety of feeding issues!  Whenever we reported various "problems" to our ped. we would get the "first time parent" brush-off, and instead of standing our ground and pursuing it, I confess that we gave up thinking WE were the problem.

This can be DANGEROUS because- now we know- that when a baby drinks or eats and gags or chokes a lot, sounds raspy/congested, etc. he/she could be *penetrating*, *micro-aspirating* and/or *aspirating* liquid and/or food into their airway/lungs.  Aspirating is can be very dangerous- anywhere from damaging the child's lungs, causing pneumonia and other complications, interfere with breathing, and worse case scenario, cause them to stop breathing.  I DO NOT WANT TO SCARE ANYONE, but I am mentioning this because I think it's the best reason to investigate ASAP and either RULE OUT or TREAT the dysphagia.

We had to learn this by reading medical literature because by 8 mos. our ped. finally recommended we do a MBS to rule out aspiration.  When I asked her what that was all about, she actually told us NOT to worry about it and to NOT go read about it because we would just worry ourselves!

Common "advice" given to us (and others, apparently) from the "experts":

Re drinking/eating:
>> if the baby's not eating much, maybe he/she's just not hungry; try waiting longer between feeds; wait until he/she cries to tell you he/she's hungry, etc.
Why this can be a problem:
if a baby has GERD and/or dysphagia, getting upset and crying can make it worse; they will limit or refuse their intake even though they are hungry; etc.

Re crying when going down for a nap:
>> you are responding too quickly/frequently to the crying; try letting him/her cry it out; tire him/her out more before nap time OR maybe he/she is overtired so put them to bed earlier; etc.
Why this can be a problem:
if a baby has GERD, laying them down flat (even on belly) can worsen the pain as the stomach acid comes back up into the esophagus, PLUS getting upset and crying can make the reflux and pain worse.

I think I'll stop for now, but I could go on and on about the advice we got whenever we reported a problem to the ped.  At 5.5 mos. he had dropped from 75th percentile in weight (at 2 mos.) to 10th, and finally, the lack of drinking was taken seriously, but the advice was "start him on solids."

Basically, because we didn't pursue our problems earlier, the reflux worsened once on solids because he was ingesting more (at first) causing more reflux.  It eventually led to today, where he still has a mild aversion to both bottle and solids despite therapy.  We are still pursuing avenues of recovery.

Note:  untreated GERD can irritate and even scar the esophagus, which can lead to (or worsen) dysphagia.
Alternately, dysphagia can be due to a baby not developing a good breathe-suck-swallow technique whether they are otherwise healthy or not.

Note:  one thing my husband and I implemented as soon as we'd educated ourselves about dysphagia was switch DS back to a level 2 nipple on his bottle.  Within a day, his wet/raspy chest sounds almost disappeared.  No expert suggested this, we just figured, "if the formula comes out slower, maybe he can handle it better."

While I'm at it, here is our current dilemma:
DS is on a level 2 nipple which has helped tremendously.  However, both the ped. and the speech therapist recommends that we thicken his formula so that he will swallow properly and never aspirate.  But if we thicken the formula, we need to increase the nipple size => which he does worse on, PLUS he does not like getting thick liquid out of his bottle.  So, I'm wondering, how long do we try the thickened liquid before we give up if he either refuses to drink and/or sounds wet/raspy again because of the bigger nipple?!

Hope some of this was helpful.  If anyone has advice for me, please help, thank you!

-Christine

[Debonair]

Hello 
I just wanted to write and say my DS the little boy i wrote about at the beggining of this section has just had his 4th birthday.....
THANK YOU SO much I still remember thoose early days of dispair and this post and Luke N Me really helped me ask the right questions and get the right answers, My Ds is still a little fussy but is 2 stone 4 and full of mischief  ...

Take care everyone who reads theese posts, its horrible what you are going through....

I gave birth to my DD and she is now 10 months just crawling ..... as hard as the early days are enjoy they go SOOOOO quickly and never give up on your instincts and never be too frightened to ask the questions to the doctors xxxxx

[* Paula *]

Debonair,

Thank you so much for posting your update

[Lisaaaaa]

Yesterday and today I managed to read through this whole post, and I'm glad I did!  While I wish you ladies didn't have feeding problems with your LOs, it is nice to know that I am not alone...

Here's my LOs story... Luke is 5 months old and about 16.5 lbs.  He was a great eater for the first 2 months (formula fed).  Just around 2 months, he started fussing on one bottle a day... then 2 bottles... and gradually, he was fussing on all bottles, except his 11pm dreamfeed.  By fussing, I mean squirming, arching, turning his head back and forth, screaming out, failing arms, etc.  He takes about 1-3 oz and eventually, he just refuses.  We also have to feed him each of his daytime bottle twice in order to get this much into him.  Over time, we have gotten to a position where he can't even eat in our arms at all anymore during feedings, and we actually try to feed him lying down in his crib to keep him as drowsy as possible, since like many (all?) of your babies, he eats much better when asleep.

We have tried almost everything at this point... we changed bottles (Dr. Brown - helped for about a week), changed formulas (soy, nutramigen, no dha/ara - only the Enfamil Thickened (same as AR in the US - I am in Canada) has really worked for us at all), tried different feeding positions, Zantac... probably more things too that I can't think of.

Up until a couple of weeks ago, we could still always somehow get 20 oz or more into Luke each day.  We also thought the Zantac was helping since we saw and increase in his intake for a few days after it (he even hit 30 OUNCES one day!  which is something he hasn't done since he was 2 months old!).  Now, for the past few days, we are only getting 15-20 ounces into him, and that is with most of it coming from a dreamfeed.  Today, it's 9pm, and he's only had just under 10 oz and we only have the dreamfeed left.  So things are certainly getting worse, not better.  He is getting to a point where he gets nervous and fussy as soon as he sees the bottle.  Since he feeds better sleepy, we are at a point now where we are going to start waking up at night to feed him an extra bottle (so backwards - to have to wake up even when you LO sleeps through the night!).  He has also been terribly constipated for about 2 months... hard, dry, fully formed poos.

Our doctor does not take is seriously.  She says as long as he's getting 20 oz, not to worry.  She doesn't even believe he has reflux or anything and even the Zantac we got from another dr while on vacation - she didn't think it was necessary).  Well, now, since the last time we saw her (3 days ago) he is taking even less than 20.  We don't want to go to her again and are trying to find another pediatrician but it's hard here in Canada since many are not taking new patients and you can't just go and pay for service.  Luckily, DH's brother in a dr in the US and he knows a dr here in Canada as a great kids hospital and is helping us get Luke seen there... we are hopefully going to get a referal tomorrow... fx...

I think Luke has the symptoms of dysphagia and probably some reflux too, especially since the Zantac helped so much for a while.  We are hoping to get the mbs (I'm glad I know what to ask for - thanks ladies!) to find out for sure what his problem is.  And while we have been giving a thickened formula, I have also ordered Simply Thick to try out instead since so many on here have had success with it.  We are also hoping to get Prevacid instead of the Zantac since he did show improvement on the Zantac but we think he needs something stronger.

Any input on what you think we should be doing is great... my one main question is about feeding him laying flat in his crib... we do this to keep him drowsy and we do get better feeds out of it... but is it safe?  and is that even a normal way to eat?  I know I can't drink lying down so I'm wondering if Luke should be.

Thanks for this post... I loved reading it.  ANY input would be great.

[~Emma~]

 Just wanted to offer some hugs as I know how you feel. Have you had your LO checked for tongue tie? Not all health professionals look in bubs mouth when they are young...they certainly didn't with mine! (I am tongue tie in the brain since it was diagnosed! )
 I only ask as this is the reason my LO is a fussy feeder and I didn't start seeing quite how bad it was until after he was 2 mos old. I thnk this is because he was so young and feeds could be quite sleepy anyways. At the moment I am the sameas you...lucky if I get the 'proper' amount in him. I rely on the dreamfeed for getting calories in. I wouldn't think you have to wale him in the night for feeds, if he is hungry he will let you know all about it!

 Have you tried using a different teat flow? This is always a nightmare for me as he doesn't respond well to any little changes in feeding regardless of whether he needs them or not! 

 I am sorry you are getting no help from your doctor, I have also been there myself. Your LO may have a negative association with the bottle due to the reflux. It can be so hard but you are not alone. I dread feeding times which doesn't help ds at all as i'm tense too. I am so exited about starting solids and reducing those bottle feeds.

Emma xxx

[Lisaaaaa]

Brodiesmummy - Thanks for the response!  I will ask again about him possibly being tongue tied.  He was checked at birth, and now that you mention it, I think they said it was "not too bad" but who knows what that means!  What are the symptoms of being tongue tied?  Do they fit Luke's behaviours?

We have also definitely tried different nipple flows... I actually moved back down to Level 2 (Dr. Browns) after reading this post since I thought maybe it would be easier for Luke to control the flow.  I hope it works out!

And we did wake him to feed last night... we can't wait just until he's hungry to feed him... he never behaves hungry and would probably wait 6+ hours to complain if we didn't feed him.  I think that's past of his condition (whatever condition he has!)... he is averse to feedings now.